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Identifying the
psychosocial
factors and
processes
contributing
to successful
adjustment
to disfiguring
conditions
by
THE APPEARANCE RESEARCH
COLLABORATION
Professor Nichola Rumsey,
Dr James Byron-Daniel,
Dr Rodger Charlton,
Dr Alex Clarke,
Dr Sally-Ann Clarke,
Dr Diana Harcourt,
Ms Hayley James,
Mrs Elizabeth Jenkinson,
Dr Antje Lindenmeyer,
Dr Tim Moss,
Professor Rob Newell,
Professor Stanton Newman,
Mrs Krysia Saul,
Dr Andrew Thompson,
Ms Eleanor Walsh,
Dr Paul White,
Miss Emma Williams
Final Report submitted to:
Project Manager:
Professor Nichola Rumsey,
Centre for Appearance Research,
Department of Psychology
University of the West of England, Bristol

Advisory Panel
ACKNOWLEDGEMENTS
Brendan Eley, Chief Executive of The Healing Foundation
Olivia Giles, The Healing Foundation Ambassador
John Kenealy, Consultant Plastic Surgeon, North Bristol NHS Trust
Terry Paterson, GP- Bristol
Pam Warren, The Healing Foundation Ambassador
Luke Wisemen, The Healing Foundation Ambassador
Bristol Site (Principal Investigator: Professor Nichola Rumsey)
Laser centre, Frenchay Hospital:
Mr John Kenealy and Ms Kay Thomas, Consultants in Plastic and Reconstructive Surgery,
Sue Prior and Susan Large, administrative support
Skin cancer clinic, Frenchay Hospital:
Mr John Kenealy (as above)
Joanne Watson, Clinical Nurse Specialist
Emma Mills, administrative support
General plastics dressing clinic, Frenchay Hospital:
Mr Timothy Burge and Ms Catalina Estela, Consultants in Plastic and Reconstructive Surgery
Eileen Watkins, administrative support
Ophthalmology clinic, Bristol Eye Hospital:
Mr Richard Harrad, Clinical Director and Consultant Ophthalmologist
General Practitioner Surgeries:
Dr Terry Paterson and Dr Fiona Ormerod, Pilning Surgery, Bristol
Keith Minty and Dr Ulrich Freudenstein, The Family Practice, Cotham, Bristol

Follow-on Studies:
Emma Halliwell, Senior Lecturer, UWE
Katie Egan, MSc Health Psychology Student, UWE
Habib Naqvi, Health Psychologist in Training, UWE
Jennifer Hughes, Health Psychologist in Training, UWE
Heidi Williamson, Health Psychologist in Training, UWE
James Kennedy, Research Assistant, UWE
UCL Site ( Lead: Professor Stanton Newman)
Rheumatology Department, University College London Hospital:
Dr Michael Shipley, Consultant Rheumatologist
Abigail Olaleye, Specialist Rheumatology Nurse
Samantha Moore, Specialist Rheumatology Nurse
Moorfields Eye Hospital, London:
Dr Daniel Ezra, NIHR Clinical Lecturer
Mr Geoff Rose, Consultant Surgeon
Mr Nigel Sapp, Chief Ocularist
Dept of Plastic and Reconstructive Surgery, Royal Free and University College Hospitals:
Professor Peter Butler, Consultant in Plastic and Reconstructive Surgery
Mr Patrick Mallucci, Consultant in Plastic and Reconstructive Surgery
Mr Hugo Henderson, Consultant in Plastic and Reconstructive Surgery
Mr Simon Withey, Consultant in Plastic and Reconstructive Surgery
Ms Veronica Brough, Assistant Psychologist
Ms Fran Smith, Honarary Assistant Psychologist
Sheffield/Bradford Site (Leads: Professor Rob Newell & Dr. Andrew Thompson)
Bradford Teaching Hospitals NHS Foundation Trust, St. Luke’s Hospital:
Dr. Wright, Consultant Dermatologist
Dr. Worrell, Consultant Ear Nose & Throat Surgeon
Dr. Bem, Consultant Ear Nose & Throat Surgeon

Dr. McCall, Consultant Ear Nose & Throat Surgeon
The Mid Yorkshire NHS Hospital Trust, Pinderfields General Hospital:
Dr. Ford, Consultant Clinical Psychologist Burn Care
Sheffield Teaching Hospitals NHS Foundation Trust, The Royal Hallamshire Hospital, The
Northern General Hospital, The Charles Clifford Dental Hospital
Mr. Westin, Consultant Ear Nose & Throat Surgeon
Mr. Smith, Consultant Oral Maxillofacial Surgeon
Mr. Brotherston, Consultant in Plastic & Reconstructive Surgery
Mr. Freedlander, Consultant in Plastic & Reconstructive Surgery
Mr. Ralston, Consultant in Plastic & Reconstructive Surgery
Mr. Fitzgerald, Consultant in Plastic & Reconstructive Surgery
Dr. Datta, Consultant Prosthetist & Surgeon
Miss. Currie, Consultant Ophthalmologist
Miss. Tan, Consultant Ophthalmologist
Professor Rennie, Consultant Ophthalmologist
Mr. Rundell, Consultant Ophthalmologist
Professor Gawkrodger, Consultant Dermatologist
Barnsley NHS Foundation Trust
Dr. Sabroe, Consultant Dermatologist
Nottingham University Hospitals NHS Foundation Trust, Cleft Lip & Palate Service
Ms. Martin, Clinical Director of Cleft Lip & Palate Service
Follow-on Studies:
Ms. Vines, Chief Executive, The Vitiligo Society
Professor Gawkrodger, Consultant Dermatologist, The Royal Hallamshire Hospital
Dr. Datta, Consultant Prosthetist & Surgeon, The Northern General Hospital

Warwick Site (Lead: Dr. Rodger Charlton)
General Practitioner Surgeries:
Gabby Harris, Practice Manager, Castle Medical Centre, Kenilworth
Stephen Gallagher, Practice Manager, Clarendon Lodge, Leamington Spa
Lizzie Higginson, Head Receptionist, Clarendon Lodge, Leamington Spa
Jenny Creighton, Practice Manager, Croft Medical Centre, Leamington Spa
Janet Hastings, Practice Manager, Engleton House Surgery, Coventry
Karen Shirley, Practice Manager, Green Lane Medical Centre, Coventry
Chris Mullett, Practice Manager, Park Leys Medical Practice, Coventry
Janet Bench, Administrator, Longford Primary Care Centre, Coventry
Glyn Rawlings, Practice Manager, Red Roofs Surgery, Nuneaton
Tom Ganner, Practice Manager, Rother House Medical Centre, Stratford upon Avon
Mrs Gina Moore, Practice Manager, Broad Street Surgery, Coventry
Dr Jag Sihota, General Practitioner, Broad Street Surgery, Coventry
Follow-on Studies:
Professor Mark Johnson, De Montford University
Daya Singh, Community Facilitator
Gurnam Singh, Community Facilitator
Rukhsana Bibi, Community Facilitator
Akm Kamruzzaman, Community Facilitator
Fatima Marzia, Community Facilitator
Mahomed Saleh, Community Advisor
Rita Saujani, Community Advisor
This research was supported by the generous funding and management by
The Healing Foundation and support by the Worshipful Company of Tin
Plate Workers

SECTION 1
CONTENTS
EXECUTIVE SUMMARY 1
LAY SUMMARY OF RESEARCH PROGRAMME 7
BACKGROUND & RATIONALE FOR THE PROGRAMME 11
MAIN STUDY
Factors and processes involved in adjustment to disfigurement: a
cross-sectional study (Study 1)
Qualitative responses to free text question in the cross sectional study
(Study 2)
Longitudinal quantitative study of change and stability in
psychological adjustment to appearance (Study 3)
A qualitative investigation of change and stability in psychological
adjustment to appearance (Study 4)
SECTION 2
FOLLOW –ON STUDIES
Page
Rationale 115
A qualitative study of the experiences of people who identify themselves
as having adjusted positively to a visible difference (Study 5)
117
Focus group studies of BME community views of facial disfigurement
and visible differences (Study 6)
125
A qualitative study exploring the experiences of UK South Asians living
with vitiligo (Study 7)
137
An investigation of appearance-related social comparisons amongst
individuals with visible differences (Study 8)
151
Appearance concern, hostility & social situations (Study 9) 155
Developing a scale to measure the impact of appearance concerns on
intimate behaviours (Study 10)
163
Women with limb prostheses: experiences and adjustment (Study 11) 171
Does appearance matter in the context of Rheumatoid Arthritis? (Study
12)
183
Working with patients with visible differences: general practitioners’
beliefs, decision making processes and training needs (Study 13)
191
23
71
85
99

SECTION 3
Page
OVERALL SYNTHESIS OF RESULTS 197
THE INTERVENTIONS STRAND 203
CONCLUSIONS AND THE WAY FORWARD 211
REFERENCES 215
SECTION 4
APPENDICES 229
1. Publication Strategy
2. Dissemination Strategy
3. Questionnaire booklet (study 1)
4. Ethics approvals
5. Information sheet (study 1)
6. Consent form
7. Operating Manual
8. Percentage reporting sensitive area
9. Questionnaire booklet (study 3)
10. Semi-structured interview schedule (study 4)
11. Interventions manual

LIST OF TABLES
Study 1
1.1 Sample means and standard deviations for outcome measures according
to method of recruitment
35
1.2 Sample means and standard deviations for outcome measures according
to geographical area of recruitment
35
4.1 Pearson’s correlation matrix for outcome measures 37
4.2 Correlation of quantitative variables with outcome variables 38
5.1(a) Age and gender frequency for whole sample 38
5.1(b) Mean values for outcome variables by gender 38
5.1(c) Frequency of number of areas reported as sensitive according to
gender.
40
5.1(d) Mean values for outcome measures by visibility to others 40
5.2(a) Correlation of Outcome Variables with Age 40
6.1(a) Frequency and percentage reporting area of concern 42
6.2(a) Means and standard deviations for visible and non visible areas on
outcome measures
42
6.3(a) Frequency of number of areas reported as sensitive according to
gender.
43
6.3(b) Mean and standard deviations for number of areas of concern by
outcome variable
43
7.1 Correlation of optimism with outcome variables 44
8.1 Mean and standard deviations for all socio-cognitive factors 44
8.2 Correlation of socio-cognitive factors with outcome variables 44
9.1 Mean and standard deviations for all appearance cognitions 44
9.2 Correlation of the appearance cognitions and the outcome variables 45
9.3 Mean and standard deviations for each outcome variable according to
level of disguisability.
45
9.4 Mean Outcome variables according to reported level of visibility when
clothed
46
10.1 Regression Model for DAS24
49
10.2 Regression Model for HADS Anxiety
50
10.3 Regression Model for HADS Depression 51
10.4 Regression Model for Aggression 53
10.5 Regression Model for Positive Affect 54
10.6 Regression Model for Negative Affect 55
11.1 Mean and standard deviations for each outcome variable by clinic 56
11.3 Percentage of participants with low (0-7), mild (8-11), and moderate/high
(12- 21) levels of anxiety and depression
58
11.4 Percentage of participants with low (0-7), mild (8-10), and moderate/high
(11- 21) levels of anxiety and depression by clinic category
58
Page

Study 3
3.1 Response rates for responders and non-responders at follow-up 87
3.2 T-test comparisons between responders and non-responders at follow-up 87
3.3 Descriptive and Inferential Statistics for responders and non-responders
at follow-up
88
3.4 Regression Model for DAS24 89
3.5 Regression Model for Anxiety 90
3.6 Regression Model for Depression 91
3.7 Regression Model for Aggression 92
3.8 Regression Model for Positive Affect 93
3.9 Regression Model for Negative Affect 94
Study 6
6.1: Interventions suggested by Bengali Older Females 136
Study 12
12.1 Demographic data by group 186
12.2: Means and standard deviations for all variables by group 187
LIST OF FIGURES
1 Working framework of adjustment to disfiguring conditions 15
2 Representation of the Research Programme 18
3 Operationalising the Framework – Choosing appropriate measures 28
4.1(a) Comparative box-and-whiskers plot for DAS24 by geographical location 35
4.1(b) Comparative box-and-whiskers plot for HADS Anxiety by geographical
location
36
4.1(c) Comparative box-and-whiskers plot for HADS Depression by
geographical location
36
5.1 DAS24, HADS Anxiety, HADS Depression and Aggression by gender 39
5.2 DAS 24 against Age 41
6.195% confidence interval for mean DAS according to number of sensitive
areas reported.
43
7.1(a) Scores on the DAS 24 and responses to the question “How difficult is it
to disguise the aspect of your appearance you are concerned about?”
46
8.1 Further development of the model = hierarchical stepwise multiple
regression
47
9.1(a) Comparative box-and-whiskers plot for DAS 24 scores by condition 56
9.1(b) Comparative box-and-whiskers plot for HADS Anxiety scores by
condition
57
Page

Page
9.1(c) Comparative box-and-whiskers plot for HADS depression scores by 57
condition
10 Further Development of Model of Adjustment 59
11 Model of Processing Influence of Appearance Self-Schema (Rosser, 2008) 68
12 Resulting proposed framework for understanding adjustment to
202
appearance based on research programme
13 Stepped care framework for interventions to promote psychosocial 209
adjustment in appearance concern
14 Discussion framework for the routine availability of screening, assessment 212
and intervention

Introduction
EXECUTIVE SUMMARY
This report summarises the results of a three year research programme designed to investigate
the psychosocial factors and processes contributing to successful adjustment to disfiguring
conditions. The project was generously funded and managed by The Healing Foundation and
supported by the Worshipful Company of Tin Plate Workers.
The research team was led by Professor Nichola Rumsey and researchers from The Centre for
Appearance Research, UWE Bristol, and carried out by a team of researchers from the
Universities of Bradford, Sheffield, Warwick and UWE Bristol, University College London and
the Royal Free Hospital, London.
An advisory panel of people with personal experience of disfigurement and clinicians involved in
their care contributed to the project throughout, including the design, reporting & dissemination
stages.
Background
Visible disfigurement can have a profound psychological impact. In excess of 1million people in
the UK have a significant disfigurement to the face or body, as the result of a congenital or birth
condition, from trauma, disease, or from medical or surgical interventions to treat other
conditions. However, not all people are equally affected and a proportion adapt positively to the
demands upon them, in some cases perceiving their visible difference as a positive advantage.
Nevertheless, the amount of research examining adaptation has been small, and no adequate
account of the process of adjustment has been developed. This programme of research
presents and explores a model for adjustment.
Aims
• To clarify the psychosocial factors and processes which contribute to variation in
adjustment in people with visible disfigurement
• To use the results to inform the development of packages of support and intervention
Methods of investigation
Participants: People with visible difference recruited from hospital clinics and the community
(some substudies involved GPs, and members of the general public).
1

Procedures: This programme of research used 3 approaches:
1. A large scale questionnaire-based cross-sectional study involving participants with a
range of disfiguring conditions (n=1265), using a battery of validated measures relevant
to the cognitions, emotions and behaviours of people with visible difference (Study 1),
and including free text questions which were qualitatively analysed (Study 2).
2. Two longitudinal studies: repeat of the questionnaire measures after a 9 month interval
(n=360) (Study 3); a qualitative interview study of stability and change in adjustment with
a subsection (n= 26) of the participants from study 3 (Study 4).
3. Nine follow-on studies employing a range of methodologies to focus in more depth on
specific topics: positive adjustment (Study 5); black & minority ethnic community views
(Study 6); South Asians with vitiligo (Study 7); social comparison processes (Study 8);
appearance concern, hostility and social situations (Study 9); scale development for
intimate behaviours (Study 10); women with limb prostheses (Study 11); appearance
and rheumatoid arthritis (Study 12); general practitioners’ beliefs, experiences and
training needs (Study 13).
Results
In the body of the report, study results are presented sequentially. To avoid repetition, in this
summary, results are presented according to main outcome themes, based on the synthesis of
results in the report.
Profiles of Adjustment and Distress: Participants demonstrated very variable profiles of
adjustment and distress and revealed characteristics of both more and less well adjusted
people. Difficulties and distress were often considerable, both for those currently seeking and
not seeking intervention, indicating unmet need (Studies 1, 4, 5).
Adjustment is multi-factorial (all Studies) and is contributed to by dispositional style
(optimism/pessimism) (Studies 1, 4) and cognitive processes such as levels of satisfaction with
social support (Studies 1, 3, 4, 5, 11), fear of negative evaluation (Studies 1, 4) perceived social
acceptance (Studies 1, 4) and interpretation of the responses of others (Studies 2, 11),
appearance specific cognitions, including salience, valence (value) and appearance-related self
discrepancies (Studies 1, 3, 4). The role of some factors in adjustment to disfigurement, hitherto
neglected in research, have also been highlighted, including aggression in response to
appearance-related threats (Studies 1, 9), and the role of functional disability and the desire to
function independently (Studies 11, 12). These appearance-specific issues may cause distress
in the absence of other more general signs of psychological need (for example, anxiety or
depression) (Studies 1, 4, 9, 10), but nevertheless impact negatively on many aspects of the
lives of those affected.
Other factors and processes produced contradictory findings within this programme and are in
need of further research, including the issue of the visibility of a disfigurement to others (Studies
1, 3),and social comparison processes (Studies 1, 8).
Positive Adjustment and Resilience: People who self reported as positive adjusters described
the experience of disfigurement as one of personal growth (Studies 5, 11) and reported a
number of strategies that appeared to work well, including pragmatism and ‘getting on with it’ in
the face of challenges (Studies 5, 11), acceptance and determination (Study 2), and engaging
with problems and difficulties rather than avoiding them (Studies 3, 5, 7).
2

The Impact of Appearance-Related Distress: Appearance related distress impacted on a wide
range of daily activities and cognitions about the self, social functioning and intimate
relationships (Studies 1, 2, 3, 4, 6, 7, 10).
The Multiple Nature of Appearance Concerns: Distress relating to appearance can relate to
many different aspects of the body (Studies 1, 2) and can include an exclusive focus on
disfigurement, but also may result from concerns about weight, shape, and the effects of ageing
on appearance. In some cases these latter concerns caused more distress than the
disfigurement. Interestingly, the consequences for the individual of concerns about aspects of
appearance which are not normally considered to be disfigurements (such as body shape and
size and the effects of ageing) appeared to be strikingly similar to the distress caused by
disfigurement (Studies 1, 2).
The Dynamic Nature of Adjustment: Fluctuations in the salience and impact of appearance
concerns are triggered by a variety of events and changes, including life events, developmental
milestones, signs of ageing, and the cumulative impact of daily stressors such as the reactions
of others (Studies 2, 4). Even when adjustment is positive over long periods of time, coping with
a visible difference can be an ongoing strain on resources (Studies 2, 11).
The Impact of Age, Gender and Ethnicity: The focus on this research programme has been on
those psychological factors and processes which are amenable to change, yet these issues are
also contextualised by characteristics which cannot be changed.
The span of ages of the participants was large (18-91 years) (Studies 1, 2, 3, 4). There were
overall decreases in levels of distress with age, but individual variation was considerable, and
large numbers of older people were distressed about their appearance.
Appearance related distress was higher in women, but differences between men and women
were small, and many men had significant and, in some cases, debilitating concerns about their
appearance (Studies 1,2,3,4).
Within the ethnic groupings included in Studies 6 and 7, there was evidence of the strong
influence on the beliefs, attitudes and personal experience of people with disfigurement
resulting from cultural and religious beliefs.
Conclusion
This has been the largest programme of research to date into psychosocial aspects of
disfigurement. It has made a significant contribution to knowledge concerning adjustment to a
visible difference by providing evidence to support a model of adjustment that will inform both
further research and provision of care.
Scores on all measures were not indicative of high levels of distress. This is an important finding
which recognises many people with visible difference adjust well. However, the variation in the
sample was considerable, and substantial numbers of participants did report high levels of
distress, highlighting unmet need, even though others were well adjusted. Contrary to
expectations, levels of adjustment and distress in the cross sectional study (Study 1) were
similar in the samples recruited from hospital clinics and from the community. In the clinic
sample, levels of distress were not explained by the type of clinic attended.
3

Adjustment and distress are multi-factorial. A synthesis of findings from all the studies indicates
that the psychological characteristics of those who were positively adjusted included higher
levels of optimism, greater feelings of social acceptance and satisfaction with social support, a
lack of concern about negative evaluations by others, and a self-system with lower levels of
salience and valence afforded to appearance related information. Levels of social anxiety and
social avoidance were low, as were levels of negative affect, general anxiety and depression.
These people felt their disfigurement was reasonably easy to disguise, and tended to be older
than people with higher levels of distress.
By contrast, those experiencing high levels of distress were characterised by a more pessimistic
outlook on life, higher levels of fear about negative evaluations by others and perceptions and
lower levels of satisfaction with levels of social support. The discrepancy between how they
perceived their appearance to be, and how they thought it should be was considerable. They
believed their disfigurement was visible to others, and hard to disguise. Appearance concerns
occupied a more central position in their cognitive architecture and in the way they process
information from their social environment.
These findings have consequences for the wellbeing of people with visible difference, as many
of the characteristics of those with higher levels of distress are amenable to intervention for
which there is a growing evidence base. Accordingly, the results of this programme of research
have been used to inform the development of an intervention manual which is included in this
report. This manual will form the basis of a training package to be piloted in November 2009.
Summarised recommendations
Intervention
Packages of support and intervention tailored to individual need should be developed, trialled
and refined.
Support and intervention should address the socio-cognitive and appearance specific cognitions
identified in this and earlier studies.
Support and intervention should be offered in a timely way according to a tiered model from
generalist to specialist interventions.
Screening and referral pathways to facilitate this approach should be developed.
Interventions should have regard for the cultural context of different groups of people with visible
difference.
Training and education
Training packages for health professionals should be developed emphasising screening, tiered
treatment and referral.
Public education initiatives should be developed to reduce the pressure from the media and
society on those vulnerable to appearance concerns.
4

Research
Further investigation should take place of key issues raised and explored by this programme
(e.g. visibility and disguisability, functional disability, gender, appearance concerns in those with
and without disfigurements).
Culturally sensitive measures of social and appearance concerns in those with visible
differences should be developed and validated.
Resources
Funding is needed for all aspects of intervention, training and education, and the research
associated with these.
5

IDENTIFYING THE PSYCHOSOCIAL FACTORS AND PROCESSES CONTRIBUTING TO
SUCCESSFUL ADJUSTMENT TO DISFIGURING CONDITIONS
A project funded by The Healing Foundation conducted by:
The Appearance Research Collaboration 1
LAY SUMMARY OF THE RESARCH PROGRAMME
Visible disfigurement can have a profound psychological impact. In excess of 1 million people in
the UK have a significant disfigurement to the face or body. The difficulties experienced can be
pervasive and debilitating, and include negative experiences related to social encounters with
others and adverse effects on self-esteem and quality of life.
Not all people are equally affected and a proportion adapt positively to the demands upon them,
in some cases perceiving their visible difference as a positive advantage.
The amount of research examining adaptation has been small, and no adequate account of the
process of adjustment has been developed. This project explores and describes the process of
adjustment.
The project
A three year research programme designed to identify and investigate the psychosocial factors
and processes contributing to successful adjustment to disfiguring conditions, with particular
emphasis on those aspects which are amenable to change. The project would have been
impossible without the generous funding and management of The Healing Foundation and
support of the Worshipful Company of Tin Plate Workers.
An advisory panel of people with personal experience of disfigurement and clinicians involved in
their care contributed to the project throughout, including the design, reporting & dissemination
stages.
Aims
• To clarify the psychosocial factors and processes which contribute to variation in
adjustment in people with visible disfigurement
• To use the results to inform the development of packages of support and intervention
The studies
• A large survey of 1,265 participants with visible differences from a variety of causes has
been carried out.
• A further survey following up 360 participants over 9 months.
• An interview study following up 26 participants in depth after 9 months
• 9 smaller studies looking at emerging issues in greater depth 2
1 The research team was led by Professor Nichola Rumsey and researchers from The Centre for Appearance
Research, UWE Bristol, and carried out by a team of researchers from the Universities of Bradford, Sheffield,
Warwick and UWE Bristol, University College London and the Royal Free Hospital, London.
2 Studies examined positive adjustment ; black & minority ethnic community views; South Asians with vitiligo; social
comparison processes; appearance concern, hostility and social situations; scale development for intimate
behaviours; women with limb prostheses; appearance and rheumatoid arthritis; general practitioners’ beliefs,
experiences and training needs.
7

Participants were recruited from hospital out-patient clinics and from a variety of community
settings in Bristol, London and The Midlands. They ranged in age from 18-91 years.
Main findings
The results of all studies emphasise the importance of understanding the inner worlds of those
affected by appearance concerns – how the person engages with and interprets the world.
Adjustment and distress: People in the studies showed very variable profiles of adjustment and
distress and revealed characteristics of both more and less well adjusted people. Difficulties and
distress were often considerable. Previous studies have suggested women and people with
disfigurement of normally visible parts of the body are more distressed. However, in this
programme of research these differences were modest, and both men and people with normally
hidden disfigurements experienced significant distress.
Thought processes and behaviours: The importance of appearance related cognitions is
highlighted: the value attributed to appearance and the salience of it in processing information,
the way people process appearance-related information, and the gap between how they view
their appearance and how they would ideally like it to be. In people troubled by their
appearance, these thoughts take centre stage, and lead to a self-reinforcing cycle in which
(often negative) appearance information is frequently attended to and used in relating to the
world.
Features of positive adjustment: People who self reported as positively adjusted often described
the experience of disfigurement as one of personal growth, and reported a number of strategies
that appeared to work well: pragmatism, acceptance, determination, engaging with problems
and difficulties rather than avoiding them.
Ethnicity and cultural beliefs: Studies of beliefs and attitudes of those from minority ethnic
groups (with and without disfigurements) highlighted the influence of cultural and religious
beliefs on attitudes concerning the causes of disfiguring conditions (myths), the impact on the
family, and levels of social exposure.
Key messages from the research programme
• Adjustment to disfigurement is very variable, and, whilst many are well adjusted, there
are also high levels of distress.
• Relationships between adjustment, age, gender and other demographic features are
equivocal.
• The role of thought processes and interactions in mediating adjustment is clear.
• The media, society and culture contribute to pressure on those vulnerable to appearance
concerns.
• Support and intervention should be available at a range of levels of intensity to meet
various levels of need.
8

• Findings of the research programme support the need for interventions which seek to
address unhelpful appearance related thoughts and social behaviour. 3
• Continuing campaigning and publicity efforts are required to modify attitudes within
society and offset the effects of the media and culture.
• Important research remains to be done into key areas raised by the programme,
particularly measurement and intervention.
3 Alongside the research element of this programme, the research team have reviewed existing interventions based
on the research findings and devised an evidence-based intervention manual which is to be piloted in November
2009.
9

BACKGROUND & RATIONALE FOR THE RESEARCH PROGRAMME
Whether present at birth or acquired later in life, a visible disfigurement can have a profound
psychological impact on those affected. The charity Changing Faces estimates that in excess of
1 million people in the UK have a significant disfigurement to the face or body. The annual
incidence is 415,550 people who acquire either a significant transitory or permanent facial
disfigurement as the result of a congenital or birth condition, from trauma, disease (for example,
skin conditions, stroke, arthritis), or from medical or surgical interventions to treat other
conditions (for example, cancer). Research to date has focused predominantly on the
difficulties and distress resulting from visible difference. However, not all are equally affected
and a proportion adapt positively to the demands upon them, either restricting the impact of their
visible difference to a relatively minor role in their lives, or, in some cases, perceiving it as a
positive advantage.
There is a consensus amongst researchers and practitioners in the field that individual
adjustment to disfigurement is affected by a complex interplay of physical, cultural and
psychosocial factors (Moss, 1997; Clarke 1999; Endriga & Kapp-Simon, 1999; Thompson &
Kent, 2001; Rumsey & Harcourt, 2004). A comprehensive review of current knowledge is
beyond the scope of this report, and readers are referred instead to articles by members of this
collaboration and others, including: Moss (1997); Clarke, (1999); Newell, (2000); Thompson and
Kent (2001); Kent and Thompson (2002); Rumsey and Harcourt (2004; 2005); Thompson
(2009). Research has highlighted the probability that some factors contribute to the likelihood of
distress, whilst other factors may ‘buffer’ a person against the stresses and strains of living with
a visible difference. However, this research has been characterised by methodological
difficulties including small sample sizes, unrepresentative and predominantly white participants.
The results are therefore suggestive rather than definitive.
Factors identified in the literature to date
Physical and treatment-related factors
These include the aetiology, extent, type and severity of the disfiguring condition, and the
treatment history of each individual. Contrary to the expectations of the lay public and many
health care providers, the bulk of research, clinical experience and personal accounts written by
those affected, demonstrate that the extent, type and severity of a disfigurement are not
consistent predictors of adjustment, although the visibility of the condition can exacerbate
distress (Thompson & Kent, 2001; Rumsey & Harcourt, 2004).
11

Socio-cultural factors
These factors provide the context for adjustment, and include age and developmental stage,
gender, race, social class & cultural milieu. Also included in this category are parental and peer
group influences. In addition, many writers have pointed to the role played by the media in
creating and exacerbating the pressures on those distressed by their appearance – although the
impact of media and other socio-cultural factors has been shown to vary between individuals
(Tiggemann, 2004).
Psychological factors and processes
Factors in this category include the structure of a person’s self esteem and self-image (e.g. the
weight given to the opinions of others and to broader societal standards), a person’s
personality/disposition, coping repertoire, perceptions of social support, levels of psychological
well-being (e.g. anxiety, depression) and social anxiety, feelings of shame, and the perceived
noticeability of their visible difference to others. These factors can be broadly categorised as
affective (relating to feelings), cognitive (relating to thoughts) or related to behaviour, and are on
the whole more amenable to change than physical, treatment-related or socio-cultural factors
(Thompson & Kent, 2001; Rumsey & Harcourt, 2005). Fagervik-Morton’s (in preparation)
systematic review of the literature relating to adults with visible differences (which initially
examined 1191 potentially relevant articles, and a final inclusion of 12 studies) concluded that
the evidence was not sufficiently strong to draw firm conclusions about which factors exacerbate
distress/promote adjustment and whether variation is related to the structure and organisation of
appearance-related information. This review confirmed the existing conviction of this research
collaboration that an elucidation of these factors and processes should be a priority in this
programme.
Previous research has focused on the problems and difficulties associated with visible
difference. In addition, the large majority of participants in previous research have been
recruited from a population seeking treatment for their condition. In order to understand the
breadth of adjustment, it is also crucial to gather information from those who are not seeking
treatment and/or perceive treatment to be irrelevant in addressing their needs. Accordingly, this
research has also focused considerable recruitment effort on a sample drawn from the
community.
For the researchers and clinicians in this collaboration, the key priorities were, first, to clarify
those factors and processes that exacerbate distress and/or promote successful psychological
adjustment in people with visible differences, and second, by focusing on those factors which
are amenable to change, to use the resulting knowledge to inform the development and
refinement of a comprehensive range of methods of support and intervention designed to
promote positive adjustment.
Theoretical underpinning
12

The challenge of developing comprehensive models and theories to guide and underpin
research relating to appearance have been discussed by Thompson and Kent (2001) and
Rumsey and Harcourt (2005). Early cognition models of body image disturbance focused on
the discrepancy between an individual’s perceived actual and ideal selves, and described the
process by which an individual’s thinking can become more and more dominated by negative
thoughts about their appearance (Thompson et al 1999). Cash’s (1997) cognitive-behavioural
model recognizes that past, cultural and interpersonal experiences, physical characteristics and
personality attributes influence the development of body image attitudes and schema.
In relation specifically to disfigurement, perspectives on stigma (Goffman 1963), shame (Kent &
Thompson, 2002) and social exclusion (Leary 1990) have all informed the development of a
number of models. Some researchers (including members of this collaboration) have
developed models of the processes involved. For example, Kent (2002) proposed a model
centred around appearance anxiety and stigma. Newell (2000a) developed a testable
fear/avoidance model of social anxiety among people with a visible difference, proposing a
continuum of confrontational and avoidant responses (as opposed to discrete categories of
good or bad adjustment). More recently, Moss & Carr (2004) explored the use of the multifaceted
self-concept as a means of exploring adjustment to disfigurement. Other models have
attempted to explain appearance issues within specific condition or treatment groups (see, for
example, Sarwer et al (1997) in relation to the motivation to seek cosmetic surgery, White
(2002) in relation to cancer, Thompson (2009) in relation to skin conditions) rigorously
highlighting the influence of developmental, social-cultural and perceptual factors on body
image and self-esteem. Whilst models may help to organise collective thinking, they cannot, at
their current level of sophistication, provide a comprehensive representation of the complexities
of factors, the relationships between these factors and the dynamic nature of adjustment. To
date, no single model stands out as offering a comprehensive framework to guide research and
clinical intervention. The available models are either limited in scope, falling short of providing a
comprehensive understanding of individual experiences of appearance, or incorporate
constructs that cannot easily be measured/assessed. None of the existing models have been
tested on a large and diverse population of people with visible differences. However,
exploratory research has provided such a plethora of variables implicated in experiences and
adjustment, that it was considered timely to marshal them into a manageable format for the
purpose of guiding research.
Mindful of the need to share a common approach to this research and of the imperative to
inform interventions, the members of this collaboration adopted a pragmatic approach in
developing a framework to guide the current research programme. This approach integrated
the main findings and trends in this area of research, encompassing aspects of previous models
developed by members of the team and other leading commentators in the field. The
framework was designed to facilitate the identification and clarification of those factors which
have the potential to be amenable to change through psychosocial support and intervention,
either as an adjunct, or where appropriate, as an alternative to surgical and medical
intervention. In addition, and in contrast to previous research in this area, which has focused in
the main on the problems and difficulties associated with disfigurement, this programme aimed
13

to identify and clarify factors contributing to ‘resilience’ and positive adjustment. The result was
a descriptive, working framework of inputs, mediating processes and outputs designed to be
broad enough to capture the range of experiences of those affected, but specific enough to
allow for predictions about the susceptibility to distress or positive adjustment of those affected
by a visible difference. The framework was used to consider the emerging findings of the
project, and was further refined during the analysis process (Figure 1).
14

STAGE ONE
(Inputs/Predisposing
Factors)
Demographics
Parental influence
Peer influence
Societal and Media
Influence
Cause of
Disfigurement
STAGE TWO INTERVENING
COGNITIVE PROCESSES
Appearance Schema
Salience
Valence
Perceived
Noticeability
Ideals
Self
Cultural
Social Comparison Processes
Dispositional Style
Coping Strategies
Perceptions of Social Support
Figure 1: Working framework of adjustment to disfiguring conditions
STAGE THREE
(Outcomes)
Social Anxiety
Social avoidance /
isolation
Psychological
wellbeing
Within this framework, the process of adjustment to visible differences is conceptualised as
having three facets. The first is the social and psychological context comprised of predisposing
factors such as demographic characteristics, socio-cultural setting, and family environment.
While all of these factors play a part in adjustment and an understanding of their influence is
important, their relative impermeability may make them less amenable to intervention. The
current programme of research therefore acknowledges the presence and influence of these
factors, but maintains a predominant focus on cognitive and behavioural processes, which are
more amenable to change through interventions.
The second facet of the model comprises intervening cognitive processes, which are believed to
contribute to the differentiation between good and poor adjusters. We believe that these are
best understood from a social cognition perspective, with particular reference to the functioning
of the self-concept. From this viewpoint, individuals can be conceptualised as having a
cognitive representation of themselves, which includes a representation of appearance. The
appearance aspect of the self-representation can be more or less salient at any time, and thus
play a greater or lesser part in the working self-concept (Higgins & Brendl, 1995). As a result of
this, there will be variation in the extent to which a person’s perception of their own appearance
is involved in attending to and appraising activity in the social environment and in subsequent
memories of past experiences (Moss & Carr, 2004 Bargh, Lombardi & Higgins, 1988). In
addition to the salience of appearance within the self-concept, there can also be a variation in
the evaluative valence of the appearance (i.e. the way a person looks can be seen by that
person in a positive or negative light (Sarwer & Crerand, 2004)). Appearance can also be
judged by individuals as being closer to, or further from their internalised cultural ideals (Altabe
& Thompson, 1996). When appearance is generally more salient, negatively valenced, and
further from ideals, adjustment will be poorer. Some of the important ways in which appearance
can be made more salient and prone to negative evaluation include social comparison
processes (Green & Sedikides, 2001) and positive or negative experiences of social
15

encounters, as well as subjective perceptions of the perceived severity and the perceived
noticeabilty of the disfiguration to others (Rumsey et al, 2004). Other more stable variables,
such as attributional style (Crocker et al, 1991), some coping processes (Fauerbach et al,
2002), and perceptions of social support (Robinson, 1997) may also serve to exacerbate or
ameliorate distress (see also Moss, 1997). As members of this collaboration recognised the
need to provide knowledge that would inform effective interventions, particular attention was
paid to those cognitive processes which are amenable to change, including salience, valence,
perceived noticeability and severity, and the relation of the appearance evaluation to subjective
individual and perceived cultural ideals and norms, and the way in which social comparison
relates to these. The research programme also provided the opportunity to assess the value
and utility of conceptualising adjustment in this way.
The third facet of the model is the observable and experienced effects of appearance concerns.
Existing work has already demonstrated the importance of social anxiety and avoidance (for
reviews, see Thompson & Kent, 2001; Rumsey & Harcourt, 2004), and to a lesser extent shame
and hostility (Kent & Thompson, 2002). Although conceptualised here as outcomes, it is
acknowledged that these constructs also serve a function in setting the psychological context for
the cognitive processes described above. For the purposes of modelling they are represented
here as outcomes, but there is an ongoing debate amongst researchers in the area (including
those in this collaboration) and most are of the view that they are not simply the last links in a
chain, but part of a dynamic process in which experience informs cognitions.
Design considerations in the research process
The use of mixed methodologies
This research collaboration has adopted a mixed methods approach. Debate concerning the
relative merits of quantitative and qualitative methods has ranged for some time, and has been
termed by some “the paradigm wars” (Dures, 2009). In the recent past, quantitative and
qualitative approaches were viewed by many as incompatible as the two approaches are
underpinned by different sets of assumptions about what knowledge can be acquired and the
methods of acquiring it. However, there is now widespread recognition that adherence solely to
one or other set of assumptions can impose an unnecessary rigidity on research. Research in
‘real world’ settings, particularly research which is orientated to client needs rather than driven
primarily by academic concerns, requires a flexible approach that can cope with complex, multifactorial
issues and takes practicalities into account (Dures, 2009). The current consensus is
that both methodological approaches have merits, particularly in research in which pragmatism
and critical realism have a place (Denscombe, 2008). Proponents of mixed methods argue that
understanding can be enhanced to a greater extent through the use of both approaches rather
than by one in isolation, but also believe that their use should be justified in relation to the
research question and that the rationale should be clearly specified. Johnson, Onwuegbuzie
and Turner (2007) have defined mixed methods as ‘a third methodological or research
paradigm…that will often provide the most informative, complete, balanced and useful research
results’ (p129). The different studies should talk to each other, much like a conversation
(Bryman 2007).
16

In order to address the first aim of this research programme (to identify psychosocial factors and
processes contributing to adjustment), and in view of the small sample sizes used in previous
research and the tentative nature of previous conclusions, a strong driver for the research
collaboration was to generate a large sample size. In addition, we wished to generate sufficient
participant numbers to assess the utility of our conceptual framework. Having made the decision
to undertake a large scale, quantitative study with only a limited qualitative element, a series of
follow-on studies were designed using a variety of predominantly qualitative methodologies.
These were intended to generate a more in-depth understanding of particular topics and to
illuminate the detail of individual experience. The studies were developed in order to expand
understanding of elements of the framework, including a qualitative study of those identifying
themselves as positive adjusters (Study 4), the particular issues relating to ethnicity (Studies 5 &
6), a study of social comparison processes (Study 7) and an examination of appearance
concerns and aggression (Study 8). In response to the progamme advisory panel, work was
initiated to develop a measure of the role of appearance concerns in intimate relationships
(Study 9), the appearance concerns of people with prosthetic limbs (Study 13) and to better
understand the beliefs, decision making processes and training needs of general practitioners
(Study 12). In addition, the role of appearance concerns in adjustment for those with
rheumatoid arthritis was examined as a particular example of the potential interplay of functional
and appearance concerns (Study 11).
Amongst others, Thompson and Kent (2001) and Rumsey and Harcourt (2005) have noted the
pressing need for longitudinal research to explore the dynamic, fluctuating nature of adjustment
in relation to disfigurement. Accordingly it was also a priority for the collaboration to include
such an element in the programme of research. Study 3 explores the issue of stability and
change in adjustment over time.
For a diagrammatic representation of the studies included in the research programme, see
Figure 2.
17

Study 3 Study 4 Study 5 Study 6 Study 7 Study 8 Study 9 Study 10 Study 11 Study 12 Study 13
Longitudinal
(n = 365)
Cross
Sectional
survey
completed
again at 9
months
Stability &
change
(n = 26)
In depth
interviews
& template
analysis
Positive
adjusters
(n = 12)
Focus
groups
with self
identified
as
positive
adjusters
Ethnicity
(n = 63)
Focus groups
with BME
groups re:
disfigurement
Figure 2: Representation of the research programme
Studies 1 (Quantitative) and 2 (Qualitative)
Multi site cross sectional investigation of psychosocial factors and processes contributing to adjustment (n = 1265)
UK South
Asians
with
vitiligo
(n = 7)
In depth
interviews
and
template
analysis
Social
comparison
(n = 13)
Online
survey
Appearance
concerns &
aggression
(n = 38)
Online
survey
INTERVENTIONS
Intimacy
(n = 145
students, n =
42 patients)
Development
of a scale
Women
with
prostheses
(n = 6)
In depth
interviews
& thematic
analysis
Rheumatoid
Arthritis
(n = 49)
Survey
Training
needs of
GPs
(n = 30)
Survey
with case
scenarios
18

Role of the advisory panel in the research process
The Advisory Panel included three representatives with experiences of living with different types
of disfigurement. Additional members included a collaborating GP and the Chief Executive of
The Healing Foundation. Two plastic surgeons showed initial interest in joining the Advisory
Panel, however, despite repeated invitations to engage with the project in the first 12 months,
were unable to contribute. Accordingly, a third Consultant Plastic Surgeon who was a member
of the Steering Committee for The Centre for Appearance Research (CAR) was kept abreast of
developments in the project, and offered comments as appropriate. The panel met for the first
time in Spring 2006. The project team presented their plans for Study 1, including the draft of
the questionnaire pack, and the letter, information and consent sheets to be given to potential
participants. Panel members offered constructive comments on the letters and questionnaires,
and where feasible, appropriate changes were incorporated into the final versions. It was also
suggested that the community sample be expanded to include more user groups, as the
experience of panel members was that the possibility of participating in research was perceived
as a welcome opportunity to increase understanding of the experiences of people with
disfiguring conditions. Following the meeting, a preference for individual rather than collective
meetings was expressed by members of the advisory panel. Accordingly, the Project Lead met
with panel members individually during February/March 2007 to summarise the results of the
preliminary analyses from the cross-sectional study (Study 1), and to discuss plans for the
follow-up studies and for the intervention strand of the project. At this point, two members
suggested the inclusion of a study on the effects of appearance concerns on intimate
relationships, and one was especially supportive of the idea that a study of people using
prosthetic devices would be useful. The lack of knowledge and understanding amongst GPs
about the impact of visible disfigurements was also highlighted. These ideas were all
incorporated into follow-on studies within the programme. Panel members were consulted on
an individual basis once more in June/July 2009, at which time the results, plans for outputs and
dissemination, and plans for further research were discussed and finalised.
In summary, the following actions were taken in response to advice from the Advisory Panel:
• Changes to recruitment letter to the community sample
• An enlarged base for the recruitment of the community sample to include more user
groups
• The initiation of a study on the role of appearance and intimacy
• An exploration of the knowledge of General Practitioners in relation to disfigurement
• Inclusion of a study of experiences of people with prosthetic devices
• Inclusion of prosthetists, psychiatrists and primary care workers in plans for
dissemination
19

Challenges encountered during the research process
It is inevitable in a large scale multi-centre programme of research such as this that in addition
to the added value of the pooled expertise of the collaborators, and the increased possibilities
for sampling, a number of challenges will be encountered. The most significant challenges and
the solutions adopted are outlined briefly below. Those associated with the design and analysis
stages are described in the relevant sections later in this report.
Initial delays in the contracts & appointments process
Unexpected delays were encountered in relation to the subcontracts set up between UWE (the
lead centre and central budget holder) and the Universities of Warwick, UCL, Sheffield &
Bradford. These delays meant that the appointments of the researchers at all sites were also
delayed. Dr. Antje Lindenmeyer began work in Warwick in July 2006, Dr. Sally Clarke
(Sheffield/Bradford) and Hayley James (UCL/Royal Free) took up their posts at the beginning of
October 2006.
This delay in the contracts process (and consequently in recruitment start-dates) meant that the
longitudinal element of Study 1 had to be shortened in order to fit the funding life of the project.
Data was collected at 9 month follow-up, instead of 12 months as originally planned.
Ethical and research governance approvals
As the Project Team realised that the ethical approvals would be complex and time consuming
in view of the large number of participating centres, the process of gaining approval was started
soon after confirmation of the award of the grant and prior to the appointment of Research
Associates and Research Assistants. Dr. Diana Harcourt (UWE, Bristol) led the process of
achieving the necessary ethical and research governance approvals for the project, with the
regional Principle Investigators completing site specific applications for ethics and governance
approvals. The approvals were achieved with only minor changes to protocols. Subsequent
delays were those inherent in the approvals process at that time. COREC approval for the first
two studies was achieved in May 2005, with subsequent LREC and local research governance
approvals achieved between November 2005 and October 2006. The vast majority of approvals
and of the honorary contracts, criminal records bureau checks necessary for all the researchers
were also achieved by this time.
Staffing
Dr. James Byron-Daniel (the Lead Researcher) applied for a lecturing post at UWE nine months
after the beginning of the project, and was appointed in September 2006. James subsequently
joined the UWE staff team involved in the project. Liz Payne (now Jenkinson), who was
originally the project administrator acted-up in the role of Lead Researcher, and following a
formal selection process, was appointed to the post in 2007. She has been supported by Emma
Williams and Eleanor Walsh in an administrative capacity. The handover in responsibilities was
smooth, and the team was fortunate that Liz was over qualified for her initial role. Liz
established excellent relationships with the researchers appointed to the other centres, and her
performance in this role has been key in the success of the project. The collaboration was also
fortunate in relation to its other research associates and research administrators, and great
20

credit is due to Anjte Lindenmeyer, Sally-Ann Clarke, Hayley James, Krysia Saul, Emma
Williams and Eleanor Walsh for their tenacity and hard work for the duration of this project.
Other major tasks associated with the research
• Establishing and maintaining effective working relationships (research assistants; project
partners). This was addressed by:
o Facilitating communication between team members (regular phone calls, emails
and workshops
o Setting up of a project blog:
http://carhealingfoundationproject.blogspot.com/
managed by the Bristol team. This blog provided a forum all the project team
members for updates, news and on-going discussions.
• Training of research assistants in data base management; recruitment techniques;
interviewing skills and qualitative analysis
• Agreeing recruitment strategies and establishing relationships with general practice
partnerships (Bristol & Warwick), key clinicians (Bristol, Sheffield, Bradford, UCL, Royal
Free London)
• Constructing and managing a database large enough to cope with over 300,000 data
entry points
o Access data base training (data base management) was undertaken by the
Bristol based team researchers
• Agreeing the collaborative approach to data analysis
• Agreeing publications and dissemination strategies (see Appendices 1 and 2)
• Co-ordinating the project timescales and agreeing a common reporting format for followon
studies
21

STUDY 1
FACTORS AND PROCESSES INVOLVED IN ADJUSTMENT TO
DISFIGUREMENT:
A CROSS-SECTIONAL STUDY
23

INTRODUCTION
The largest part of the research programme in terms of time and resources comprised a crosssectional
multi-centre study. As discussed in the Background section, previous work (Carr,
Harris & James, 2000;, Thompson & Kent, 2001; Rumsey et al, 2004; Carr, Moss & Harris 2005;
Fagervik-Morton, in preparation) has provided data on the prevalence and consequences of
appearance concerns in people with a range of disfiguring conditions. However, this research
has also raised many questions about the psychological factors and processes underpinning the
considerable variation in adjustment, which could only be answered through a large data set. In
addition, a large sample size was needed to allow an investigation of condition specific effects
and a more detailed examination than hitherto of the impact of non-clinical and nonpsychological
variables (for example, age, gender and social economic status) on adjustment.
Key research questions
• What is the prevalence of adjustment and distress in participants recruited from the
community and from hospital out-patient settings?
• What psychosocial factors and processes are associated with positive adjustment and
distress in people with visibly disfiguring conditions?
The large scale nature of the study dictated a predominantly quantitative approach, however,
mindful of the need to capture the large range of individual differences in experience and the
potential richness of qualitative data, we also included an open ended response box to offer an
opportunity for a qualitative element in the data collection (see Study 2).
METHODS
Sample and recruitment
Visible differences result from a wide variety of congenital anomalies (e.g. a cleft of the lip;
neurofibromatosis), illnesses (e.g. arthritis), chronic conditions (e.g. vitiligo, acne), injuries (e.g.
burns), or surgical interventions (e.g., following surgery to remove malignant tumours). In order
to sample as widely as possible, the project was organised around four geographical regions:
Bristol (lead site), London (site 2), Bradford/Sheffield (site 3), and Warwick (site 4), with each
site working to promote a broad spread of respondents at various stages of the treatment
journey.
As the opportunities for recruitment through clinics and the community varied between hospitals
and geographical regions, and as the organisational and logistical constraints affecting
recruitment were different in every site, the regional principal investigators negotiated the
practical details of sampling and recruitment on a local basis, within the framework agreed for
the whole study (i.e. target numbers for each condition, inclusion and exclusion criteria and
ethical guidelines for the research).
24

Inclusion criteria
Participants were men and women aged 18 years or over, with fluency in written and spoken
English, who perceived themselves as having a visible difference. (The resources necessary to
study children and adolescents are considerable, and data collection is complicated by the need
for specialist interviewers and age appropriate assessments. It is anticipated that subsequent
studies focusing specifically on adjustment in children and adolescents will be informed by this
research programme).
Exclusion criteria
Participants with identifiable psychosis or dementia were not included in this research. In this
study, participants unable to read and write in English were excluded, as there were no
measures (with the exception of HADS) available which were equivalent to those selected for
the study which had been validated in non-English languages. Adequate representation of
members of ethnic minority communities was promoted by actively seeking those who were
able to read and speak English, as the research collaboration recognised that an understanding
of cultural differences is an important gap in the existing body of knowledge about adjustment to
problems of appearance. Further efforts were made to address this in follow-on studies 5 & 6.
Sampling through outpatients clinics
As in previous studies, out-patient clinics were approached as a cost effective means of
accessing patients seeking medical intervention. A wide range of clinics was targeted as
potential sites for recruitment and each site organised recruitment in local clinics, overseen by
the regional principal investigator. Out-patients clinics taking part were as follows:
• Sheffield/Bradford: head and neck cancer, prosthetics, dermatology, ophthalmology and
general plastics (plastics & burns), cleft lip & palate clinics [trauma/ENT].
• London: general plastics, ocular plastics, ocular prosthetics and rheumatology clinics.
• Bristol: laser, general plastics, skin cancer and ophthalmology clinics
In total, 650 participants were recruited via out-patient clinics, from London, Sheffield/Bradford
and Bristol sites. Respondents were 393 women (60.4%) and 234 men (35.9%), ranging in age
from 18-91 years (M= 49.7 years, SD= 16.9 years). Further demographic details are included in
the results section of this report.
Sampling through non-medical sources (the ‘community’ sample)
In previous research, the emphasis has been on those attending for treatment (particularly
hospital out-patient clinic attendees). Despite the associated challenges, it was considered a
priority to learn more about the broader constituency of people with visible differences, and in
view of the commitment of the collaboration to focus on positive adjustment, to also sample
those who were not actively seeking treatment or intervention at the time of participation. This
type of recruitment is more challenging, and several strategies were considered by the
collaboration, including the distribution of study materials on a house to house basis,
recruitment via relevant self-help groups, through advertisements on the internet, and through
local media. In the end, participants were recruited via city centre and rural GP practices in the
25

South West (via the Bristol site) and through practices in the Midlands (via the Warwick site).
As recruitment (particularly in the Midlands) was slow to pick up, additional recruitment was
achieved via advertisements on the websites of self help groups and through press releases in
local press.
In total, 615 participants were recruited via the community, from the Warwick and Bristol sites.
Two large GP surgeries (one rural and one urban) were involved from the Bristol region and 10
surgeries across the Midlands.
Four hundred and seventy four respondents were women (77.2%) and 120 were men, ranging
in age from 18-89 years (M=44.9 years, SD=16.2 years). Further demographic details are
included in the results section of this report.
Sample size
Estimates of the number of people affected by various forms of visible difference vary, as do
methods of categorising them on the basis of the type of disfigurement (for example,
categorisation on the basis of a specific condition such as vitiligo, or according to a broader
categorisation such as ‘skin conditions’). As a result, notions about the most appropriate
sample size needed to adequately represent the population of those affected and of the
numbers needed to demonstrate similarities and differences between types of disfigurement are
fluid. As there is now a broad consensus in the literature that condition specific effects play a
much more minor role in adjustment and distress than psychological and socio-cultural factors,
the benefits (compared to the costs) of exhaustive sampling by types and subtypes of condition
are questionable. It was therefore agreed that a spread of conditions would be sampled, with
differing out-patients clinics targeted by each site.
Sample size calculations relied on the previous experience of the group, and on the assumption
that within the largest study (Study 1), for the clinic sample, a minimum of 12 ‘conditions’ would
be sampled. An a-priori power analysis for multiple regression (assuming standard levels of
significance and a power of 0.95) indicated that in the presence of small effects (for example, Rsquare
-.04) a minimum sample size of 851 cases would be needed to assess the significance
of up to 25 variables in a global hypothesis test. This allowed a range of superficially different
types of disfigurement to be examined and meaningful comparisons of subgroups to be made,
together with a purposive sampling of subgroups of participants for the qualitative and
longitudinal studies. A process of quota sampling for rarer conditions was adopted in order to
facilitate statistical analysis, with a minimum target of 30.
Materials
Written information
A standardised pack of written information and questionnaires was distributed to all participants.
This included an information sheet clearly stating principles relating to identity protection, the
right to withdraw from studies at any time, and procedures for the storage and destruction of
records. There were minor changes in this information between sites (i.e. university contact
26

information, names of consultants collaborating, etc). A consent form and a form to consent to
be contacted about further studies were also included.
Measures
In order to adapt the conceptual framework (Figure 1) adopted by the research team for data
collection and analysis purposes, it was necessary to consider how best to operationalise the
variables (see Figure 3).
The decisions relating to the choice of measure and the designation of variables as ‘process’ or
‘outcome’ generated considerable debate within the collaboration and among the Advisory
Panel. Guiding principles included a primary focus on variables which were considered
modifiable through intervention and on questionnaires which had face validity for participants
and which were straightforward to complete. ‘Generic’ questionnaires (e.g. the HADS) enabling
comparisons with previous research and with reports of adjustment to a range of other
conditions were also included. The inclusion of measures which included the possibility of
capturing profiles indicative of positive adjustment was also a priority. This was particularly
challenging as many of the questionnaires used in previous research have an exclusively
negative focus. In the case of variables for which suitable measures did not exist (for example,
the issue of social acceptance of a disfiguring aspect of appearance), questions based on the
previous literature and on the research and clinical experience of the group were constructed to
capture participants’ responses. Other considerations included the overall number of
questionnaires that should be included in the participant packs, and the burden on participants.
For full questionnaire booklet see appendix 3.
27

INPUTS/
PREDISPOSING
FACTORS
Age
Gender
Ethnicity
Visibility to others
Living Status
Cause
Treatment
Figure 3: Operationalising the Framework – Choosing appropriate measures.
PREDISPOSING FACTORS:
INTERVENING COGNITIVE
PROCESSES
Dispositional Style (LOT-R)
Socio-cognitive Factors
Perceptions of Social Support
Perceptions of Social Acceptance
Fear of Negative Evaluation (FNE)
Appearance schema:
Appearance – Related
Processing
Salience (CARSAL)
Valence (CARVAL)
Disguisability
Self / Ideal Discrepancy (PADQ)
Social Comparison (INCOMM)
OUTCOMES
Social Anxiety / Social
Avoidance (DAS)
Aggression/ Hostility (RAQ)
Wellbeing (HADS)
Mood (PANAS)
Demographics
Participants were asked to indicate their postcode, age, gender, family status/living
arrangements, nationality and ethnicity.
Participants were also presented with two open ended questions at the close of the
questionnaire. The first asked for feedback about the questionnaire pack and the second asked
if the respondent had any general comments about the way their appearance does/does not
affect their life positively or negatively (see Study 2).
Cause
Participants were asked to select a cause of the main difference in appearance from a list of 11
options (including ‘other’ with room to specify).
Treatment information
Participants were asked to state whether they had received treatment to change their
appearance and if so, the earliest and latest dates these treatments were received. They were
also asked to state if they were awaiting any treatments.
Area of appearance concern
Participants indicated their area of concern by ticking on a checklist the parts of their body about
which they were most sensitive. These were later classified into the broad headings of visible to
others/difficult to disguise (face, hands, neck, head) and non-visible (easier to disguise).
28

INTERVENING COGNITIVE PROCESSES:
Dispositional style
Optimism
To assess levels of optimism a shortened four item version of the Life Orientation Test-Revised
(LOT-R; Scheier, Carver & Bidges, 1994) was utilized. Responses were on a five point Likert
scale, ranging from 1 (strongly agree) to 5 (strong disagree). Total scale score range from 4-20
with higher scores indicating a more optimistic outlook. The scale is designed to be viewed as a
measuring a continuum, with no "cut-offs" for optimism or pessimism. Scheier, Carver and
Bridges (1994) demonstrate adequate internal consistency (alpha=0.78) and test-retest
reliability that indicates stability over time (r=0.68 at 4 months, r=0.60 at 12 months, r=0.56 at 24
months, r=0.79 at 28 months).
Socio-cognitive factors
Social networks
The scale utilized is a shortened four item version of the Short Form Social Support
Questionnaire (Sarason, Levine, Basham & Sarason, 1983). The quantity responses were
considered primers and were not included in the analysis. Quality ratings ranged from 1 (very
satisfied) to 6 (very dissatisfied), scores ranged from 4-24, with higher scores representing
greater satisfaction with one’s social network. The authors cite that the scale showed good test
retest reliability, with a 4-week retest yielding 0.83 coefficient and good internal reliability (alpha
coefficient=0.97).
Feelings of acceptance
To assess feelings of social acceptance two items with a seven point Likert scale ranging from 1
(not at all) to 7 (completely), assessed the extent to which the respondent felt accepted by their
social group and society in general. Total scores range from 2-14, with higher scores indicating
higher levels of acceptance.
Fears of negative evaluation
The Brief Fear of Negative Evaluation (FNE) scale (Leary 1983) examines whether concern
about other people’s opinions regarding oneself is a characteristic of the individual. 12 items are
presented and participants asked to score each statement from 1 (Not at all characteristic of
me) to 5 (Extremely characteristic of me). Scores range from 12-60 with high scores indicating a
greater fear of negative evaluation. The authors cite adequate psychometric properties, with
high levels of internal consistency (alpha=0.90), a 4-week test retest reliability with a student
population yielding a 0.75 reliability coefficient and acceptable levels of construct validity.
29

Appearance-related processing
Valence of appearance
The CARVAL (Moss, Hobbs & Rosser, in preparation) is a six item valence questionnaire that
measures how positively or negatively a participant evaluates their own appearance.
Responses range from 1 (strongly disagree) to 6 (strongly agree) with higher total scores
indicating a more positive self evaluation of their own appearance. Potential scale scores range
from 6-36. The scale has recently demonstrated good internal consistency (alpha=0.89) and
very good test retest reliability with a student population at three months (r= .95)
Salience of appearance
The CARSAL (Moss, Hobbs & Rosser, in preparation) measures the extent to which
appearance is part of a person’s working self concept or how important it is to a person
(salience). Response ranged from 1 (strongly disagree) to 6 (strongly agree) with higher total
scores indicating appearance forming a greater part of their self concept. Potential scale scores
range from 6-36. The scale has recently demonstrated good internal consistency (alpha=0.86)
and good test retest reliability with a student population at three months (r= .89).
Disguisability
By rating on a seven point Likert scale ranging from 1 (extremely easy) to 7 (impossible)
participants were asked how difficult they felt it was to hide or disguise the aspects of their
appearance about which they were most concerned.
Physical appearance discrepancy
The PADQ (Altabe, 1996; Altabe & Thompson 1996) distinguishes the discrepancy between
how a person perceives they look and how they or their significant others would ideally like them
to look (‘ideal’ discrepancy) or how they ought to or should look in relation to duty, responsibility,
or obligation (‘should’ discrepancy). A high ‘ideal’ discrepancy is associated with feelings of
disappointment, dissatisfaction, shame and embarrassment due to unfulfilled desires and a
belief they have lost esteem in the opinion of others. A high ‘should’ discrepancy is associated
with fear, feeling threatened, resentment and guilt due to the belief that they have transgressed
the moral standard of either themselves or significant others. The two subscales of ‘ideal’ and
‘should’ discrepancy consist of 4 items each, with responses ranging from not at all different to
extremely different yielding a total score for each subscale ranging from 4-28, with higher score
indicating greater discrepancy.
Social comparison
The social comparison scale is a brief version of the Gibbons and Buunk (1999) Iowa-
Netherlands Social Comparison measure (INCOMM). The scale measures frequency of social
comparisons. Participants were asked to complete the scale in reference to their appearance
and responses range from 1 (strongly disagree) to 5 (strongly agree) with higher total scores
indicating a higher frequency of engagement in social comparison. Potential scale scores range
from 11-55. The scale has good internal consistency (alpha=0.83) and concurrent validity
30

(r=0.88). The authors also cite adequate test retest reliability for up to four weeks and one year
as yielding correlation coefficients of 0.71 and 0.60 respectively.
OUTCOMES
Social anxiety and social avoidance
Derriford Appearance Scale Short Form (DAS24; Moss, Harris & Carr, 2004).
The DAS24 is a 24 item version of the DAS59 (Carr, Harris & James, 2000) and is a measure of
social anxiety and social avoidance in relation to appearance. It has been widely used in
research related to disfigurement in the recent past. Norms derived from UK populations exist.
Total scores range from 11-96 with lower scores representing low levels of social anxiety and
social avoidance. It has adequate internal consistency (alpha=0.92), test retest reliability
(r=0.82), concurrent validity with the DAS 59 (r=0.88) and convergent validity with measures of
anxiety, depression, social avoidance, social distress, fear of negative evaluation, negative
affect and shame (r11 indicates ‘caseness’, a high
likelihood that a person would be diagnosed to be suffering from clinical anxiety or clinical
depression.
Literature reviews of the HADS (e.g Bjelland, Dahl, Haug and Neckelman 2002) have found the
HADS to consistently show adequate internal consistency over a range of studies, including
those translated into languages other than English and good concurrent validity when compared
to a range of other anxiety and depression scales (r=0.60 to 0.80). The HADS has also been
used to good effect in previous studies with people with facial disfigurements (Newell, 2000b,
Newell and Clarke 2000), and validated for use with people with visible difference (Martin and
Newell 2004).
31

Anger/hostility
The Refined Aggression Questionnaire (RAQ) (Bryant and Smith 2001) is a brief version of
Buss and Perry’s (1992) Aggression Questionnaire and has been found to have similar
psychometric properties (Bryant and Smith 2001). This aggression scale uses 12 items to
assess whether aggressive behaviour is characteristic of the respondent, with responses
ranging from strongly disagree to strongly agree. Divided into 4 factors, physical aggression,
hostility, verbal aggression and anger each factor has an individual score with lower scores
representing lower levels of that particular type of aggression. The scale score ranged from 3-15
after appropriate item score reversals.
PROCEDURE
Research governance
Ethical approval for the study was given by NRES (one original application for all centres was
granted by COREC in addition to site specific approvals from each trust and data collection site)
and each corresponding university ethics committee for the research sites (five applications).
Criminal Records Bureau checks and honorary contracts with each NHS trust for each
researcher recruiting in clinics were also secured.
As the research programme developed, the lead site (UWE) was also required to apply for
substantial and minor amendments to NRES to undertake the follow-on studies (six
amendments in total). All additions and minor changes to the original protocol (for example, the
reduction of the longitudinal data point for the cross sectional questionnaire to nine months from
12 months) were agreed by NRES and local university ethics committees. For copies of the
main ethical approvals and amendments see appendix 4.
Protocols relating to recruitment
Outpatient clinics
Patients attending the participating out-patient clinics were sent invitations to take part along
with an information sheet (see appendix 5) two weeks prior to their appointment. The researcher
approached potential participants on the day of their appointment explaining the nature of the
study and answering any potential questions. Once informed consent (see appendix 6 for
consent form) was obtained, participants were given a questionnaire booklet either to complete
in clinic or to be taken away and sent back via freepost envelope. All participants took part on a
voluntary basis and were not remunerated for their participation.
Once received, data was stored securely (see below), receipt was logged and thank you letters
were sent to each participant.
32

Community recruitment
In the South West (coordinated by the Bristol site), READ codes (used by some GPs to classify
patients by condition) were used to identify possible participants with conditions that were
potentially disfiguring. In the Midlands (coordinated by the Warwick site), participants were
recruited through face to face approaches in practice waiting rooms and via leaflets and posters
displayed in surgeries and community centres. Some participants also responded to adverts
placed in the press, online or in local areas (such as community notice boards).
In the South West, all patients that were identified via READ codes were sent the standardised
pack including invitation letter, information sheet, consent form, further studies form and
freepost envelope. Participants were asked in the letter to consider taking part, and if they were
willing, to complete all forms and measures and return in the freepost envelope.
In the Midlands, researchers were present in GPs surgeries and all attendees during a given
time period were given an information sheet and asked to consider taking part. If they were
interested and eligible, the researcher explained the nature of the study and answered any
questions. Once informed consent was obtained, participants were given a questionnaire
booklet either to complete in the surgery or to be taken away and sent back via freepost
envelope.
Those participants who volunteered as a result of advertising were sent packs via post (using
the same method as in the South West GP recruitment) and were given the opportunity to
speak to a researcher via email or telephone. Those recruited from adverts or websites, and
who had with no named health professional contact received the same pack as all other
participants, with the addition of a section on the consent form to provide us with a GP contact.
This contact was informed of these participants engagement in the project.
In all cases, participants took part on a voluntary basis and were not remunerated for their
participation. Once received, data were stored securely (see below), receipts were logged and
thank you letters were sent to each participant.
(For full details of protocols, see Operating Manual in appendix 7)
Data handling, entry and storage:
The data were entered by the four researchers at each of the research sites using a common
database architecture designed by the project statistician and researchers from the Bristol team.
The data were subsequently merged and held by the Bristol team. All data were entered and
stored in a way in which participants' identities were protected, and in full compliance with the
Data Protection Act. No identifiable information was used other than a participant code. A key
list of participant names and identification codes was kept separately and securely at the Bristol
site. It was considered necessary to retain this information to enable sub-samples of participants
to be invited to participate in the follow-on studies. This key and any other identifiable data from
the follow-on studies will be destroyed at the completion of the analysis process.
33

RESULTS
Due to the size of the data set and the number of variables, it would be unwieldy to include all
analyses in this report. We have therefore chosen to present the ‘highlights’ in this section. We
have also been selective in our choice of illustrative tables and figures, frequently including most
relevant to the DAS 24 as this is the only standardised measure developed specifically to tap
distress associated with disfigurement. To facilitate the reader, the results and analyses are
presented in the following order:
1. Participants
2. Missing Data
3. Internal Consistency
4. The Relationship Between Variables
5. Demographic Factors
6. Visibility and Areas of Concern
7. Dispositional Factors
8. Socio-Cognitive Factors
9. Appearance-specific Cognitive Factors
10. Regressions by Outcome Variable
11. Clinic specific data
1. Participants
A total of 1265 participants took part in the study, 615 of which were from the community and
650 from out-patient clinics.
867 of the whole sample were female (68.5%), 354 male (28.0%). 474 of those in the community
sample were female (77.2%), 120 were male (19.5%). Similarly, 393 of those in the clinic sample
were female (60.4%), 234 were male (35.9%).
The mean age of the whole sample was 47.3 years (range 18-91, SD 16.7 years) with the mean
age in the community sample 44.9 years (range 18 – 91; SD 16.2 years), marginally lower than
in the clinic mean age 49.7 years ( range 18 – 89; SD 16.9 years).
783 (61.9%) of the whole sample reported being married or living with partner, 183 (14.6%)
living with friends or relatives and 287 (22.9%) living alone.
81% of the whole sample were white, with the other 12% either Pakistani, Indian, Black
Caribbean, Black African or other, 7% did not state their ethnicity. The percentages are similar in
both the clinic and community sample.
34

Table 1.1 Sample means and standard deviations for outcome measures according to method of
recruitment
Clinic
Community
M(SD)
M(SD)
DAS24 41.26(16.38) 43.44(15.97)
Anxiety 7.96(4.74) 8.46(4.50)
Depression 5.00(3.76) 5.21(3.77)
Aggression 25.15(9.35) 25.59(9.37)
Negative Affect 31.88(8.99) 31.27(8.70)
Positive Affect 19.71(8.61) 20.55(8.60)
Table 1.2 Sample means and standard deviations for outcome measures according to geographical area
of recruitment
N DAS Anxiety Depression Aggression Positive Negative
M(S.D) M(SD) M(SD) M(SD) Affect Affect
M(SD) M(SD)
London (UCL) 228 44.25(17.09) 8.41(4.63) 5.19(3.86) 25.36(8.96) 31.76(8.81) 20.99(8.64)
Warwick 357 43.93(16.35) 8.93(4.61) 5.64(3.83) 26.38(9.43) 30.53(8.76) 21.52(9.01)
Bristol 396 41.27(15.71) 7.91(4.48) 4.58(3.53) 24.07(9.06) 32.29(8.72) 19.08(8.09)
Sheffield/
Bradford
280 40.16(15.68) 7.52(4.75) 5.08(3.86) 25.89(9.85) 31.79(9.08) 19.05(8.46)
Figure 4.1(a) Comparative box-and-whiskers plot for DAS24 by geographical location.
35

Figure 4.1(b) Comparative box-and-whiskers plot for HADS Anxiety by geographical location
Figure 4.1(c) Comparative box-and-whiskers plot for HADS Depression by geographical location
There were no statistically significant main effects for method of recruitment or geographical
location on any of the outcome measures (p > .001). As a consequence the decision was taken
to consider the data set to be a single group. Data will therefore be presented for each outcome
variable separately.
36

2. Missing Data
Any participant for whom more than 50% of the items were missing in any scale, or those who
had completed less than 50% of the total scale package were excluded. In practice this meant
excluding 9 from the community sample. Missing data ranged from 0% for ethnicity to 14.1% for
number of areas of concern. This, the missing data is only a small fractional part of the
database and missing values may be considered to be missing completely at random.
3. Internal Consistency
The values for Cronbach’s alpha for all outcome variables across the sample and subsets of the
sample according to gender and recruitment are all high, demonstrating good internal
consistency on all measures ranging from 0.778-0.935.
4. The Relationship between Variables
In the following section, the relationships between outcome variables and between outcome and
process variables in the model are presented.
Outcome variables are mutually correlated (Table 4.1) and all correlations based on the entire
sample are statistically significant correlations (p < 0.001, in all cases).
Table 4.1 Pearson’s correlation matrix for outcome measures
Anxiety Depression Aggression Positive Affect Negative Affect
DAS 24 .637 571 .382 -.398 .610
Anxiety .637 .437 -.394 .700
Depression .380 -.560 .554
Aggression -.267 459
Positive Affect -.408
Table 4.2 summarises the degree of correlation between quantitative process and outcome
variables for all strata of the population defined by gender. In all cases the correlations reported
are statistically significant correlations (p < .001), unless marked † to denote p > 0.05.
37

Table 4.2 Correlation of quantitative variables with outcome variables
DAS24 Anxiety Depression Aggression Positive Negative N
Affect Affect
Optimism Female -.537 -.588 -.578 -.497 .473 -.531 832
Male -.543 -.597 -.569 -.417 .471 -.504 331
FNE Female .535 .521 .338 .380 -.340 .541 838
Male .587 .581 .448 .309 -.351 .611 346
Social acceptance Female -.613 -.460 -.510 -.280 .359 -.461 859
Male -.543 -.452 -.512 -.232 .342 -.453 350
Satisfaction with Social
support
Female -.432 -.369 -.455 -.324 .342 -.389 853
Male -.472 -.407 -.484 -.212 .271 -.361 349
Salience Female .473 .386 .207 .264 -.142 .336 857
Male .444 .287 .227 .217 -.141 .275 333
Valence Female .661 .422 .461 .290 -.402 .408 861
Male .580 .416 .472 .205 -.350 .426 335
Social comparison Female .305 .331 .160 .286 .151 .347 859
Male .268 .255 .074† .184 .007† .236 350
Appearance discrepancy Female .584 .334 .391 .203 -.265 .338 856
Male .488 .336 .373 .122 -.241 .315 352
5. Demographic Factors
5.1 Gender
Table 5.1(a) summarises the age and gender frequencies for the whole study sample, with table
5.1(b) illustrating the means and standard deviations for the outcome variable by gender.
Table 5.1(a) – Age and gender frequency for whole sample a
Age Group
Male Female Total
N(%)
18-25 35 97 137(11)
26-35 42 169 216(18)
36-45 60 170 235(19)
46-55 61 158 226(18)
56-65 79 138 225(18)
> 65 71 125 199(16)
Total N(%) 354(28) 867(68.5) 1221
a 44 cases (3.5%). Missing data
Table 5.1(b) Mean values for outcome variables by gender
Variable Female Male N
DAS24 44.95(16.18) 35.87(14.56)
Anxiety 8.67(4.64) 6.97(4.37)
Depression 5.16(3.78) 4.97(3.75)
Aggression 25.07(9.42) 26.07(9.06)
Positive Affect 31.02(8.92) 33.10(8.55)
Negative Affect 20.70(8.82) 18.35(7.72)
38

A graphical display of the distribution of DAS24, HADS Anxiety, HADS Depression and
Aggression by gender is given in Figure 5.1.
Figure 5.1: DAS24, HADS Anxiety, HADS Depression and Aggression by gender
ANOVAs reveal that the scores for women are significantly higher (indicating more distress) on
the DAS24 (F(1, 1213) = 71.51, MSE = 247.64, p < .001, ), higher on anxiety (F(1,
1212) = 26.44, MSE = 20.79, p < .001, ) and negative affect (F(1, 1171) = 13.52,
MSE = 72.53, p = .165, ). Conversely, males scored higher than females on positive
affect (F(1, 1172) = 10.63, MSE = 77.80, p = .001, ). However, the effect sizes for all
significant differences are judged to be small, ranging from 0.011-0.056 (Table 5.1(a)).
39

Table 5.1(c) Frequency of number of areas reported as sensitive according to gender.
None
Marked
One Two Three Four Five 6 or more Total
Female N 95 201 153 134 90 73 121 867
% 11.0 23.2 17.6 15.5 10.4 8.4 14.0 100
Male N 77 113 58 33 24 11 38 354
% 21.8 31.9 16.4 9.3 6.8 3.1 10.7 100
In relation to the number of areas reported as sensitive, the application of the chi-square test of
association indicates that there are statistically significant differences in the profiles between
male and female ( = 51.21, df = 6, p < .001) with females reporting considerably more areas
of concern and with a statistically significant linear component ( = 33.99, df = 1, p < .001).
See Table 5.1(c) for frequencies.
Table 5.1(d) Mean values for outcome measures by visibility to others
Visible/non N DAS24 Anxiety Depression Aggression Positive Negative
visible
Affect Affect
Female Yes 404 46.67(15.45) 9.26(4.70) 5.55(3.82) 26.03(9.42) 30.52(8.82) 21.73(9.05)
No 460 43.44(16.67) 8.15(4.52) 4.81(3.73) 24.21(9.35) 31.46(8.99) 19.80(8.52)
Male Yes 165 38.32(15.03) 7.62(4.35) 5.43(3.93) 26.52(9.32) 31.92(9.06) 19.66(8.02)
No 188 33.72(13.82) 6.40(4.33) 4.56(3.54) 25.68(8.82) 34.16(7.93) 17.18(7.26)
* 48 = missing data
Two-way ANOVAs show that females report significantly poorer mean values than males on
DAS24, HADS Anxiety, Positive Affect and Negative Affect (p < .001, in all cases) and those
with a visible concern report significantly poorer mean values on DAS24, HADS Anxiety, HADS
Depression, Positive Affect and Negative Affect (p < .001, all cases) and on Aggression (p =
.024)
5.2 Age
Table 5.2(a) summarises the extent of the correlation between age and each outcome measure
according to gender. In all cases the correlations reported are statistically significant correlations
(p < .001).
Table 5.2(a) Correlation of outcome variables with age
DAS24 Anxiety Depression Aggression Positive Affect Negative Affect N
Female -.325 -.209 -.068 -.321 .121 -.272 865
Male -.393 -.210 -.124 -.277 .000 -.292 351
40

Figure 5.2 DAS 24 against age
Significant negative correlations were found between age and DAS24, anxiety, depression,
aggression and negative affect for the whole sample.
6. Visibility and Areas of Concern
6.1 Area of concern
Participants were asked to indicate all areas of the body about which they had concern (see
appendix 8). Some participants reported only one area and others recorded multiple areas of
concern. The frequency with which participants reported each area and percentages of
participants reporting each area are presented in Table 6.1(a). Sixty five percent had concerns
about an area normally visible to others (including forehead, ears, eyes, nose, mouth, hands or
cheeks). Some participants indicated more than one area of the body and accordingly the
frequency does not equal the overall sample size.
41

Table 6.1(a) Frequency and percentage reporting area of concern
Visible Area N % Non visible Area N %
Eyes 193 15.3 Abdomen 341 27.0
Nose 172 13.6 Thighs 281 22.2
Cheeks 138 10.9 Breasts 247 19.5
Mouth 133 10.5 Lower Legs 236 18.7
Hands 156 12.3 Upper Arms 213 16.8
Forehead 105 8.3 Buttocks 176 13.9
Ears 81 6.4 Feet 175 13.8
Neck 143 11.3
Knees 139 11.0
Hips 125 9.9
Scalp 115 9.1
Back 114 9.0
Forearms 112 8.9
Chest 110 8.7
Shoulder 72 5.7
Genitalia 60 4.7
6.2 Visibility of main area of concern
Using the one area participants indicated as being their main concern only, 590 of the
participants were classed for subsequent analyses as having an area of concern normally
visible to others and the remaining 671 classed as having concerns less often visible to others.
The means and standard deviations for scores on the outcome measures are presented for
those with ‘visible’ and ‘non visible’ areas of concern in Table 6.2(a).
Table 6.2(a) Means and standard deviations for visible and non visible areas on outcome measures
Visible N DAS24 Anxiety Depression Aggression Positive Negative
Affect Affect
Yes 590 44.24(15.66) 8.79(4.66) 5.48(3.83) 26.20(9.42) 30.91(8.91) 21.14(8.78)
No 671 40.63(16.51) 7.68(4.55) 4.76(3.68) 24.62(9.25) 32.17(8.75) 19.22(8.36)
Mean levels on DAS 24 are significantly higher on average amongst those with a visible
concern (F(1, 1209) = 20.598, p < .001), but the effect is small (partial eta squared = 0.017).
Mean HADS Anxiety is significantly higher amongst those with a visible concern than those
without (p < .001), as is mean depression (p < .001), mean aggression (p = .014), and mean
negative affect (p < .001). Mean positive affect is significantly lower amongst those with a
visible concern (p = 0.013). (Table 6.2(a)).
6.3 Numbers of area of concern
Table 6.3(a) reports the percentage of participants reporting one or multiple areas of concern.
Means and standard deviations by outcome variable are shown in table 6.3(b), and the means
and 95% confidence intervals for the DAS are illustrated in Figure 6.1.
42

Table 6.3(a) Frequency of number of areas reported as sensitive according to gender.
None marked One Two Three Four Five 6 or more Total
N 172 314 211 167 114 84 159 1221
% 14.1 25.7 17.3 13.7 9.3 6.9 13.0 100
Table 6.3(b) Mean and standard deviations for number of areas of concern by outcome variable
DAS Total
Total Anxiety
Score
Total Depression
Score Aggression Total Positive affect Negative affect
None 32.71 (14.44) 6.42 (4.58) 4.09 (3.60) 23.08 (8.84) 33.64 (8.58) 16.88 (7.10)
One 37.24 (13.94) 7.24 (4.60) 4.29 (3.38) 23.38 (8.65) 32.84 (8.00) 18.59 (7.96)
Two 39.71 (14.32) 7.80 (4.36) 4.89 (3.42) 25.32 (9.31) 31.53 (9.39) 19.66 (8.13)
Three 43.64 (14.19) 8.71 (4.24) 5.42 (3.83) 26.25 (9.22) 31.74 (8.53) 20.10 (8.49)
Four 47.62 (15.48) 8.84 (4.30) 5.21 (3.51) 26.93 (9.99) 31.34 (9.21) 20.12 (8.16)
Five 51.95 (14.77) 9.76 (4.06) 6.44 (4.24) 26.86 (9.57) 29.75 (9.55) 23.48 (8.95)
Six or more 56.21 (14.95) 10.82 (4.55) 7.01 (4.08) 28.99 (9.47) 27.95 (8.52) 25.43 (9.38)
Total 42.32 (16.21) 8.20 (4.63) 5.10 (3.77) 25.36 (9.36) 31.58 (8.85) 20.12 (8.61)
Figure 6.1 95% confidence interval for mean DAS according to number of sensitive areas reported.
In all cases, a one-way analysis of variance for trends shows that there is a statistically
significant trend with increasing levels of poor adjustment occurring on average with increasing
number of sensitive areas endorsed (Table 6.3(b)).
7. Dispositional Factors
Higher scores on the LOT-R indicate greater levels of optimism. There is an overall sample
mean of 13.69 and standard deviation of 3.37 (n=1250).
43

Table 7.1 summarises the degree of correlation between optimism and each outcome variable.
In all cases the correlations reported are statistically significant (p < .001).
Table 7.1 Correlation of optimism with outcome variables
DAS24 Anxiety Depression Aggression Positive Affect Negative Affect N
Optimism -.535 -.592 -.568 -.459 .475 -.529 1205
8. Socio-Cognitive Factors
Table 8.1 reports the means and standard deviations on all socio-cognitive measures
Table 8.1 Mean and standard deviations for all socio-cognitive factors
M(SD) N
FNE 36.63(10.59) 1199
Social acceptance 11.35(2.83) 1254
Satisfaction with Social support 19.75(4.61) 1251
Table 8.2 summarises the degree of correlation between the socio-cognitive factors and each
outcome variable. In all cases the correlations reported are statistically significant (p < .001).
Table 8.2 Correlation of socio-cognitive factors with outcome variables
DAS24 Anxiety Depression Aggression Positive Negative N
Affect Affect
FNE .576 .545 .351 .337 -.351 .563 1241
Social acceptance -.585 -.453 -.500 -.257 .353 -.461 1251
Satisfaction with Social
Support
-.442 -.386 -.460 -.291 .330 -.390 1251
9. Appearance-specific Cognitive Factors
Table 9.1 reports means and standard deviations on all appearance-related cognitive measures
Table 9.1 Mean and standard deviations for all appearance cognitions
M(SD) N
Salience 31.44(8.08) 1252
Valance 21.45(8.06) 1261
Social comparison 35.73(7.27) 1255
Appearance discrepancy 29.96(11.41) 1254
Table 9.2 summarises the degree of correlation between the appearance cognitions and the
outcome variables. In all cases, the correlation reported are statistically significant (p

Table 9.2 Correlation of the appearance cognitions and the outcome variables
DAS24 Anxiety Depression Aggression Positive Negative N
Affect Affect
Salience .495 .370 .197 .233 -.158 .331 1251
Valence .648 .428 .448 .245 -.394 .422 1258
Social comparison .322 .322 .130 .249 .122 .330 1253
Appearance discrepancy .580 .349 .372 .166 -.268 .351 1251
Subjective perceptions of disguisability and visibility when clothed have been treated as
categorical variables as they are single item measures. As expected the degree of disguisability
differs on average between those that have a visible concern and those that do not ( =
103.64, df = 6, p

Figure 7.1(a): Scores on the DAS 24 and responses to the question “How difficult is it to disguise the
aspect of your appearance you are concerned about?”
Mean levels of each outcome according to reported level of visibility when clothed are given in
Table 9.4. Analysis, using an analysis of variance for a one-way between subjects design
indicates that there are statistically significant differences on all outcome measures for reported
levels of visible concern (p < 0.01, in all cases).
Table 9.4 Mean outcome variables according to reported level of visibility when clothed
DAS24 Anxiety Depression Aggression Positive Negative N
Affect Affect
1 Not at all
visible
36.81(14.24) 7.52(4.71) 4.36(3.58) 24.84(9.25) 33.58(8.03) 18.56(8.01) 270
2 38.48(13.11) 7.22(3.95) 4.35(3.48) 24.02(9.13) 32.55(9.13) 18.93(7.26) 122
3 43.22(16.40) 8.28(4.60) 4.93(3.75) 24.41(8.60) 31.46(8.60) 19.45(8.49) 69
4
44.11(16.64) 8.71(4.30) 5.22(3.53) 25.28(9.39) 30.64(8.33) 19.64(8.14) 196
Moderately
5 48.61(14.83) 9.23(4.44) 6.01(3.74) 28.62(9.76) 30.10(9.26) 22.13(9.12) 97
6 45.90(16.41) 8.59(4.32) 5.82(3.66) 25.96(9.00) 29.69(8.40) 21.11(8.59) 109
Impossible 45.54(16.50) 8.62(4.94) 5.65(4.03) 25.67(9.51) 31.27(9.42) 21.57(9.31) 353
46

10. Regressions by Outcome Variable
Hierarchical stepwise multiple regression was used to assess the ability of the measured
demographic, visibility, dispositional, socio-cognitive and appearance-related socio-cognitive
factors to predict levels of social anxiety (DAS), psychological wellbeing (PANAS & HADS) and
aggression (RAQ). In the following each outcome variable is modeled using hierarchical linear
regression. The predictors in block 1 are the biographic and demographic variables of age,
gender, recruitment method and living arrangements. Objective visibility forms block 2. The
variable optimism forms block 3. The socio-cognitive factors fear of negative evaluation, social
acceptance and satisfaction with social support form block 4. The appearance cognitions of
salience, valence, social comparison, appearance discrepancy and subjective Visibility
(disguisability and visibility when clothed) form block 5. All variables are included in the
regression as the operational model has several outcomes. (See figure 8.1.1).
BLOCK
BLOCK
1
2
Demographics Objective
Visibility
Age
Gender
Family Status
Method of
recruitment
(clinic /
community)
Visible
v
Non
visible
BLOCK
3
Dispositional
Style
Optimism /
pessimism
BLOCK
4
Sociocognitive
factors
Satisfaction
with social
support
Fear of
negative
evaluation
Social
acceptance
BLOCK
5
Appearanc
e
cognitions
Social
comparison
Salience
Valence
Appearance
discrepancy
Subjective
(self report
disguisability
and visibility
when
clothed)
Figure 8.1 Further development of the model = hierarchical stepwise multiple regression
Outcomes
Social
acceptance
and
avoidance
Depression
Anxiety
Aggression
Positive
affect
Negative
affect
In the model, gender, method of recruitment, living arrangements (with “Living Alone” and
“Living with Friends” collapsed together and “Living with Partner” as another), objective visibility,
disguisability (coded 0 if easy to disguise and 1 if an expression of difficulty has been made)
and visibility when clothed (coded 0 if not visible or mild; and 1 if moderate through to extreme)
are entered as ‘dummy variables’ (a standard treatment of dichotomous variables in regression
approaches).
47

10.1 Appearance-related Social Anxiety and Avoidance
When entering the variables as described previously, 66.2% of the observed sample variation in
the DAS24 is accounted for by the regression model given in Table 9.1 and this effect is
statistically significant, = .662, F(16, 1038) = 127.191, MSE = 85.91, p < .001.
In the fitted model for DAS24 there are no significant effects attributable to living arrangements,
recruitment, or social comparison. There are relatively small but statistically significant gender
effects with females scoring 2.2 points higher on DAS 24 than males (p = .002).
In the regression model there are relatively strong and statistically significant negative
relationships between age (beta = -0.144, p < .001), optimism (beta = -0.199, p < .001), and
social acceptance (beta = -0.233, p < .001) with DAS24. Likewise there are relatively strong
and statistically significant positive relationships between FNE (beta = 0.131, p < .001), salience
(beta = 0.123, p < .001), valence (beta = 0.240, p < .001), appearance discrepancy (beta =
0.116, p < .001) and disguisability (beta = 0.123, p < .001).
There are smaller but statistically significant effects attributable to visibility of main area of
concern and for visibility when clothed; the direction of the effects is in the opposite direction to
that indicated by the bivariate analyses. After allowing for all the above mentioned effects, those
with a visible area of concern score lower on average on DAS24 than those without a visible
concern by 2.7 points (beta = -0.053, p = .007) and those reporting high levels of visibility when
clothed score lower than those with relatively lower levels of self-reported visibility (beta = -
0.085, p < .001).
48

Table 10.1 Regression Model for DAS24
Variable Coef Std Beta t p VIF Incremental
Error
R 2
P
Constant 43.25 3.471 12.46

HADS Anxiety, and the relative magnitude of beta identifies these four variables as being the
dominant effects.
There are relatively small but statistically significant effects in the HADS Anxiety model for
satisfaction with social support (beta = -0.061, p = .025), social comparison (beta = 0.063, p =
.021) and visibility when clothed (beta = -0.069, p = .011), with the effect in the direction contrary
to the direction indicated by the bivariate analyses.
Table 10.2 Regression Model for HADS Anxiety
Variable Coef Std Beta t p VIF Incremental
Error
R 2
P
Constant 10.900 1.255 8.69

In this model, the variables method of recruitment, living arrangements, visibility of main area of
concern, salience, appearance discrepancy, social comparison, disguisability and visibility when
clothed are not statistically significant predictors of HADS Depression. The variables optimism
(beta = -0.345, p < .001), social acceptance (beta = -0.245, p < .001) and satisfaction with social
support (beta = -0.183, p < .001) are all negatively associated with HADS Depression and
valence (beta = 0.104, p = .003) positively associated with HADS Depression.
To a lesser extent, there is a statistically significant positive relationship between age and HADS
Depression in the sample (beta = 0.060, p = .025) and FNE and HADS Depression (beta =
0.066, p = .038). There is a small gender effect (beta = -0.067, p = .006) with males scoring
0.57 points higher on average than females on HADS Depression after adjusting for all other
variables in the model.
Table 10.3 Regression Model for HADS Depression
Variable Coef Std Beta t p VIF Incremental P
Error
R2
Constant 14.773 1.044 14.15

10.4 Aggression
When entering the variables as described previously, 30.7% of the observed sample variation in
aggression scores is accounted for by the regression model given in Table 10.4 and this effect
is statistically significant, = .307, F(16, 1038) = 28.691, MSE = 61.794, p < .001.
Table 10.4 gives the fitted model for aggression. In this model, the variables method of
recruitment, living arrangements, visibility of main area of concern, FNE, social acceptance,
salience, valence, appearance discrepancy, disguisability and visibility when clothed are not
statistically significant predictors of aggression. The regression model captures strong and
statistically significant negative effects between aggression and optimism (beta = -0.358, p <
.001) and age (beta = -0.218, p < .001). There is an appreciable gender effect with males, on
average, scoring 3.3 points higher than females on the aggression scale and this effect is
statistically significant (beta = -0.158, p < .001).
To a lesser extent, there is a statistically significant negative relationship between satisfaction
with social support and aggression (beta = -0.073, p = .018) and between social comparison and
aggression (beta = 0.064, p = .038).
52

Table 10.4 Regression Model for Aggression
Variable Coef Std Beta t p VIF Incremental P
Error
R2
Constant 43.656 2.946 14.82

elatively small but statistically significant positive association between positive affect and
salience (beta = 0.080, p = .014) and between positive affect and social comparison (beta =
0.076, p = .015).
Table 10.5 Regression Model for Positive Affect
Variable Coef Std Beta t p VIF Incremental P
Error
R2
Constant 19.778 2.826 7.00

Table 10.6 gives the fitted model for negative affect. In this model, the effects for gender,
method of recruitment, living arrangements, visibility of main area of concern, salience, valence,
appearance discrepancy, disguisability and visibility when clothed are not statistically significant
effects. The regression model captures a strong and statistically significant positive association
between positive affect and FNE (beta = 0.297, p < .001) and strong and statistically significant
negative associations between negative affect and optimism (beta = -0.222, p < .001) and social
acceptance (beta = -0.138, p < .001). There are weaker, but statistically significant, negative
associations between negative affect and age (beta = -0.068, p = .013) and satisfaction with
social support (beta = -0.078, p = .005) and a positive association between negative affect and
social comparison (beta = 0.067, p =.016).
Table 10.6 Regression Model for Negative Affect
Variable Coef Std Beta t p VIF Incremental P
Error
R2
Constant 23.921 2.444 9.79

11. Clinic Specific Data
In order to explore the potential impact of the aetiology of the disfiguring condition on
adjustment, the data derived from out-patient clinics were examined. A summary of the outcome
variables by clinic is given in Table 11.1. Box and whisker plots show the extent of individual
variation within each out-patient clinic.
Table 11.1 Mean and standard deviations for each outcome variable by clinic
N DAS24
M(SD)
Anxiety
M(SD)
Depression
M(SD)
Aggression
M(SD)
Positive
Affect
M(SD)
Negative
Affect
M(SD)
Plastics 225 46.03(17.23) 8.88(4.65) 5.28(3.77) 26.59(8.88) 31.77(8.50) 21.26(8.84)
Dermatology 89 43.80(14.31) 8.55(4.29) 5.64(4.16) 26.59(10.61) 30.52(8.91) 20.08(9.10)
Laser 38 43.03(16.39) 8.39(4.82) 3.74(3.03) 24.63(9.48) 34.26(7.98) 20.76(8.36)
Cleft Lip and
Palate
11 42.64(14.03) 10.36(6.05) 3.64(2.34) 32.09(11.32) 31.73(6.77) 25.09(8.69)
Burns 18 42.22(17.66) 7.39(4.39) 5.39(4.73) 27.83(10.38) 31.06(8.79) 20.24(7.21)
Ophthalmology 39 39.23(13.33) 7.89(4.89) 4.98(3.24) 22.52(8.55) 32.40(9.67) 19.26(9.11)
Head and
Neck cancer
34 38.09(14.96) 7.24(4.95) 5.76(3.91) 23.97(9.55) 30.18(10.11) 18.64(9.45)
Prosthetics 54 36.28(17.00) 6.19(5.08) 4.74(4.01) 25.70(10.00) 34.56(9.94) 17.37(7.70)
Ocular
Prosthetics
30 35.00(12.53) 5.97(4.13) 3.37(3.51) 21.80(7.25) 34.69(8.81) 18.10(6.75)
Rheumatoid
Arthritis
36 34.31(12.65) 6.94(3.77) 4.81(3.63) 22.94(8.31) 30.00(8.88) 17.88(6.94)
ENT 17 33.06(17.08) 5.35(3.76) 5.88(3.52) 20.47(6.60) 31.56(8.88) 14.63(6.17)
Melanoma 36 32.33(16.15) 7.25(5.22) 4.08(3.41) 21.64(7.99) 30.00(9.55) 16.81(7.80)
Figure 9.1(a) Comparative box-and-whiskers plot for DAS 24 scores by condition
56

Figure 9.1(b) Comparative box-and-whiskers plot for HADS Anxiety scores by condition
Figure 9.1(c) Comparative box-and-whiskers plot for HADS depression scores by condition
Table 11.3 shows the percentages of participants scoring low, mild, or moderate to high on
HADS for anxiety and depression in the overall sample (n=1259).
57

Table 11.3: Percentage of participants with low (0-7), mild (8-10), and moderate/high (11- 21) levels of
anxiety and depression
Anxiety Score Depression Score
Category N 0-7 8-10 11-21 0-7 8-10 11-21
All Participants 1259 48.2 22.2 29.5 76.4 13.4 10.2
Table 11.4 shows the percentages of participants scoring low, mild, or moderate to high on
HADS for anxiety and depression split by clinic (n=1259)
Table 11.4 Percentage of participants with low (0-7), mild (8-10), and moderate/high (11- 21) levels of
anxiety and depression by clinic category.
Anxiety Score Depression Score
Clinic Category N 0-7 8-10 11-21 0-7 8-10 11-21
Plastics 226 42.0 25.7 32.3 75.2 13.7 11.1
Dermatology 88 50.0 18.2 31.8 71.6 11.4 17.0
Laser 38 36.8 31.6 31.6 92.1 2.6 5.3
Cleft lip and palate 11 36.4 0.0 63.6 90.9 9.1 0.0
Burns 18 50.0 33.3 16.7 72.2 11.1 16.7
Ophthalmology 61 54.1 16.4 29.5 90.9 9.1 0.0
Head and Neck Cancer 34 50.0 26.5 23.5 67.6 14.7 17.6
Prosthetics 54 64.8 16.7 18.5 79.6 9.3 11.1
Ocular Prosthetics 30 80.0 6.7 13.3 86.7 10.0 3.3
Rheumatoid Arthritis 36 63.9 22.2 13.9 75.0 13.9 11.1
ENT 17 82.4 5.9 11.8 70.6 23.5 5.9
Melanoma 36 63.9 8.3 27.8 83.3 11.1 5.6
58

DISCUSSION
This report contains the first wave of analysis of the data from the research programme. Due to
the size of the data set (in excess of 300,000 data points) for Study 1, and the number of followon
studies, the analysis is necessarily a ‘work in progress’. The next phase of analysis will
continue over the next six months, and will be included in later publications. In the discussion
which follows, the commentary is organised in relation to the model of adjustment presented in
Figure 10 below. This model illustrates the further developments made to the frameworks
presented in the introduction (Figures 1 & 3) in the light of the results and analyses outlined in
the previous section.
Demographics Visibility Dispositional
Style
Age
Gender
Family status
Group (clinic/
community)
Visible
v
Non Visible
Optimism /
Pessimism
Figure 10: Further Development of Model of Adjustment
Sociocognitive
factors
Satisfaction
with social
support
Fear of
Negative
Evaluation
Social
Acceptance
Appearance
cognitions
Social
comparison
Salience
Valence
Appearance
discrepancy
Subjective
visibility (self
report
disguise,
noticeability)
Outcomes
Social Anxiety
& Avoidance
Depression
Anxiety
Aggression
Mood
One of the most notable achievements of this first study in the research programme has been to
achieve and exceed our target recruitment figure of 1000, delivering a substantial body of data
relating to adjustment to appearance concerns from a sample of 1265 participants. To our
knowledge, this is the largest scale study in the field to date. A particularly noteworthy addition
to previous understanding is the data derived from the community sample. Levels of distress in
this population are considerable, and comparable to participants recruited from hospital settings.
The homogeneity of the two data sets resulted in the majority of these initial analyses being
performed on the complete data set, in contrast to our assumption before embarking on this
research, that we would be comparing and contrasting the data from the community and
hospital based samples on a routine basis. Clearly previous research, which has focused on the
problems and difficulties of those actively seeking treatment has revealed only the tip of the
iceberg of appearance-related distress amongst those with disfiguring conditions.
Mean levels of depression were low in the sample, echoing previous research (Moss, Harris &
Carr, 2004; Newell, 2000b; Rumsey & Harcourt, 2005; Rumsey et al, 2004). The mean level for
59

anxiety was in the low to mild range, the level for positive affect was quite high, and negative
affect quite low compared with normative values. The mean level for aggression fell in the low to
moderate range. However, the variance in the sample was high, and substantial numbers of
participants showed significant levels of distress.
The data from clinic attendees was examined for any notable patterns of adjustment or distress.
There are many difficulties inherent in classifying the various conditions which result in
disfigurement (for example, patients attending a dermatology or plastics clinic will have
disfigurements resulting from a large number of different aetiologies). Accordingly our analysis
was limited to differences in the type of clinic attended. The overall impression resulting from
this analysis was the similarity in profiles from the various clinics – once again adding to the
impression that individual psychological factors and processes were a bigger determinant of
adjustment. Taken on its own however, the lack of differences between clinics in this data set
should be treated with caution. Despite minimum recruitment targets for every clinic, the
challenges of recruitment and the resulting sample sizes varied considerably. The profile for
participants with a cleft of the lip and/or palate is one of greater distress for negative affect,
aggression and anxiety than for participants from other clinics. However, the sample is also the
smallest (n=11), reflecting the low preponderance of patients of 18 years and over attending this
particular out-patient clinic. In addition, adjustment profiles may vary as a result of the age
profiles of attendees (for example, the preponderance of older adults attending melanoma and
Rheumatoid Arthritis clinics).
Demographic variables
The mean age of participants was 47 years, with a range of 18-91 years. The respondents in
this study represent a sample with an older profile than in the majority of previous research,
offering a useful insight into the appearance concerns in middle and older adulthood. There
were negative correlations between increasing age and scores for social anxiety and social
avoidance, aggression, negative affect, depression and anxiety. So, bearing in mind the
limitations of a cross-sectional sample, the picture in this study is one of positive adjustment
increasing with age. However the relationships are not dramatic and many older participants
were concerned and distressed about their appearance. These results are consistent with
previous research, and should not be taken as indicating that appearance concerns are the
preserve only of the young.
The importance of appearance in late adolescence and early adulthood has been highlighted by
many (Harris & Carr 2001; Liossi 2003; Lovegrove & Rumsey, 2005), and Cash et al’s (1986)
survey of 15-74 years found that body image concerns diminished with age. However, Rosser
(2008) has also pointed out that the role of age in appearance adjustment is not straightforward,
and Lansdown, Lloyd and Hunter (1991) pointed to the crucial role of appearance concerns
throughout the lifespan. Rumsey and Harcourt (2005) reported data from older people (over 60
years) with skin conditions which indicated that although fewer people in this age group
expressed significant concerns, a sizable proportion were distressed about aspects of their
appearance. Rather than a reduction in levels of concern compared with younger people, the
60

focus and nature of the appearance concerns appeared to be different. The stereotypes of
appearance considered desirable earlier in life were less important, but aspects of self-
presentation, such as appearing smart and fit, remained important.
Several commentators have noted the bias in previous research towards female participants
and have highlighted the need to explore the concerns of men in more detail (Rumsey &
Harcourt, 2005). Although 68.5% of the participants in this study were female, we still managed
to recruit a sizeable sample of men (n=354). A higher proportion of men were recruited from
outpatient clinics than from community settings. It may be that women are more helpful, more
interested in sharing their experiences, or perhaps that the GP practices used as a basis for
large segments of the community recruitment had more women attending surgeries, and/or who
have attended in the past (leading to their inclusion in the READ code classifications used as
the basis for mailshots).
Whilst noting the lack of research with males, previous studies (including people with and
without visible disfigurement) have in the main suggested that women are more prone to having
significant levels of appearance concerns and body dissatisfaction than men (e.g. Cash et al,
2004; Harris & Carr, 2001). This has been attributed to the impact of societal norms which infer
that the importance of appearance is more specific to women than to men (Rosser 2008), and
greater familial concern with the appearance of daughters than sons (Schwartz et al, 1999).
However, in relation to body image concerns in the general population, Cash & Pruzinsky
(2002) have commented that both genders experience distress and White (2008) reported that
teenage boys are more distressed about their appearance than girls. In the current study, levels
of social anxiety and social avoidance, anxiety and negative affect were higher for women, but
perhaps the most notable finding is that the effect sizes were small. Women were also more
likely to have multiple areas of concern than men. There were no significant differences in
relation to depression, however men had a higher mean score on aggression. Levels of positive
affect were higher for women. Newell (2000a) concluded that research findings examining the
role of gender in adjustment to visible differences are contradictory, and also found varying
results in two different samples. Women in a sample showing less distress reported greater
difficulty than men (Newell, 2000b), but there were no differences between men and women in a
more distressed sample (Newell, 1998), suggesting that differences according to gender may be
confined to less distressed individuals. Our findings endorse the suggestion that both males and
females should be included in further research on appearance-related adjustment and distress,
and in efforts to meet the needs of those adversely affected.
Eighty one percent of the sample classified themselves as white, with similar profiles from both
the clinic and community recruitment settings. Although the sample includes participants from a
greater mix of ethnic backgrounds than much of the research hitherto, numbers are
proportionately low, and the collaboration felt it appropriate to study the effects of cultural
background in more detail in two of the follow-on studies (Studies 5 & 6).
61

Visibility and areas of concern
The findings relating to the visibility or otherwise of a disfigurement to others are mixed.
Approximately 65% indicated that their main concern related to the appearance of their face or
head, and 12.3% indicated their hands, mirroring earlier research about the greater impact of
visible disfigurements, compared with those which are more easily camouflaged or covered up
(see for example, Kent & Keohane, 2001). In addition, increasing levels of distress were
associated with perceptions of increasing difficulty in being able to disguise the aspect of
appearance in question. However, in the regression analyses, a lack of visibility to others in
everyday situations was associated with greater distress (higher levels of depression, anxiety,
aggression and negative affect, lower positive affect and higher levels of fear of negative
evaluation by others). It should be noted, however, that the effect sizes were small, and other
appearance-related cognitions had a much greater impact on adjustment. This mixed picture of
the effects of the visibility or otherwise to others may have resulted from shortcomings in our
measures. However, Moss (2005) and Rosser (2008) have also highlighted the complex nature
of the relationship between visibility and adjustment. Rosser (2008) noted the likelihood of an
effect of ease of concealment and also that the personal salience and valence attached to a
particular body part may further complicate matters. Major & Granzow (1999) and Smart &
Wegner (1999), raised the possibility of the ‘Preoccupational Model of Secrecy’ which discusses
the possible negative impact of concealment associated with the threat of the stigma being
discovered and/or fear of revealing the stigma. Those with a difference which is routinely visible
to others may be forced to develop strategies to deal with the reactions of others (for example,
using camouflage, or developing ‘stock’ answers to common questions), and may perceive this
to be effective. Avoidance of the need to develop these strategies may increase fears of
negative evaluation by others and may feed insecurity in more intimate situations when the
disfigurement will become visible. This interpretation is also supported by recent data derived
from patients seeking plastic surgery (Clarke, Hansen, White and Butler, in preparation). Further
research is warranted in this area.
Previous research has consistently shown a lack of linear relationship between severity and
concern/distress. In the light of these findings, and as the focus of this research related to
subjective psychological factors and processes, there was no objective assessment of the
severity of the participants’ disfigurement in this study. Various explanations for the lack of
relationship between severity and adjustment/distress have been put forward. Lansdown et al
(1997) suggested that those with ‘minor’ differences have to face a variability in responses that
inhibits the ability to predict with any certainty, and this can act as a deterrent to developing self
efficacy in responding effectively. For those with more severe (and visible to others)
disfigurements, there is a more consistent reaction (and most react), thus prediction is relatively
easy. Moss (2004) illustrated the complexities of the severity and the disguisability of
disfigurement and adjustment in reporting a U shaped parabola in a sample of 400 people with
a variety of disfigurements for visible disfigurements, with no such relationship for those able to
routinely conceal their difference. Moss refined Lansdown’s explanation in speculating that both
minor and severe disfigurements produce consistent and more easily predictable responses
from others, with those in the mid range provoking more variety.
62

Several studies, however, have highlighted the importance of subjective assessments of
severity. Moss (2004) and Rumsey et al (2004) found a linear relationship between subjectively
assessed severity of appearance and adjustment, highlighting the importance of personal
evaluation of a problem. Our results showed a striking relationship between increasing
numbers of areas of concern and growing levels of distress, particularly in relation to social
anxiety and social avoidance around appearance (DAS24). Participants in the community were
more likely to report multiple areas of concern than those recruited in hospital settings, and
women had greater numbers of areas of concern than men.
Only 25.7% of the sample reported being concerned about only one area. It is important to note
that people with a disfiguring condition affecting one body part may also have significant
appearance concerns about other aspects of appearance. Twenty seven percent reported
concern about their abdomens, 22% in relation to the appearance of their thighs & 14% re
buttocks. These results may reflect concerns about weight, and it is possible that these worries
may over-ride issues about a disfiguring condition. Weight related concerns were greater in the
community sample. The prevalence of weight concerns in the general population comes as no
surprise in the current context of rising levels of obesity. However, more research is needed to
unpick the similarities and differences in the different types of concern.
The multivariate nature of adjustment
The measures chosen as the outcomes in our conceptual framework were significantly
correlated, supporting the view that adjustment is multi-factorial (see for example, Rumsey et al,
2004; Rumsey and Harcourt, 2005). The psychological characteristics of those who were
positively adjusted included higher levels of optimism, greater feelings of social acceptance and
satisfaction with social support, a lack of concern about negative evaluations by others, and a
self-system with lower levels of salience and valence afforded to appearance-related
information. Levels of social anxiety and social avoidance were low, as were levels of negative
affect, general anxiety and depression. These people felt their disfigurement was reasonably
easy to disguise, and tended to be older than people with higher levels of distress.
An identical regression model was used to interrogate the data for each outcome variable. In
relation to social anxiety and social avoidance, an impressive 66.2% of the variance was
explained by the model. This was anticipated, as the measure in question (the DAS24) is
designed specifically to assess levels of distress in people with disfigurements. In this
regression model, there were no effects of living status, method of recruitment, or of
appearance-related social comparisons. There was a small gender effect, with women more
distressed than men, and strong negative effects of age (older people were less distressed),
optimism and social acceptance. As levels of fear of negative evaluation, salience and valence
increased, so did distress.
Similar pictures emerged when applying the regression model to the other outcome measures.
The model predicted approximately 30% of the variance for positive affect, 45% for negative
63

affect and 46% for both anxiety and depression. Rather than comment on the results of each
regression in detail (which would be an enormous task), in the discussion which follows, we
have chosen to focus most closely on the regression for social anxiety and social avoidance, as
the DAS24 is the outcome measure most specifically relevant to disfigurement, and as other
research has identified predictors of the more general measures of anxiety and depression.
The factors involved in the regression model are clustered to coincide with the diagrammatic
representation in Figure 1.
Dispositional style
In this study, dispositional style, specifically optimism/pessimism, had a strong effect on many of
the outcome variables, including depression, anxiety, aggression, negative effect and to a lesser
extent appearance-related social anxiety & avoidance, and increased the goodness of fit of
several of the regression models to an appreciable extent. In the health psychology literature,
there has been a consensus for some time that optimism is adaptive in the face of adversity.
Research specifically examining optimism in the context of appearance has been lacking, and
this study would suggest that this may be a key factor in adjustment. This is particularly
relevant in the context of intervention, as some researchers believe optimism can be taught –
Seligman (1998) for example, developed programmes to help adults and children change from a
pessimistic to an optimistic view of life.
Socio-cognitive processes
Levels of fear of negative evaluation from others, social acceptance and satisfaction with social
support correlated significantly with all the outcome measures in this study. These results are
consistent with the previous literature in this area. Confidence in social situations has been
highlighted as key to adjustment by many commentators in this field (see for example, Partridge
1990). Fear of negative evaluations by others and avoidance of social situations have been
thought to play a central role in social difficulties relating to threats to body image, regardless of
the actual behaviour of others (Newell 2000).
The benefits of social support as a positive resource in a variety of situations are widely
accepted, and good quality social support is commonly regarded as an asset which can be
mobilised to act as a buffer to stress in people with disfigurements (Blakeney et al, 1990).
Liossi (2003) found that people with appearance concerns who reported higher levels of social
support had lower levels of social anxiety and social avoidance (also measured by the DAS24).
Her data suggested that social support may protect people from distress even when they have
dysfunctional appearance schemata. She proposed that good social support may promote
effective coping strategies, for example by facilitating exposure to feared situations (see also
Baker 1992). Personal accounts testify to the benefits of feeling at ease with familiar others,
who are perceived as seeing beyond superficial appearances to the ‘real person beneath’
(Rumsey & Harcourt, 2005).
The role of appearance-related cognitions
In addition to confirming the role of these socio-cognitive processes in adjustment, this study
has highlighted the considerable contribution of cognitive processes relating more specifically to
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appearance-related issues. The salience of appearance concerns, the value attached to
appearance, appearance-related self-ideal discrepancies and appearance-related social
comparison processes correlated significantly with all outcome measures. Their effects were
particularly apparent in relation to scores relating to social anxiety and social avoidance
(DAS24) but their role also impacted on levels of anxiety, depression, aggression, positive and
negative affect.
The results indicate that appearance concerns are complex and can be debilitating. However,
an important positive aspect is that they involve factors which are amenable to intervention,
offering a strong endorsement of the potential of cognitive behavioural approaches to address
the needs of those affected. The results of this study support the tentative conclusion drawn
from previous research that the appearance concerns of people both with and without
disfigurements contribute to a range of processes including beliefs about the impressions
formed by others on the basis of appearance, and perceptions of the self (Thompson & Kent,
2001; Moss & Carr, 2004; Rumsey & Harcourt, 2005). The current results further indicate that
the way people process appearance-related information contributes to their level of adjustment.
These mechanisms are not new in the psychological literature, but until now have not been
demonstrated so clearly in people with disfiguring conditions. Associations between processing
styles and psychological distress including anxiety (Bar-Haim et al, 2007) and depression (Mogg
& Bradley, 2005; Strunk & Adler 2009) have been demonstrated in general population samples,
and there has been some evidence of appearance-related cognitive biases resulting in
increased recall of appearance-related information (Altabe & Thompson, 1996) in people with
high levels of body image concern. An increased likelihood of interpreting ambiguous situations
as appearance-related and negative has been shown in people who are obese (Jansen et al,
2007) and in those with eating disorders (Cooper 1997) compared to those without. Rosser,
Moss & Rumsey (in submission) found in a sample of people without disfigurements that
appearance concerns appear to include a propensity to interpret ambiguous stimuli as
appearance-related and negative (without any priming), and that those with high levels of
concern have a tendency to attend preferentially to stimuli they believe to be appearancerelated
when given a choice.
Taken with the results of the current study, a picture is emerging of people (with or without
disfigurements) in whom higher levels of appearance concern result in attentional biases.
These are people who perceive the world in a way that reinforces and exacerbates their
distress. Their processing biases (for example, preferential attention to and interpretation of
ambiguous information as negative) may lead to a perception of the world that is dominated by
the appearance issue(s) of concern, perhaps resulting in hyper-vigilance towards threatening
stimuli and self-reinforcing perceptions regardless of the actual environment (Matthews, 1990;
Rosser, 2008).
Social comparison processes help us contextualise and understand ourselves in relation to
others. Rosser (2008), for example, highlighted that people placing a higher value on
appearance in their self definition are more vulnerable to making negative (upward)
comparisons with others. The more frequently people engage in social comparisons the more
65

likely they are to have difficulties relating to body image, eating behaviours and self esteem
(Thompson, Heinberg & Tantleff, 1991). This is likely to be the result of the tendency to use
unrealistic standards of comparison (e.g. from the media) resulting in unhelpful upward
comparisons associated with more negative affect (Patrick et al 2004). Despite the enthusiasm
of several researchers for the potential of social comparison processes to extrapolate from the
body image literature and expect a significant contribution from these processes to adjustment
in the context of disfigurement, these effects are not evident in the quantitative data of this
study. This may be an artefact of the measure used. In the light of other socio-cognitive
processes being specific to appearance-related information (see below), it may be that the
chosen scale was too general in its orientation. Halliwell (2004) has highlighted the complexity
of social comparison processes, and the challenges of capturing these in standardised scales.
In addition, as there is evidence of social comparison processes at work in the qualitative data
derived from the follow-on studies (reported in subsequent sections), we feel this variable
should remain under consideration in future research.
The cognitive processes of valence (the value attributed to appearance) and the salience of
appearance issues in processing information, and the perception of the discrepancy between
the self and social norms were also shown to play significant parts in the regression models.
The concept of valence relates to the positive or negative emotional charge associated with
aspects of the self system. The valence of a self attribute such as appearance mediates our
feelings about ourselves in relation to that attribute. The emotional content of self attributes also
has implications for one’s global self esteem as it plays a part in the way self relevant
information is evaluated, and effects the positioning of an attribute within a self system. The
analysis showed that valence contributed to a significant extent to levels of positive affect,
depression and appearance-related distress.
Increased salience in cognitive processing is associated with increased accessibility of
information and processing strategies (Markus & Nurius, 1986). As the result of increased
accessibility, more salient information is not only considered more important to the individual,
but is also more likely to be frequently employed in the perception and experience of the world.
Highly salient self information and processing strategies may become chronically accessible.
As salient information is more frequently accessed, it becomes yet further defined and
reinforced, more established and has a greater resistance to modification. New information is
more likely to be manipulated to fit prior knowledge rather than a process of modifying previous
knowledge to incorporate the new. In the analyses of data from this study, the salience of
appearance-related information was shown to contribute to levels of social anxiety and social
avoidance and general anxiety.
Rosser (2008) and others have explained how the self concept can be conceptualised as being
organised hierarchically into mental representations or self schemata which direct the
processing of self relevant information. Poorer adjustment is likely when appearance is a more
central aspect of the self concept, and when this is dominated by appearance-related (rather
than non-appearance-related) issues. He has offered a useful overview of how appearancerelated
schemata may influence levels of adjustment and distress in people without
66

disfigurements which may be helpful in interpreting the results of this study. Rosser cites
Baldwin’s (1992) description of how the self-system is important in constructing templates
(schemata) which influence our interactions with other people. If new information fits within a
schema’s parameters, then specific assumptions, expectations and predictions will be
implemented by the schema to make sense of information and of how best to process it. For
more established schemata, the information they contain is more central, accessible and
frequently involved in cognitive processing and interpretation than non-schematic information.
In this way schemata aid processing, and also bias it towards what is expected. Once activated
the schema allocates how attention is distributed and how information is processed. The
potential for bias is considerable as the result of preferential attention to schematic information.
Established schemata are more heavily defined and less susceptible to integrating novel
information. They affect how we attend to, store, retrieve and ultimately perceive our
environment. Problems arise when biases cause dysfunctional preferential attention and
misevaluation of information, and as emotional element also associated, this can have
significant emotional implications (Greenberg & Safran, 1987). Self schemata are theorised by
their proponents as central, most salient, highly elaborated and strongly defined within the self
system, and are referred to as ‘affect laden’ due to their emotional as well as informational
content (Altabe & Thompson, 1996). Should a schema with a prevalent negative content gain
dominance in the processing system, information processing on all levels could be influenced
and manipulated to reinforce negative expectations. Building on the work of Moss and Carr
(2004), Rosser (2008) has described that for people with significant appearance-related
concerns, a maladjusted self schema would become highly central with negative generic
appearance information and processing biases chronically accessible – leading to a self
reinforcing cycle where appearance information is more frequently acknowledged, processed
and employed in processing and interpreting the world (see Figure 11).
67

Information Attention Encoding/Storage Retrieval
Processing
Unconscious
Unconscious
Unconscious preferential
Schematic preferential
Influence guiding of
attention
association with
schematic
networked
information
selection of more accessible
information
Schematic
Outcome
Maladaptive
Appearance
Self-Schema
Schematic
information
preferentially
attended
Appearance
related information
chronically
selected for
attention
Figure 11: Model of Processing Influence of Appearance Self-Schema (Rosser, 2008)
Limitations of this study
Information
associated with
schema associated
with stronger
information networks
– stronger encoding
New appearance
related-information
associated with
strong established
negative stored
information about
appearance
Schematic information more
accessible and more readily
available for interpretation of
other stimuli
New information interpreted
utilising chronically
accessible negative
appearance self-related
information, resulting in
reinforcement of negative
valence of schema and selfinterpretation
There are a number of limitations to this study which should be considered when interpreting the
results. Prior to the commencement of the study, the assumption was that those actively
seeking treatment for their condition would have greater levels of appearance-related distress,
and perhaps that previous research which has focused on populations such as these, was
inherently biased in this respect. Accordingly, considerable efforts were made to recruit from
community sources. In the event, differences between the adjustment profiles for the two
groups were minimal. The extent to which clinic and community samples are truly different
populations has been a source of debate amongst the collaboration during the research
process. Although the large majority of the community sample (those recruited through general
practices) were not accessing treatment at the time of the study, many will have experienced
treatment in the past. Nevertheless, an important message from these results is that substantial
numbers of people who are not seeking treatment will be experiencing appearance-related
distress, which could be amenable to intervention.
Although all participants believed themselves to have a disfigurement of some sort, this was
impossible to verify in relation to the community sample (a substantial proportion of whom were
not seen face to face by a member of the research team). However, the research team
attempted to address this matter by using READ codes as a basis for recruitment in all
participating practices which used them. This enabled targeted recruitment to those classified
by their GP as having a condition which was potentially disfiguring.
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The response rates to approaches to participate in the study varied from clinic to clinic, method
of approach (e.g in person, by poster, by post or online), and within this, from week to week. A
meaningful overall figure is impossible to calculate, thus we are not able to assess the
representativeness of our sample through conventional means. All the researchers involved in
the recruitment process were aware of the need to sample broadly, and all made considerable
efforts to ensure this was achieved. Nevertheless, as acknowledged above, there is an underrepresentation
of participants from ethnic minority groups in the current study, and more women
agreed to take part than men.
It could be also be argued that the lack of an objective rating of disfigurement is a limitation of
the study, as is the broad (type of clinic attended), rather than a very specific classification of the
condition of each participant. In addition to the lack of a relationship between severity and
distress in the previous literature (outlined above), an accurate ‘objective’ rating for every
participant would have been logistically very difficult to achieve. Considerable uncertainty exists
in the literature in relation to how to classify the severity of various forms of disfigurement, and
individual differences in raters have been shown to be considerable (Roberts-Harry 1997). Our
results offer support to the value of assessing subjective assessments of severity, as these are
likely to be more revealing as indicators of adjustment for clinicians, therapists and researchers.
Appealing as the explanations of cognitive processes offered above are in attempting to
interpret a large and complex data set, it should be noted that cognitive architecture can only be
inferred as it cannot be directly observed. Concepts such as ‘schemata’ are to some extent
notional, and the various processes and biases in attentional processes such as salience,
valence, self discrepancy and social comparison are inevitably somewhat contrived. In reality
they are interconnected, mutually dependent and overlapping. With these limitations in mind,
however, the results of the study have led us to revisit and recast the conceptual framework of
adjustment presented in the introductory section above. In this revised model, the important
role of appearance-specific cognitions is acknowledged and highlighted. Although the model is
presented in a linear format, the dynamic nature of the self system is also very evident in this
and subsequent studies.
Variables other than the ones measured in this study are also certain to play some part in
adjustment. Three main factors are usually presented as promoting resilience or vulnerability in
the psychological literature (Luthar et al 2002). These comprise the characteristics of the
individual (cognitive functioning, personality variables, self efficacy and self perception),
characteristics of the individual’s family, and the individual’s social context. Resilience is a
product of a mutual influence between these three factors, which may function as potential
mediators or moderators of the relationship between stressors, risk and outcomes. The
collaboration chose to focus on those factors which are most amenable to intervention, and thus
variables relating to family functioning and the influence of social context are not prominent in
this work. In addition, in order to keep the burden of assessment at an acceptable level, and to
include measures which could offer a profile of positive as well as negative adjustment, difficult
decisions were made and additional individual factors which have featured in previous research,
69

such as shame, were omitted. Where these factors are apparent in the later follow-on studies,
this is highlighted in later discussion.
Despite these omissions, the percentages of the variance explained by those variables which
were included in the study are impressive, especially when viewed in relation to other
comparable research. Connor and Sparks (2005) for example report that on average 40-50% of
variance in intention and 21-36% of variance in behaviour in studies is accounted for by Social
Cognition Models (e.g. Protection Motivation Theory, Health Belief Model, Theory of Reasoned
Action / Theory of Planned Behaviour).
Implications of the results
Advances in knowledge about the process and the consequences of cognitive mechanisms are
of relevance to understanding the development and maintenance of appearance concerns in
people with disfiguring conditions, and are particularly useful in informing the development of
interventions designed to meet the needs of those adversely affected. The results of this study
also emphasise the importance of understanding the subjective worlds of people with
appearance concerns and the place of their subjective perceptions in their cognitive
architecture. Taken with findings from previous research discussed above, it is clear that these
are likely to be better indicators of the need for intervention than the aetiology and physical
characteristics of the disfigurement.
As Rosser has recently noted (2008) in relation to the appearance concerns of people without
disfigurements, more work is needed to examine in detail the influence and role of self referent
appearance-related information within the self system, and the influence of appearance-related
information processing at all stages from attention to retrieval. However, the results of this study
leave no doubt that appearance-specific cognitions play a significant role in adjustment and
distress in people with disfiguring conditions.
The implications of the results for the development of effective methods of meeting the needs of
those affected are considerable. The findings suggest that interventions designed to tackle
unhelpful cognitions and beliefs about appearance will have an impact on how people adjust to
their difference. Padesky (1994) for example, has outlined a number of cognitive behavioural
methods to tackle maladaptive schemata which are likely to be relevant for people with
concerns resulting from disfigurement. Her examples include self-schemas (“I am ugly”), otherschemas
(“people prefer others who are attractive”) and world-related schemas (“the world
values appearance above most attributes”). Interventions challenge the maladaptive selfschema
and eventually provide an alternative more adaptive replacement. Alternatively, the
importance of the self-schema can be diminished and made less accessible with the
development of more effective ones encouraged (Hargreaves & Tiggemann, 2002). Veale and
Clarke (2009) have recently published a self-help manual based on cognitive-behavioural
principles for people with body image difficulties.
These approaches are explored further in the Interventions manual later in this report.
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STUDY 2
QUALITATIVE ANALYSIS OF FREE TEXT RESPONSES TO
THE QUESTION “DO YOU HAVE ANY GENERAL COMMENTS
ABOUT THE WAY IN WHICH YOUR APPEARANCE AFFECTS
YOUR LIFE, WHETHER POSITIVE OR NEGATIVELY?”
Study lead: Antje Lindenmeyer with additional input from James Kennedy
71

RATIONALE
In an attempt to offer participants in Study 1 the opportunity to expand on their individual
experiences, and in order to supplement responses to standardised measures with qualitative
data, an open ended response question was included in participant packs.
Thematic analysis was employed to analyse these open ended responses included in the
baseline questionnaires. The major themes are outlined below and are elaborated in the
section which follows.
I. Falling Short of the Ideal
• Oversized (weight issues, large nose, chin, feet)
• Undersized (height, too small breasts, short legs)
• Misshapen (body parts ‘misshapen’ or ‘odd’, or marked by scars, birth marks)
• Feeling abnormal (skin conditions, very visible, disfiguring conditions)
• Tone (dissatisfaction with body that is not taut, e.g. ‘saggy’ ‘droopy’)
• Proportions (body out of proportion, e.g. upper/ lower body, breasts)
• Smoothness (skin that is rough or ‘lumpy’, skin conditions, cellulite)
• Outline (features that mar outline through bulge, ‘sticking out’)
• Gender issues (feeling not manly or not womanly e.g. body hair)
• Criticism of the ideal (pressure of matching up to ‘ideals’)
II. Personal Meanings of Appearance
1.) Self and Appearance
Disrupted selves
• Hate and shame (strong negative emotions towards the body)
• Troubled (unsure where strong emotions come from)
• Different selves (feeling ones ‘real self’ is hidden)
• Mourning for former selves
• Complex responses
Disrupted biographies (feeling that true purpose in life was thwarted)
• Work (feeling that appearance prevented working at true level)
• Relationships (less attractive; unlikely to find partner)
• Pessimism (appearance prevents from reaching life goals overall)
• Positive outcome (past difficulties resolved)
Confidence
Ageing and feeling old
• Aged by appearance
• Feeling one’s age
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2.) Other People’s Responses
Direct responses
• Comments and staring
• Bullying
Responses from partners, family and friends
• Positive responses
• Dissonance (between respondent’s and family’s view)
• Hurtful responses
Misjudgements
• ‘People judge’
• Unhealthy (looking ill or contagious)
• Misunderstood (seen as something they were not)
Internalised responses (concerned about possible responses from others)
• Visibility (general concerns about visible conditions)
• Self-conscious
• Anticipated response (worry or acting in anticipation of responses)
3.) Coping with Appearance
• Not important
• Pragmatism (one has to accept; no use feeling sorry for oneself)
• Acceptance (positive acceptance, ‘this is who I am’
• Hiding (strategies to hide features, seen positively)
• Not coping (feeling negative; avoiding social situations)
4.) Practical Issues
• Clothes/ Shoes/ Makeup
• Pain and disability
• Time spent on appearance
5.) Time Structures
• Duration of Condition
• Changes (fluctuating conditions, changes in life overall)
• Milestones (significant time spans (e.g. schooldays) and events)
The responses from the majority of respondents fell into several subcategories. They also
mention more than one body part, emphasising that appearance-related dissatisfaction should
not be assumed to relate to one feature or body part in isolation. Comments about weight issues
were included in the analysis, insofar as participants either had at least one other appearance
issue or attributed their weight to a medical condition (e.g. Polycystic Ovary Syndrome,
medication side effects).
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FINDINGS
Theme I. Descriptive Accounts of Appearance Features: Falling Short of Ideals
In the answers to the ‘feature’ questions, most participants describe themselves as explicitly or
implicitly ‘falling short’ of an ideal appearance defined by size, ‘toned’, smooth, surface, and
ideal proportion. Some go beyond this, naming themselves as ‘ugly’ or their feature as
‘misshapen’, using strong metaphors (e.g. ‘witch’) or compile long lists of appearance features
they hate.
Sub-categories: Different reasons for ‘falling short’:
Oversized: There are many instances of body parts described as too large/ wide/ big/ fat. This
is often about weight related issues (abdomen/ hips/ breasts/ upper arms) but can also relate to
an implicitly ‘delicate’ body ideal, against which feet, teeth or nose are seen as too large. The
body part most nominated in this category is the abdomen, followed by thighs, nose, upper
arms, bottom, teeth, chin, breasts and feet. This group was comprised of mostly women; a
couple of men thought their nose was too big, and a few were unhappy with the size of their
abdomen (one also with his large feet). While women referred to this part of their bodies as their
‘stomach’, ‘tummy’ or ‘abdomen’, the men referred to ‘excess weight on my torso’ ‘pot belly’
‘beer belly’ ‘too big belly’ or the feminising ‘wide hips’.
Undersized: In contrast to the above, bodies were also described as ‘too small’. The
predominant issue in this category was having too small breasts. For several women, having
breasts that were ‘small’ or even ‘shrunk’ from ageing was a major issue. Several women were
unhappy about being short and especially having short legs. Some participants of both gender
felt they were too thin, and a few people were unhappy because their height was reduced by a
curved spine or round back. One man complained about a general ‘lack of build’.
Misshapen: Participants felt that parts of their body did not look ‘right’: they were ‘misshapen’; ‘a
funny shape’; marked by scars or skin conditions, or plain ‘ugly’. Several participants described
scars on their stomachs, faces or hands (‘stomach misshapen by large appendix scar’; ‘keloid
scar on jaw line, ugly and difficult to hide). The size and shape of their nose (‘bump on the
bridge; long and crooked) was an issue for some, including one woman who had suffered from
bullying and being called ‘witch’ at school. Several people had another facial ‘feature’ (e.g.
vitiligo, birth marks, bad teeth), and some felt that the lines in their face made them look older or
‘miserable’. Other respondents disliked their legs, as they were marked with broken veins,
varicose veins, scars ‘worry about my scar in terms of meeting someone new’ or just ‘horrid’ or
‘dreadful’. Respondents also said their hands or feet looked ‘deformed’ or ugly, and that their
skin was ‘unsightly’ ‘ugly’ or ‘caused me to stay in the shadows’ through skin conditions, e.g.
psoriasis, or stretch marks. Some female respondents felt their breasts were ‘poorly shaped’.
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Feeling abnormal: Some participants went further than that in saying they felt ‘abnormal’
‘freakish’ ‘spoilt’ ‘substandard’ or ‘ruined’. Several men with psoriasis said that they looked ‘odd’;
felt ‘abnormal’ ‘rejected’ or ‘different’. Women said that they ‘felt abnormal’ or ‘would prefer to
look normal’. Others who felt abnormal named a variety of other causes: ‘freaky looking’ head,
‘different to others’ eyes and forehead, looking ‘like a skeleton’ because of baldness, a blind
right eye that ‘drifts the wrong way’, ‘disfigured looking’ hands or hips due to arthritis or odd
shaped toes. Interestingly, in this small sample, feeling abnormal was the issue that exercised
the greatest number of men.
Tone: Many female participants wrote about falling short of the ideal of the ‘taut, toned body’
(Bordo 1993). A lot of these women described their abdomen as ‘flabby’, ‘saggy’ or ‘wobbly’.
Other complaints included ‘saggy’ or ‘droopy’ breasts, ‘wobbly’ or ‘undefined’ thighs, upper arms
not being toned enough, and complaints about having a ‘sagging’ or ‘crêpey’ neck. Others do
not like the baggy skin under their eyes; or they feel generally untoned, e.g. after mastectomy.
What is striking in this category is the emotionally charged language in which many women
describe the way their body parts hang and move: ‘flabby’, ‘sagging’, ‘droopy boobs’ ‘fat and
wobbly’.
Proportions: Many women described their body as not balanced, or out of proportion. For some
this was because of a body part (waist, thighs, breasts) that was disproportionally too large in
comparison for the rest of the body, others felt that their legs were relatively too short, and for
several women, having differently sized breasts was an issue. Having a too short upper body,
too small breasts in relation to the overall body, being too broad and having too thin lips were
also issues. One woman described an overall sense of her body being out of proportion, with
eyes, mouth, nose too close together, over-sized breasts, short legs, big arms and small hands.
Smoothness: Skin conditions caused many respondents to fall short of the smooth-skinned
ideal, especially those with psoriasis who described their skin as rough, ‘scabby’ and ‘scaly’.
Several women were unhappy about cellulite, ‘lumpy’ or ‘dimpled’ thighs while several
participants felt they had a generally ‘bad complexion’. One woman with acne scars described
herself as feeling ‘like a knobbly-faced witch’. A few complained about unattractive, hard skin on
their feet.
Outline: Some participants felt that a body part spoiled the outline of the body. These could be
ears that ‘stick out’, an eye that ‘protrudes’ or an abdomen that ‘bulges’. One respondent felt
unhappy about her ‘protruding lower jaw’. Conditions that resulted in changes in posture (‘round
back’; ‘stooped shoulders’; ‘knocked knees’; ‘walk with a limp’) were also an issue.
Gender issues: For some participants appearance issues were strongly gendered. One male
respondent felt that he was small of build and not masculine enough, while women worried
about ‘masculine’ hair on the face or body (‘makes me feel freakish as women are not supposed
to be hairy’; ‘facial hair … not socially/ culturally acceptable on a woman’; ‘I am a woman and
don’t want hairs on my chin, chest and nipples;’ ‘The ‘Masculinity’ of the hair on my face’).
Another woman complained about having masculine hands; One woman also felt that small
75

easts made her ‘flat chested’ and ‘not womanly’. A few women referred to an entrenched
stereotype of the ugly witch, describing themselves as ‘like a knobbly-faced witch’ ‘my head tilts,
which … gives me a fat witch like appearance’; ‘a nose which is long and crooked, like a witch’.
One male-to-female transsexual described ‘my appearance is the defining key to how others
react / respond to me…my transition is still incomplete for now, causing me stress in society.’
Criticism of the ideal: Participants explicitly criticised appearance ideals and the expectation of
perfection. People also expressed their dislike of the media obsession with youth and beauty in
more general terms. One woman stated that she became bulimic ‘striving for vogue
appearance’. The others related ‘society’ to their personal appearance issues:
‘those of us who are ‘different’ cannot meet their unrealistic expectations’
‘in society’s eyes I am obese’
‘I know that others will judge me by my appearance, and I resent this’
‘society likes people with perfect bodies, so you have to try twice as hard’
‘' The Ideal' image the media has is probably a young film star, not something most of us
can aspire to! Especially if one is over 25’
Theme II. Personal Meanings of Appearance
1.) Self and Appearance
In the ‘free text’ space, respondents explored in more detail what their appearance meant to
them in the context of their lives. Appearance was connected strongly to their sense of self. This
could take the form of a disruption to their sense of self (not accepting or hating the present self,
wishing to go back to a former self) or a disruption of biography (not fulfilling one’s potential in
life or not following a ‘normal’ life course). Appearance issues could also take a great toll on
confidence and self-esteem. For some participants, appearance features were also strongly
connected to ageing and feeling old.
Disrupted selves: For some participants appearance issues caused disruptions in their sense of
identity.
Hate and Shame: Such accounts were characterised by hate and shame participants felt
towards their bodies, or parts of their bodies. A man with vitiligo felt ‘ashamed and disgusted by
the way I look’; for two women, these strong negative emotions were caused by the
inescapability of the conditions: ‘I hate the way my skin [psoriasis] rules my life, but there is no
escape’ ‘It [weight] rules my life—I hate the way I look. I hate myself’ ‘I am ashamed of my
appearance and it holds me back’.
Troubled: Several women wrote about having troubled relationships with their bodies and selves
(‘I cannot identify reasons for my negativity towards my self [weight; Dwayne’s syndrome]’; I
wish I was more positive about my life [mastectomy]’; ‘My skin colour has always troubled me’)
The others thought that they were maybe more negative about themselves than their
appearance issue warranted.
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Different selves: A few women felt that their real selves were ‘hidden’ behind their appearance
feature. In one case, covering the feature could recover the ‘real self’ (‘I am sometimes like two
different people—one with my make-up on, but another when I have no make-up on [acne]).
Another woman felt that her heavy glasses ‘hides the real me and I cannot do much about it’,
while another thought that her appearance did not reflect her true personality.
Mourning for former selves: A couple of participants saw their current state as temporary and
wanted their unblemished former selves back (‘My weight and if I ever will be slim again’; ‘when
will I go back to the way I used to look [male, vitiligo])
Complexity: Other women described complex relations between appearance and emotions. One
described how her weight bothered her if she felt low generally, and another related bulimia to
psoriasis via the stress produced by having an eating disorder.
Disrupted biographies: Many participants wrote about difficulties with achieving their full
potential in life due to appearance issues.
Work: Some women felt that their appearance reduced their confidence and prevented them
working their level of capability: ‘only ever worked at clerical level’ [issues with nose/
complexion]; ‘ruined my counselling career’ [nervous squint/ eczema]; ‘prevented me getting or
going for jobs’ [facial rash]; ‘I'm sure my boss would be pleased if my eyes are straightened’.
Relationships: Several women thought their appearance made them less attractive and
therefore unlikely to find a (new) partner. Especially one young woman connected her ‘plain
appearance’ to her inability to find a partner: ‘I would like to get married but I suspect I shall
never have the chance’ ‘my appearance has meant I have never had a sexual relationship or a
boyfriend’.
Pessimism: There were female participants who related the distress in their lives to their
appearance; feeling that they could never have the life they wanted: ‘I dream all the time about
what I want but I know it will never happen because of the way I look’ [issues with weight, nose,
hair, face, body, legs, breasts]; ‘if I looked different my life would have turned out better’ [oddshaped
legs]; ‘if I wasn’t feeling so bad about my feature I could do anything I wanted’ [round,
‘babyish’ face] ‘don’t feel I have reached my full potential in life’ [‘abnormal looking’ breasts].
One woman with a birthmark felt that people tended to take pity on those who were ‘different’,
not letting them have a fair chance at proving themselves.
Positive Outcome: Participants spoke of their past difficulties with adjusting to their appearance
or dealing with other people’s responses, which had been resolved positively: ‘I do not feel I
have let it [thin upper body, fat lower body] stop me from living a full life’; ‘I thought that no one
would ever marry me with my skin [psoriasis]’ ‘it has turned out OK with me getting a good job’
[male, cannot straighten knee] ‘My problem is so much better and has improved my life as
much. In the past I felt so bad about my appearance.’
Confidence: In addition to those who felt their potential in life was reduced due to their
appearance sapping their confidence, some said that their appearance reduced their confidence
or self-esteem in general. This could be related to internal feelings; ‘the way I feel in myself
[eczema]’; ‘acne … makes me feel bad about myself’. Other participants related their loss of
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confidence to other people’s reaction (‘it takes one event’; ‘[confidence] alters the way people
portray you’). There was a sense of a vicious circle, where it was the lack of confidence that
induced people to behave in undermining ways.
Ageing and feeling old: Women related their appearance to ageing, or felt that they were ‘aged’
by their appearance. One woman commented that there was a ‘disrespect towards the elderly’
which made getting old more difficult.
Aged by appearance: Several women said that their feature (e.g. ‘turkey neck’; ‘old looking
hands’; ‘bags under my eyes’) made them look older.
Feeling one’s age: Participants of both genders related their changes in appearance to getting
older. This could be seen with fatalism ‘starting to look my age’; ‘age is catching up with me’ or
there could be a struggle to keep former good looks.
2.) Other People’s Responses
Many participants were strongly attuned to other people’s responses to their appearance
‘feature’, whether from acquaintances and ‘other people’ in general, or their own partners, family
and friends. However, some respondents were feeling self-conscious or avoided exposure
because of the responses they anticipated from others.
Direct responses from other people: Many respondents felt that comments or other reactions
(staring) from other people were an issue. This could range from casual comments to sustained
bullying.
Comments and staring: Participants noted that comments from other people about the
appearance feature (e.g. eye problem/ psoriasis/ scar) were an issue. Some said they were
stared at because of their appearance feature: ‘People stare specifically at them (eyes)’. A
couple of these especially noted that people looked but did not engage: (‘children are the only
people to ask questions’; ‘people will ‘judge’ but not say on appearance’). While comments and
staring were mostly just mentioned as an issue, some noted their emotional responses. One
woman with Dwayne’s syndrome felt ‘embarrassed and self conscious’ by others’ comments
and one man with vitiligo felt ‘ashamed and disgusted’ by the way other people looked. One
woman said she found people staring at her legs amusing, and another felt angry when
strangers commented on her scar.
Bullying: A few participants described being bullied: One woman was called ‘witch’ through
childhood because of her crooked nose, the other because of her psoriasis: ‘I have spent my life
being laughed at, pointed at, and called names’.
Responses from partners, family and friends: Participants often wrote about responses from
people close to them. While the majority was very positive, even casual comments by partners
could be very hurtful.
Positive responses: Some participants with appearance issues (e.g. body hair, scar, psoriasis)
felt that their partner, family and friends gave them support and reassurance, which improved
their own confidence
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Dissonance: There were respondents who noted a dissonance between themselves and their
family’s view of their appearance ‘feature’. One woman with acne felt it was not taken seriously
by her family, whereas three others felt their family thought they were ‘fine’ or ‘perfect the way I
am’. In contrast to this, one respondent said ‘my feature [untoned stomach] is mainly noticeable
to me’ while others said their appearance issues of a general nature (round, ‘babyish’ face;
feeling drab and ‘frumpy’) led to low self esteem.
Hurtful responses: 2 women wrote how hurtful comments made by their partners affected their
relationship. One woman said her husband had made a negative comment about her differentsized
breasts ‘when drunk’, which led her to avoid undressing in front of him ‘no matter how
many positive comments he has made before or after’. Another woman with pregnancy stretch
marks said that ‘slight comments from [husband] really hurt even if he says he’s joking.’
Misjudgements: Many participants felt that they were being ‘misjudged’ by others because of
their appearance. This was stated in general comments about society and in descriptions of
being ‘misjudged’ because of their appearance, either as unhealthy or contagious, or seen as
something they were not.
‘People judge’: One man with arthritis, one woman with fat imbalance and another woman with
very large feet and ‘no interest in fashion’ said they were aware that their appearance made
people judge them.
Unhealthy: Several people with psoriasis said they were falsely seen as contagious (‘catching’;
‘contagious’ ‘like measles’ ‘people sometimes shun me… afraid that they may catch it, which is
hurtful). One man with scoliosis stated that ‘it looks unhealthy’ and a woman with morphea
sclerosis said it made her ‘look dirty’. One very thin woman said that ‘people think I’m anorexic’,
while one woman who had gained weight was concerned because ‘people think I’m pregnant’.
Misunderstood: 6 participants were seen as something they were not because of their
appearance. Two women said they looked too young ‘childish still’; ‘like a baby’. A woman who
had residual effects from shingles said she was seen as ‘half awake’, whereas two women
complained their downturned mouth made them look ‘miserable’ or ‘worried’ when they were
not. One woman was unhappy with herself for letting people treat her as a ‘dumb blonde’.
Internalised responses: Many participants described their own anticipation of other people’s
responses. Some were worried about the visibility of their condition or felt generally selfconscious
about their appearance, while others were sure that ‘people would notice’ and
described their anticipatory nervousness.
Visibility: Participants often noted ‘visibility’ of their feature (e.g. a facial scar, wearing a wig,
psoriasis, thread veins) as the reason why it was a concern for them
Self-conscious: Respondents said they were self-conscious because of a visible appearance
feature (e.g. psoriasis, eczema, pregnancy stretch marks).
Anticipated response: Others described a more detailed anticipation of other people’s
responses: e.g. ‘I’m worried people will notice [body hair]; I feel people stare at me sometimes
[acne]; I am embarrassed at my eczema…I feel people are looking.’ ‘I feel people are always
looking at the worst parts of my body’. Some of these reacted to other people in anticipation of
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them noticing: ‘I try to hide my face with hair/ make-up’ ‘nervous, jittery around others’, ‘avoid
photographs’. Others were embarrassed in social situations, e.g. when handing over money
[woman with hand eczema] or when talking to unknown people [woman with facial rash].
3.) Coping with Appearance
This is a very important theme given the aim of the overall study. Many of the respondents
wrote about how they coped with their appearance issues. The majority said their appearance
was not important to them or did not bother them; other things in life were more important.
Some also developed a pragmatic stance: one should be grateful not to be worse; life goes on;
one should come to terms with what one can not change. Others said they accepted their
appearance as a part of them or had stopped trying to hide their feature. In contrast, others
coped by concealing their appearance feature.
Not important: Some respondents said their appearance issue (e.g. alopecia, mastectomy,
facial scars) did not bother them or were not important to them. Some said that other things in
life or the ‘inner person’ were more important. Nevertheless, people said that they would like
nice clothes/ made an effort for their friends.
Pragmatism: There were respondents who had developed a pragmatic approach. Some
described appearance as a fact of life which one had to accept; ‘life is too short to worry too
much’ [woman with psoriasis]. For others, it was important to be grateful ‘it’s not worse’ [woman
with body hair]; ‘I’m healthy, I value that’ [sensitive about breasts]. There were also those who
saw it as counter productive to dwell on appearance: ‘I try just to get on with it as there is
enough suffering in the world without me feeling sorry for myself’ [woman with psoriasis and
general ageing]; ‘I just carry on the best I can’ [woman describing herself as ‘pigeon chested
and short legged]; ‘life goes on. I can’t afford to be upset by it.’ [woman with protruding lower
jaw]; ‘I think it is important to be positive and remember that what matters is not how you look
but what sort of person you are. If some people judge by appearances then I consider that to be
their problem, not mine!’ [woman with collapsed nose bridge].
Acceptance: Some respondents said that they accepted themselves as they were. ‘This is how I
am and I am happy with that’ [man with acne]; ‘It’s who I am and I will not change for anyone’
[woman with large nose, weight issues]; ‘I have a facial birthmark & I’m OK with it’ [female]. For
some, this also meant not trying to hide their appearance feature: ‘I’d rather be comfortable than
covered up’ [man with psoriasis]. Of these, some respondents also saw their issue as an
opportunity for personal growth: ‘I have tried to use my appearance in a positive way to help
others’ [woman with birthmark]; ‘dealing with others’ reaction to my scar has taught me to use a
range of coping strategies’ [female].
Hiding: Other participants, mostly women, described having developed strategies to hide their
features [body hair, ears that stick out, psoriasis, scarring, thread veins, overhanging abdomen]
through clothing, make-up or hairstyle.
Not coping: Some respondents described not coping to varying degrees. This could be by
‘hiding’ their feature not as a positive achievement but as a result of how bad they felt about
themselves ‘I try to hide my face with hair/ make-up as I feel people stare at me’ [woman with
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acne]; ‘Feel very negative about the way I look, often try to cover up as much as possible’
[woman with weight issues and bad teeth]. Others said their appearance prevented them from
going out and socialising, with a few women saying their feature [weight issues, psoriasis,
pregnancy stretch marks] prevented them from wearing a swimming costume or swimming.
There were also women who said they sometimes could not face going out and socialising with
others, whilst other respondents described being completely isolated: ‘I keep myself to myself …
now prefer solitary activities’ [man with psoriasis]; ‘Basically lived under hat for 30 years. No
social network’ [man, scalp transplant gone wrong]; ‘[appearance] has an overall negative effect
on my interactions with people in general’ [woman with issues around weight, knocked knees,
being short].
4.) Practical Issues
Several respondents noted practical difficulties related to their appearance problem. This could
be a difficulty to find clothes that fitted, or they found that they now could not wear ‘nice clothes’
or stylish shoes. The pain and disability of the underlying condition was also an issue,
sometimes more than appearance. Many people resented the time, effort or expense needed to
treat or conceal the condition.
Clothes/ Shoes/ Makeup: Many respondents felt their appearance problems caused practical
difficulties in finding clothing (or they could not wear the clothes they usually wore); others could
not wear stylish shoes or could not/ had to wear makeup. The main problem in this category
was clothes, especially for women with mastectomies, who found that they had to dress
differently: ‘I can’t wear nice clothes because I bulge’; ‘I have to choose clothes that cover up’;
‘Asymmetry and having to wear expensive bras’. Other women found it hard to buy clothes
because of their large size, while those with large or asymmetrical breasts found it hard or
expensive to buy bras. Women with large or deformed feet said they were not able to buy
attractive shoes, and a man with psoriasis resented the ‘constraints on dress’ this caused. One
woman said she could not put on makeup to cover her acne, and another said she had to wear
makeup all the time to cover a birthmark.
Pain and disability: For others the pain, disability and discomfort caused by the underlying
condition was as important, if not more so, than the appearance issues. This was especially true
for those suffering pain and disability from arthritis. People with psoriasis said that their skin was
‘itching’, ‘sore’ or ‘irritable’, one man was concerned about the skin on his hands ‘because I
work with my hands’. Several women with weight issues felt ‘uncomfy’ ‘debilitated’, ‘slow and
inactive’ or ‘a problem as regards movement/ exercise’. One man with a stoma bag was
concerned with the practicalities and smell of changing bags, and another man with fibromyalgia
(FMS) was concerned with the amount of pain his condition caused.
Time spent on appearance: Some respondents begrudged the time, effort and money spent on
their appearance. Some of those with psoriasis said that treating their condition was timeconsuming
(applying treatments and taking showers to reduce irritation, intensive hospital
treatment), and several women found their excess body hair costly and time consuming to
remove.
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5.) Time Structures
What was striking about many of the responses was that people gave it a ‘whole life’ context,
stating how long they had had their condition and what had changed in their lives.
Duration: Respondents outlined since when, or for how long, they had their condition. This
illustrated the magnitude of their distress ‘spent half my life fighting this problem’ [man with RA];
it ‘[acne] still saps all my confidence, 40+ years later [female]. It could also stress that people
were ‘old hands’ at managing their condition and had learnt how to cope: ‘I am used to [psoriais]
and can hide affected areas’ [female].
Changes: This was relevant for many respondents, and was important for those with
conditions, especially skin conditions that could ‘flare up’ or change according to the seasons, or
the hormonal cycle. Some respondents wrote how their appearance, or coping strategies,
improved or worsened over time. Other respondents wrote about changes in coping with their
appearance, or life changes (divorce, changing jobs, children leaving home) had affected how
they coped with their appearance.
Milestones: Respondents mentioned especially relevant ‘milestone’ events, such as diagnosis
or beginning of conditions, years at school or childbirth.
COMMENTARY
Respondents wrote of a mix of appearance-related concerns, including those relating to
disfigurement, weight/shape and also the effects of ageing. This is an important point. Those
working in the area of disfigurement should note that the concerns of those affected are not
limited only to the consequences of their disfiguring condition and these should not be treated in
isolation.
The pressure exerted by socio-cultural standards and the resulting self-ought discrepancy are
widely evident in the responses. These are particularly salient in the responses to Theme I,
focusing on the sense of falling short of societal ideals. The second theme illustrates the
influence of appearance concerns on attributions for many aspects of the life course including
disruption to employment and relationships. Change was seen to exacerbate distress, including
the impact of life events, such as divorce and children leaving home, changes to social
groupings, and also changes in the status of their condition, for example, fluctuations in chronic
conditions. For some, there was a sense that significant proportions of their lives had been
dominated or given over to their appearance issue.
The impact of the responses of other people’s reactions and judgements is also highlighted, and
several respondents mentioned their concern about possible as well as actual responses.
There is also a reminder within this theme that partners, families and friends can offer both
positive support and be unhelpful.
A wide range of coping strategies are mentioned. Effective techniques include acceptance,
relegating the appearance concern to a low level of importance in the overall life experience,
and a sense of pragmatism. Others talked of coping less well, and of hiding the object of their
appearance concern to the best of their ability.
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Practical issues, such as the need for particular shoes or clothes, or the need to use makeup
are mentioned, and many resented the time, effort and money required to deal with, or disguise
aspects of their appearance. Associated functional issues and pain relating to the underlying
condition were also apparent, particularly in those with arthritis, and for those with skin
conditions.
These responses illuminate the quantitative data obtained in Study 1. They are also a reminder
of the multi-factorial nature both of appearance dissatisfaction – which is often an amalgam of
several issues, and to factors determining levels of adjustment to these issues. The responses
are also an expression of the dynamic nature of adjustment.
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STUDY 3
LONGITUDINAL QUANTITATIVE STUDY OF CHANGE AND
STABILITY IN PSYCHOLOGICAL ADJUSTMENT TO
APPEARANCE
Study leads: Nichola Rumsey, Rob Newell & Andrew Thompson
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RATIONALE
Thompson and Kent (2001), Rumsey and Harcourt (2005), Bessell and Moss (2008), Jenkinson
et al (in preparation) and other commentators have noted the pressing need for longitudinal
research to explore the extent of stability and change in adjustment to disfigurement over time.
Study 3 reports a longitudinal study in which responses to standardised measures were
repeated over a 9 month period. Study 4 (included in the follow-on studies) reports qualitative
data from in-depth interviews of a sub-section of respondents who identified themselves as
stable in their adjustment, and those who perceived their adjustment levels to have changed.
Due to the delay in the contracts process, the initial data collection point was later than originally
anticipated. In order to complete the longitudinal study within the life of the grant funding, the
follow-up period was shortened in comparison with the plan in the original protocol, and the
design simplified to comprise one additional data collection point, at 9 month follow-up. This
change required a modification to the ethical approval via an amendment.
METHOD
All participants in study 1 who opted in for further studies (n = 1221) were sent a follow up
questionnaire pack (see appendix 9) at 9 months (see methods section of Study 1). 349
completed questionnaires were returned.
RESULTS
Participants
Of the 1265 participants at baseline, 349 participants completed questionnaires again at the 9
month follow-up.
There was no statistically significant difference between those who responded at time 2
compared to those who did not according to gender ( = 2.707, df = 1, p = 0.100), method of
recruitment ( = 0.691, df = 1, p = 0.406), or objective visibility ( = 0.347, df = 1, p =
0.556) (Table 3.1).
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Table 3.1 Response rates for responders and non-responders at follow-up
Non-Responders Responders
Gender Female 611 (69.7) 256 (74.4)
Male 266 (30.3) 88 (25.6)
Total 877 (100%) 344 (100%)
Recruitment Community 438 (47.8) 176 (50.4)
Clinic 478 (52.2) 173 (49.6)
916 (100%) 349 (100%)
Concern Visible 424 (46.3) 168 (48.1)
Not Visible 492 (53.7) 181 (51.9)
916 (100%) 349 (100%)
Independent samples t-test revealed that those who responded at follow-up had a significantly
higher mean level of appearance discrepancy (p < 0.001) and valence (p = 0.002) than those
who did not respond, although the effects sizes were small (d = 0.24) (Table 3.2).
Table 3.2 T-test comparisons between responders and non-responders at follow-up
Measure Non-Responders 1 Responders 2
Mean SD Mean SD p
Discrepancy 29.21 11.36 31.90 11.33

Table 3.3 Descriptive and Inferential Statistics for responders and non-responders at follow-up (p-value
for paired samples t-test)
Correlation Differences
r ICC1 Mean SD p
Discrepancy .688 .816 -0.36 9.00 .469
Optimism .776 .873 0.11 2.31 .374
Support Satisfaction .596 .747 0.25 4.69 .323
Social Comparison .675 .806 0.06 5.88 .861
Valence .738 .849 -0.33 5.71 .281
Salience .719 .835 0.18 6.00 .579
Fear of Negative Evaluation .757 .861 0.60 7.54 .143
DAS .841 .913 1.18 9.21 .017
HADS Anxiety .768 .869 0.20 3.16 .245
HADS Depression .746 .853 0.17 2.82 .256
Aggression .798 .888 -0.06 5.98 .858
Positive Affect .633 .775 0.64 7.48 .113
Negative Affect .729 .843 0.30 6.73 .416
Predictors of Adjustment at Follow-up
Social anxiety and social avoidance (DAS 24)
70.7% of the variance in DAS24 for the longitudinal sample is accounted for by the regression
model given in Table 3.4 and this effect is statistically significant, = .707, F(16, 262) = 39.599,
MSE = 80.24, p < .001.
In comparison to the model for the baseline data, statistically significant effects remained for
gender, optimism, FNE, social acceptance, valence and appearance discrepancy, with the
direction of the effects remaining the same. For the baseline data, age, objective visibility,
satisfaction with social support and salience were all statistically significant predictors of DAS24.
However these effects were no longer significant for the longitudinal data. No additional
variables were significant longitudinally compared with the baseline model.
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Table 3.4 Regression Model for DAS24
Variable Coef Std
Error
Beta t p VIF
Constant 41.04 7.421 5.53

Table 3.5 Regression Model for Anxiety
Variable Coef Std
Error
Beta t p VIF
Constant 7.887 2.633 3.00 .003
Age 0.033 0.016 .108 2.12 .035 1.501
Gender
Male --- ---- ---- ---- ----
Female 0.209 0.492 .019 0.42 .672 1.156
Recruitment
Community --- --- --- --- ---
Clinic -.335 0.402 -.037 -0.83 .406 1.121
Living Status
Alone --- --- --- --- ---
With Friends 0.685 0.724 .049 0.95 .345 1.548
With Partner 0.750 0.492 .078 1.53 .128 1.503 .067 .002
Objective Visibility
No --- --- ---- ---- ---
Yes -0.138 0.421 -.015 -0.33 .744 1.224 .002 .489
Optimism -0.470 0.078 -.367 -6.05

Table 3.6 Regression Model for Depression
Variable Coef Std
Error
Beta t p VIF
P
Constant 13.828 2.371 5.83

Table 3.7 Regression Model for Aggression
Variable Coef Std
Error
Beta t p VIF
P
Constant 38.79 6.729 5.76

Table 3.8 Regression Model for Positive Affect
Variable Coef Std
Error
Beta t p VIF
Constant 18.348 5.753 3.19 .002
Age -0.059 0.034 -.104 -1.73 .086 1.495
Gender
Male --- ---- ---- ---- ----
Female -1.443 1.069 -.072 -1.35 .178 1.158
Recruitment
Community --- --- --- --- ---
Clinic -0.652 0.881 -.039 -0.74 .460 1.130
Living Status
Alone --- --- --- --- ---
With Friends -3.015 1.570 -.118 -1.92 .056 1.547
With Partner -2.278 1.067 -0.129 -2.13 .034 1.496 .095

Table 3.9 Regression Model for Negative Affect
Variable Coef Std
Error
Beta t p VIF
Constant 23.481 5.282 4.44

0.016), and optimism (r = -0.183, n = 344, p = 0.001). They were also positively correlated with
appearance discrepancy (r = 0.129, n = 345, p = 0.016), valence (r = 0.211, n = 349, p < 0.001),
salience (r = 0.153, n = 346, p = 0.004) and FNE (r = 0.136, n = 346, p = 0.012).
These results suggest that younger, pessimistic people, who do not feel socially accepted, who
self-report a large discrepancy from the norm, worry about what others think and place a high
value on appearance are more likely to change on the DAS24. However in a multiple
regression analysis only social acceptance of belonging is a significant predictor of absolute
changes in DAS 24 (i.e. after accounting for the effect of acceptance no other variable provides
an additional contribution to the absolute changes in DAS 24).
Anxiety
Changes from baseline to follow-up in anxiety were found to be negatively correlated with age (r
= -.179, n = 345, p = 0.001, two-sided), optimism (r = -0.117, n = 347, p = 0.001) and positively
associated with social comparison (r = 0.134, n = 349, p = 0.012, two-sided).
These results suggest that younger, pessimistic people, who compare themselves to others are
more likely to experience change in anxiety. However, age is the dominant factor and is the only
variable predictive of absolute changes in anxiety in a multiple regression analysis.
Depression
Changes from baseline to follow-up in depression were found to be negatively correlated with
age (r = -.174, n = 345, p = 0.001, two-sided), social acceptance (r = -0.143, n = 348, p =
0.007), optimism (r = -0.203, n = 347, p < 0.001), satisfaction with social support (r = -0.115, n =
346, p = 0.033) and positively associated with appearance discrepancy (r = 0.150, n = 348, p =
0.005), valence (r = 0.186, n = 352, p < 0.001) and FNE (r = 0.113, n = 349, p = 0.035, twosided).
These results suggest that younger, pessimistic people, who do not feel socially accepted, who
are less satisfied with their social support, who self-report a large discrepancy from the norm,
evaluate their appearance negatively and fear negative evaluations from others are more likely
to experience a change in depression. Optimism is the best predictor. In a multiple regression
model no variable makes a significant additional contribution into the prediction of the absolute
change in HADS depression after the inclusion of Optimism.
Aggression
Changes from baseline to follow-up in aggression were found to be negatively associated with
optimism (r = -0.232, n = 344, p < 0.001) and positively associated with social comparison (r =
0.187, n = 346, p < 0.001, two-sided) and salience (r = 0.134, n = 347, p = 0.013, two-sided).
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These results suggest that more pessimistic people, who compare themselves to others and
place a high value on appearance, experience a change in aggression. Optimism is the best
predictor and in a multiple regression model both optimism and social comparison are
statistically significant predictors of absolute changes in aggression ( = 0.266, F(2, 316) =
12.042, MSE = 16.801, p < 0.001).
Positive Affect
None of the variables are significantly correlated with absolute changes in Positive Affect.
Negative Affect
Changes from baseline to follow-up in negative affect were found to be negatively associated
with age (r = -0.169, n = 334, p = 0.002), social acceptance (r = -0.213, n = 336, p < 0.001),
optimism (r = -0.257, n = 336, p < 0.001), satisfaction with social support (r = -0.123, n = 335, p
= 0.025, two-sided) and positively associated with appearance discrepancy (r = 0.227, n = 336,
p < 0.001, two-sided), valence (r = 0.212, n = 340, p < 0.001), social comparison (r = 0.163, n =
338, p = 0.003), salience (r = 0.182, n = 337, p = 0.001, two-sided) and FNE (r = 0.261, n = 340,
p < 0.001).
These results suggest that younger, pessimistic people, who do not feel socially accepted, who
are less satisfied with their social support and self-report a large appearance discrepancy from
the norm, negatively evaluate their own appearance, place a high value on appearance and fear
negative evaluations from others are more likely to experience change in negative affect.
Optimism and appearance discrepancy are the best two predictors and both are jointly
predictive of absolute change in negative affect in a multiple regression ( = 0.098, F(2, 313)
= 16.935, MSE = 20.779, p < 0.001).
DISCUSSION
The findings of this study provide further, strong support for the framework operationalised by
the research programme. Indeed, the regression model accounted for a very impressive 70.7%
of variation in the DAS24 at 9 month follow up – a figure that is greater than the (already very
sizeable) variance accounted for at baseline. Similarly, the regression model predicted greater
variance in the measures of HADS anxiety, HADS depression, and positive and negative affect
at 9 month follow up than at baseline. Furthermore, the majority of the components that
predicted appearance-related anxiety at baseline continued to do so at follow-up and there was
also a high degree of consistency in the predictors of HADS anxiety and depression,
aggression, positive affect and negative affect at both baseline and follow-up.
Overall, the results of this study indicate a picture of stability rather than change over the 9
month follow-up period: mean scores on most outcome measures changed relatively little over
time (although there was a small, significant increase in mean DAS scores between baseline
96

and follow up). However, focusing on relatively consistent mean scores could detract from the
fact that many participants did report a change in self-report outcomes over time. Participants
who reported a change in outcomes tended to be younger, have a more pessimistic outlook and
be more affected by appearance cognitions (salience and discrepancy) and their views of others
(feeling socially excluded and more bothered by others’ judgements of them). This follow up
data thereby supports the findings of study 1 by once again identifying changeable, sociocognitive
factors to inform appropriate, supportive interventions. However, as with the crosssectional
study, it would be an error to assume from these findings that appearance-related
distress and concerns are not an issue for older people.
Given the challenges of recruitment into longitudinal research (see Rumsey & Harcourt 2005),
the response rate achieved in the current study (27.5%) is very good and suggests that the
research questions and study design were acceptable and of importance to the study group.
On the whole, the sample in this study can be considered representative of the cross-section
sample (study 1). However, compared with non-respondents, those who participated in the
follow-up study had, at baseline, reported placing slightly more importance on appearance and
greater discrepancy between self and ideal appearance – supporting the suggestion (Rumsey &
Harcourt 2005) that people experiencing difficulties in relation to their appearance may be more
engaged with research in this area than those who are resilient to appearance-related distress.
Until now, there has been a paucity of longitudinal research into psychosocial adjustment to
visible difference. With a sample of 349, this data set constitutes, to the best of our knowledge,
the largest follow-up study in this field. However, there is still a need for further longitudinal
research with a longer follow-up than was possible in the current study. There is also a need to
explore individuals’ subjective experiences of change over time and, for this reason, the
qualitative study (study 4) was carried out with a subset of participants from this longitudinal
study.
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STUDY 4
A QUALITATIVE INVESTIGATION OF CHANGE AND
STABILITY IN PSYCHOLOGICAL ADJUSTMENT TO
APPEARANCE
Study lead: Andrew Thompson, Rob Newell, Sally-Ann Clarke, Elizabeth Jenkinson & Hayley
James
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SUMMARY
• Twenty-six participants were purposively selected from a group who had previously
completed the ARC battery of psychometric measures at baseline and follow-up at 9
months.
• Participants identified themselves into one of four groups of adjustment (‘well adjusted
stable’; ‘distressed stable’; ‘improvement in adjustment’; or ‘deterioration in adjustment’).
• Individual questionnaire data were analysed to ascertain levels of adjustment according
to the quantitative measures and semi-structured interviews were conducted.
• Template analysis was used to explore and refine themes derived from the aims of the
research programme and the conceptual model used in Study 1: predisposing factors to
different levels of adjustment; intervening cognitive processes associated with different
levels of adjustment; and outcomes associated with different levels of adjustment
• There were discrepancies between the participants’ self reported perceptions of
adjustment and their scores on psychometric measures, particularly for the stable well
adjusted and improvement groups.
• Predisposing factors including experience of negative reactions from others and daily life
stressors were common across all groups.
• Those who identified themselves as well adjusted reported greater cognitive flexibility in
relation to their core views of themselves and of their appearance. They also reported
making external attributions (i.e. linking cause to others) and to have developed coping
skills that boosted self-efficacy.
• Those who identified themselves as well adjusted reported a high level of engagement in
social behaviour and not engaging in avoidance strategies, whereas the other groups
reported low levels of engagement and use of avoidance in coping. Maintaining stability
of positive adjustment was described as exerting an ongoing demand on resources.
• Improvement was associated with good aesthetic outcomes following treatment, greater
awareness of cognitive coping strategies, and social and professional support.
• Deterioration was associated with the occurrence of negative life events, and increase in
appearance salience due to a range of factors (i.e. others reactions, functional disability,
need for further treatment).
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• The study reinforces and exemplifies findings in the related quantitative cross sectional
and longitudinal surveys and has implications for our understanding of adaptation in
visible difference and our ability to respond appropriately.
RATIONALE
Appearance altering conditions can be associated with a range of psychosocial difficulties, yet
many people adapt positively and succeed in minimising the impact of visible
difference/disfigurement on their lives.
Previous research suggests that individual adjustment is affected by a complex interplay of
physical, cultural and psychosocial factors (Thompson & Kent, 2001; Rumsey & Harcourt,
2004). Small scale longitudinal qualitative studies have followed up people with visible
difference over time. Most notably the early work of MacGregor (Macgregor et al, 1953;
Macgregor, 1979) involved interviews over a sixteen year period. However, this work has not
focussed on adaptation over the course of time and its relationship to events in the person’s life.
Little is known about the course of psychological adjustment to appearance over time and
factors which facilitate positive coping. Accordingly, our study sought to follow-up people with
visible difference over nine months, with a specific focus on factors associated with better or
worse adaptation to their appearance and its psychological concomitants.
METHOD
Aim
To explore in depth individual explanations of adjustment to appearance over a nine-month
period amongst those who defined themselves as:
1. Well adjusted to visible difference without variation during the study period (well adjusted
stable).
2. Poorly adjusted to visible difference without variation during the study period (distressed
stable).
3. Having experienced an improvement in adjustment during the study period
(improvement in adjustment’).
4. Having experienced a deterioration in adjustment during the study period (‘deterioration
in adjustment’).
Participants and Sampling
Participants were attendees at NHS clinics for a variety of appearance-related issues who had
completed measures at baseline and 9 month follow-up in our associated quantitative study.
Participants answered a questionnaire item in this study to self-select into one of the four
categories above. Twenty-six participants were recruited to the qualitative longitudinal study.
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There were ten well adjusted stable’; four ‘distressed stable’; seven ‘improvement in
adjustment’; and five self selecting as ‘deterioration in adjustment’.
Measures
A semi-structured interview schedule (see appendix 10) was constructed by the project team
based on a priori themes emerging from previous studies of visible difference. Responses to a
range of quantitative measures used in the main study (DAS; FNE; & HADS) were also
examined, using these participants’ responses both at baseline and to the longitudinal survey.
Procedure
Participants were interviewed individually at a venue of their choice by one of three of the
Research Associates. All interviewers received training in interviewing prior to the
commencement of the day. Interviews were audio recorded and transcribed verbatim.
Data analysis
Template analysis (King 1998) was used to collate and analyse the qualitative data in line with
the a priori themes. This process involves the development and application of templates related
to the a priori themes and also the modification of these themes through a process of iterative
re-examination and analysis of the data.
Questionnaire data (HADS, DAS, and FNE) were compared using the Wilcoxon Signed Ranks
test for mean scores and Jacobson’s Reliable Change Index (RCI) for individual scores. Chi
Square was used to compare the four self-selected groups (1 stable coping well, 2 stable
distressed, 3 changed-improved, 4 changed-deteriorated) with RCI scores categorised into four
groups (1 no significant change and score within the non-clinical range, 2 no significant change
and score within the clinical range, 3 significant change-improved, 4 significant changedeteriorated).
RESULTS
Template Analysis
Participants offered a considerable range of responses, which were exhaustively captured
under the template headings. Where a theme is obvious from its title, no further expansion of its
meaning is given. Otherwise, a sentence or brief paragraph demonstrates the nature of the
responses, which have given rise to the identification of this theme. All themes arose directly
from participant responses, but due to space considerations only a subset of the supporting
quote material is included here.
The data are summarised according to 3 stages: predisposing factors; intervening processes;
outcomes. These are reported here by proceeding from generalised responses to those which
are more specific to the subgroups of the sample.
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Stage 1 – predisposing factors – all groups
Life stressors, stigmatisation and appearance concern
Participants in all groups reported a range of life stressors, both general and focused more
specifically on health. These included financial stressors (unemployment, time away from work
due to poor health) social difficulties (relationship / family difficulties); health concerns
(symptoms, pain, disability).
Participants in all groups reported appearance focused stressors. These included perceptions of
others’ negative reactions towards their visible difference, and fear of negative evaluation. In the
stable distressed group, these were a source of significant distress, and appeared to be the
largest barrier to successful adjustment.
Although the design of this study does not permit quantitative comparison between the groups,
there was no direct evidence of consistent differences in the frequency of such negative
reactions across the groups.
Stage 1 - predisposing factors – changed improved group
1. External triggers for positive change
Recent medical intervention leading to improved appearance, health, pain or function
“Yes, but I’ve got a pellet right on the radial nerve, on the side of my head and I
think that’s what’s causing constant discomfort. To a certain extent I thought
“right, once you have your eye out you’ll feel better” (01/clin/0034/eye)
“It did make a big difference to me having that stomach operation, a very big
difference, I’m in proportion now, I might be fat but I’m in proportion
(04/clin/0051/pla)
2. Social support integral to adjustment / positive change
“You’ve described quite a few changes, how did they come about, can you
just tell me when you first noticed things changing or starting to improve?
Well when I got this support worker. This is through J again, she got him, South
Yorkshire Housing Association they call him M. He's a lovely bloke and he got
me all sorts sorted out...” (03/clin/1047/prosth)
“Do you think it's anything you’ve done to help yourself make that sort of
change or do you think it is just a case of time? I think if you’ve got a good
support system around you like family and friends, if I'd been on my own I don’t
think I'd have coped like I have, so yeah I've had a lot of
support”(05/clin/1002/burns)
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Stage 1 – predisposing factors – changed deteriorated group
1. External triggers for change: Negative life events
Negative life events appear to contribute to greater appearance salience, greater perceived
differences in appearance compared with the norm, disappointment following medical
intervention or realisation that hopes for surgery and a normal appearance were unrealistic and
unachievable, and a sense of identity loss, and disruption to self-concept.
Health condition resulting in visible difference and functional difficulties
Participants described a range of physical health issues related to visible difference and
functional ability that had led, in their view, to deterioration in their ability to adapt to visible
difference. These included: physical health issues, side effects, deterioration in physical health /
function and likelihood of future health deterioration.
“The pain, unable to walk, everything’s on that, if I could only I could walk better
I'd be fantastic” (03/clin/1030/prosth)
Discrimination at work
“…..they found a reason to make me redundant and I knew perfectly well I would
not get another job because every time I go for a job it's always good
communication skills, and when they see me I don’t even get a call back”
(05/clin/1059/derm)
.
Trauma at time of acquiring a visible difference
“then I was taken down the week after to have all the packing taken out of my
face, obviously I was nil by mouth and when they brought me back on to the ward
they’d left the top half of my lip just dangling like a horses bit and then the doctor
handed me a mirror and I'd got my lip actually dangling in my mouth. So
obviously I totally freaked out and it was just, I just felt as though I was being
treated really cruel” (03/clin/1018/H&N)
Stage 2 - Intervening cognitive processes – stable coping, stable distressed groups
These processes were divided into the areas of 1) schema/core beliefs, 2) cognitive appraisals
and attributions and 3) self-appraisals and self-efficacy
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1. Schema / core beliefs
Differences in self identified coping status were reflected in contrasting schemata and beliefs
about the self and appearance.
Core schema - representation of self / self-concept
Stable coping group
This group described stable, positive beliefs about self:
“day to day you don’t think about it a lot, Its only like I said those photographs I
didn’t particularly like.... but you don’t really realise things are different really”
03/clin.1003/plast-fitz.
“I was disfigured for life in a very visible part of my face so I mean the adjustment
to that has been enormous and I am still going through the adjustment six years
on I’m still going through the adjustment but its not a case where I’ve ever been
afraid to show myself in public or anything like that I don’t sort of hate myself or
hate the way I look” (01/clin/0073/las)
The group’s reports also suggested low appearance valence (i.e. the visible difference was
periphery to self-concept) and a self-concept comprising multiple dimensions, rather than
focussing on appearance.
“I’m an artistic fairly temperamental person, um, I enjoy socializing and,
goodness! I can define myself by the things I enjoy doing I suppose, which is
socializing and cook and doing art, listening to music” (01/clin/0017/eye)
Stable distressed group
By contrast, this group described stable negative beliefs about the self, and high appearance
valence (the visible difference appeared more central to the self-concept) and concern with
visible difference as a defining feature of self.
.
.
“You know I'm just thinking that they're really really lucky they can just walk into
sommat and they’ll just be completely at ease where as I'd just be falling over
myself all the time. Sort of trying to impress people and the more I try to do that
bigger idiot I feel and look probably” (03/clin/1016/derm-barns)
“it matters to me what people’s impression of me are and because I've got these
symptoms with tummy and eyes and leg that you know they'd think I was
something lesser of a person“ (03/clin/1037/prosth)
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Appearance schema - beliefs about overall appearance and visible difference
Stable coping group
Responses from this group suggested the ability to maintain positive beliefs about overall
appearance, which accommodated visible differences. This occurred in a context of
appearance schemata with multiple dimensions and within which visible difference was
peripheral.
.
“I just don’t consider it to be a disfigurement” (05/clin/1047/ent-sw)
“there’s no option but to accept it and move on..and I think I can’t remove it. It’s
me now. I can’t change it so live with it” (05/clin/1052/ent-sw)
Stable distressed group
This group were concerned about visible difference, which was more central to their view of
their appearance, and held negative views about the way they look. They also held negative
views about visible difference.
“What, how it makes me feel? A lot of the times I wish my sister hadn’t saved me,
a lot of the times I think to myself I wish they'd taken it off. I mean like if I'm
getting dressed to go out I'll stand in front of the mirror and I'll look at myself and
think what would I look like if I was normal, why has it happened to me....”
03/clin/1017/plast-rals
“I feel ugly, I feel really really ugly. Just other people looking at me, how I feel in
myself, it sort of like a self conscious thing” (03/clin/1016/derm-barns)
.
2. Cognitive appraisals & attributions
Appraising events – others reactions to self
Stable coping group
This group described external attributions for others’ reactions to visible difference:
“well it varies…you look different, also they think your burns are disgusting as
well, they think somehow they are contagious… and they are just generally bigots
mate but some are a bit slow, they live in a boring little town” (01/clin/0048/pla)
Stable distressed group
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This group tended to advance internal attributions for others’ reactions to visible difference, and
to personalise these responses.
“It's as though I'm making other people uncomfortable as well as me being
uncomfortable ...” (03/clin/1016/derm-barns)
Appraising self – in relation to others
Stable coping group
This group tended to make downward social comparisions with others – both to other people
with disfigurement and to other people more generally, emphasising that they were often in a
better position than others.
“there’s always someone worse off than yourself, you see it all the time and you
thank your lucky stars you’re not there...you’ve got to do this” (05/clin/1047/entsw)
Stable distressed group
This group showed an idealised view of others and those with no visible difference.
“I think I've let it get on top of me and I think I'm weak for letting that happen
because when you see other people on, you know if you look at other people on
the telly or things like that, if you see other people on the telly or you hear stories
about what other people have gone through you're thinking, I sometimes get
angry with myself thinking you're an idiot, not pathetic, you're just silly for letting it
get on top of you, apart from my skin and my asthma, I've got other things, other
health problems I've got, they're not limiting, I think I've been limiting myself, you
know” 03/clin/1016/derm-barns
3. Appraising self – perceived efficacy to cope with appearance-related difficulties
Stable coping group
This group recognised their difficulties as ongoing and demanding but within their control. They
sought to overcome challenges, and recognised that positive adjustment required personal
resources and taking an active role in coping, employing a range of behavioural and cognitive
strategies. The concept of self-efficacy distinguishes well between this group and the stable
distressed group. The latter group reported less sense of their ability to successfully adapt to
issues affecting their lives.
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“I’m in charge ...I think that’s the way I’ve lived my life. Get on with it and do the
best you can...sod em and get on with It you’ve got to be confident and feel
invincible (in past job) so that has helped me cope with this. I’ve been on plenty
of bad jobs so you have to make the most of it‘’ (05/clin/1047/ent-sw)
“I can stand up and again I can get excited and enthusiastic about getting my
point across, but it’s something that has helped me. So I think with work you
actually build that confidence up, you have opportunities and you take those
opportunities.... So through life you have to take opportunities you have to learn
from experiences and move forward, um, but I don’t think you’re conscious of
it....” (01/clin/0080/pla)
“The important thing is that you come to terms with it as quickly as possible
because the longer it goes on the worse it becomes...you can’t hide from it, it’s
there” (05/clin/1052/ent-sw)
Stable distressed group
This group did not report perceiving themselves as able to change their situation, thoughts and
feelings, but rather viewed their difficulties as pervasive, uncontrollable, and unmanageable.
Interestingly, one participant reported that constantly changing treatment and other
circumstances were instrumental in preventing adjustment to their condition.
“I think because it's been bad, my skin, it's been bad for so long, I think I've just
come to accept that it's bad, I've been told that, well I've been told three things,
one that I've been very unlucky, and the other one, what was it, that I'll always
have it and I've known since I was little that I'll always have it, one on my
neighbours says oh you’ll grow out of it and I'm saying I'm still waiting to grow out
of it and I think I've just come to accept that it's always going to be bad and that’s
why I've let it get on top of me so I've accepted it in a silly way, you know, and I
think that’s why I let it get on top of me and I let it affect me, you know social life
and other things because I've accepted that it's bad so because it's bad I
shouldn’t really, I shouldn’t go out, I shouldn’t mix much, not just go out”
(03/clin/1016/derm-barns)
Stage 2 - Intervening cognitive processes – changed improved group
Where participants identified themselves as having experienced an improvement in their
adaptation, they displayed similar characteristics to the stable coping group, in terms of their
core schema and appearance schema focus. The group reported making downward social
comparisons and offering external attributions to the reactions of others to visible difference.
Once again, a sense of self-efficacy was important to this group.
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Additionally, they showed awareness of the role of psychological factors in mediating their
visible difference issues. Specifically, they reported a need to understand oneself and how one’s
thinking affects one’s behaviour and feelings.
“Hm. I should have given it some more thought. I suppose it’s to do with, the only
thing I can think of is, to do with how you value your identity, do you feel that
you’re just a surface or do you feel that you have value as a person”
(01/clin/0034/eye)
Stage 2 – Intervening cognitive processes – changed deteriorated group
This group shared features with the stable distressed group. Changes in their lives seemed to
have provided triggers for disruption to the self-concept, sense of independence and sense of
self-efficacy. Life changes also triggered an increase in salience of appearance, both in
response to the reactions of others and to an understanding that hopes of a ‘normal’
appearance in the future might be unrealistic:
“I was desperate, I went back to work pretty much having the operation and I
said to the girls I'm desperate for a face, all I want is a bloody face and when I
finally got it I was just so disappointed you know this doesn’t look like….”
03/clin/1018/H&N
“Because they're grown up and haven’t seen, I grew up with kids who had polio
and odd things wrong with them but now they won’t they grow up in this super
perfect world and anybody is imperfect is either, you know your either frightened
of it or you just avoid just to get away. I had the extreme of when I went back to
work, someone who wouldn’t even sit near me because she said I made her feel
physically sick. That was the extreme” (05/clin/1059/derm)
Stage 3 – Outcomes – stable coping well group, stable distressed group
1. Behavioural outcomes
Social interaction was crucial in all elements of outcome across the groups. Within this, the
ability to interact with others, confront issues of visible difference and enlist support where
appropriate distinguished between those who self-identified as being in the coping well or
distressed groups.
Stable well
Participants in this group reported pro-social behaviours such as explaining their visible
difference and talking openly with others about this and the associated issues:
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“Only when people don’t understand what I’m saying I mean its not their fault,
unless I explain that I haven’t got a tongue anymore, most people are fine with
me” (05/clin/1052/ent-sw)
“...and somebody came up and said “what have you done” and I’m thinking you
know me and the only thing that has changed is the scar there...I said I’ve had
the birthmark removed and “oh, right” like that. It’s like playing rugby and having a
bit of a scar after a rugby match and coming to work and “what’s happened to
you?” it doesn’t come across any more than I’ve banged myself, or when you’ve
explained what it is... oh right...never noticed it” (01/clin/0080/pla)
Part of this openness involved not hiding the visible difference from others or avoiding situations
where it might be seen:
“I always go about like that , I don’t try to cover it up” (05/clin/1047/ent-sw)
“I just started to wear them, oh what the hell. The benefits it wearing a short
sleeved shirt outside in the summer out-weighs any other sort of thought...”
(05/clin/1052/ent-sw)
“Yeah (laughs) that’s right, especially if you’re interested and you want to see her
again and again and I was thinking it was stupid because you can’t hide an
aspect from someone, they have to see the whole picture haven’t they, and I was
trying to hide it from her” (01/clin/0073/las)
.
Stable distressed
By contrast, this group were socially impaired and particularly characterized by avoidance
tactics, both cognitively and behaviourally, in that they would hide their visible difference from
others, use distraction and avoidant thinking and deny or conceal their feelings.
.
.
“I don’t seem to have the confidence to let other people see it if you know what I
mean so consequently I just either cover it up or you know don’t do it basically”
(03/clin/1037/prosth)
“As you can see I’m wearing short sleeves at the moment which I didn’t do
before. I’m always covered up because I’m self-conscious and I hate people
looking at me when my skins bad. So I just.. Actually before I went into hospital I
didn’t leave the house for three weeks. I wouldn’t even go and visit friends I just
felt so miserable. I didn’t want to do anything” (05/clin/1056/derm-brad)
“Well I tend to keep myself as busy as I possibly can, I think it takes your mind off
it. If I'd got, if I was to sit, and I know that’s going to get like that when I get older,
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.
more infirm as they say, then I shall sit and probably think about it more but I do
try to keep my mind on other things to take me off it” (03/clin/1037/prosth)
“Well usually when I'm with friends and that or relatives you know you put a brave
face on kind of thing and then I can laugh about it, depending on how I feel in
myself you know and then other times you know it just gets to you”
(03/clin/1037/prosth)
Stage 3 – outcomes – changed improved group
In this group, planning for change and acceptance of change were reported.
“We are...the house is on the market. I don’t know when whether it’s gonna sell
but we are hoping to move up to North Wales to be close to Nigel’s family, and
buy something small and that’s a very significant part of my rehabilitation, can I
call it. This is just; this house is too big for us” (01/clin/0034/eye)
.
Visible difference was also seem as a catalyst for health related behavioural change:
“Stopping smoking [after leg amputation]. I only ever stopped once before in my
life for 8 months because I was a very heavy smoker which caused the loss of my
leg actually”(03/clin/1047/prosth)
Stage 3 – Outcomes – changed deteriorated group
It was not possible to identify common themes in behaviour change for this group. This is
probably because this group was itself very heterogeneous, with changes occurring for a broad
range of reasons.
Comparisons between self-selected adjustment groups using data derived from the
questionnaires
Stable coping well group
There were no significant differences between mean scores at time one and time two on the
HADS for this subset of participants (anxiety subscale Z = -1.37, p = 0.16, depression subscale
Z = -1.55, p = 0.12), DAS (Z = -0.77, p = 0.44) or FNE (Z = -0.15, p = 0.87). RCI scores however
showed significant improvement on the HADS (anxiety subscale n=2, depression subscale n=1)
and FNE (n=2), as well as significant deterioration on the FNE (n=1).
Despite having self selected as coping well, three participants scored within the clinical range
for the HADS anxiety or depression subscale at time one and two. There were also a wide
range of scores for both DAS 24 (22-54) and FNE (21-59) measures suggesting variability in
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appearance anxiety and coping with some participants clearly not coping well as defined by
questionnaire response.
Stable distressed group
There were no significant differences between mean scores at time one and time two on the
HADS (anxiety subscale Z = -1.51, p = 0.13, depression subscale Z = -0.37, p = 0.70) DAS (Z =
-0.36, p = 0.71) or FNE (Z = -0.44, p = 0.65), although RCI scores showed that two participants
had experienced significant deterioration in appearance anxiety and coping (FNE n=1, HADS
depression subscale n=1).
As might be expected for those self-selected as distressed, three participants were within the
clinical range for the HADS anxiety or depression subscale at time one and two. DAS (range 60-
75) scores were also higher than those reported by the stable coping well group, although FNE
scores (range 28-56) were similar.
Changed improved
There were no significant differences between mean scores on the HADS (anxiety subscale Z =
-1.12, p = 0.26, depression subscale Z = -1.45, p = 0.14), DAS (Z = -0.57, p = 0.56), or FNE (Z
= -0.52, p = 0.59), but RCI scores showed a large significant improvement on the FNE for two
participants. However, RCI scores also showed that more participants (n=3) had experienced a
significant deterioration (FNE n=1, HADS depression subscale n=2) despite having self-selected
as change improved. Three participants scored within the HADS (anxiety subscale n=1,
depression subscale n=2) clinical range at time one and remained within the clinical range at
time two.
Changed deteriorated group
Mean scores were higher on all measures at time two compared with time one, but there were
no significant differences on the HADS (anxiety subscale Z = -1.35, p = 0.17, depression
subscale Z = -0.55, p = 0.58), DAS (Z = -0.44, p = 0.65), or FNE (Z = -1.82, p = 0.06). RCI
scores however showed significant deterioration on the HADS for three participants (anxiety
n=2 and depression subscale n= 3) all of whom had moved into the clinical range.
Two participants scored within the clinical range for the HADS anxiety or depression subscale at
time one and two and RCI scores suggested there had been no significant change.
Finally, Chi-Square analysis suggested no significant relationship between participants selfselected
coping categories and their individual RCI scores for any measure.
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DISCUSSION
Stage 1 – predisposing factors
Life events had a considerable effect on the ability to adapt to visible difference in all groups.
The reactions of others to those with visible difference have been reported in many studies, and
this issue is repeated here, with particularly importance for those who coped less well.
Stage 2 - Intervening cognitive processes
Participants’ responses suggest important differences in cognitive processes between the
coping well and distressed groups, which are similar across stable and changed groups.
Participants in the coping groups gave responses consistent with more flexible core and body
appearance schemas and less emphasis on physical appearance and visible difference. Their
responses suggested greater external attribution in their responses to others and greater sense
of self-efficacy.
Stage 3 – Outcomes
Participants in the two groups were distinguishable by differing behaviours, with the coping
group being more likely to be engaged socially and to report behaviours and attitudes
inconsistent with cognitive and behavioural avoidance of issues concerning visible difference.
Discrepancy between self-selected category and questionnaire results
There were striking variations in the pictures of adjustment over time offered by participants’
scores on the standardised measures and their self rated adjustment status over time. More
research is needed to interpret the reasons for this discrepancy.
However, the results highlight the need to take account of subjective perceptions of adjustment.
Furthermore, this study offers further vindication of the need for mixed methods studies.
CONCLUSION
These findings, taken in the context of the previous studies, have clear implications for our
understanding of adaptation to visible difference, and, by extension, for potential strategies to
help those whose adaptation is absent or incomplete. Such intervention could usefully build on
the strategies exemplified by people in the coping well group here, through emphasis on
addressing issues with regard to core beliefs around the role of appearance in its contribution to
the self system, the importance of behavioural experimentation in mediating and changing such
beliefs, and the role of social perception and interaction in mediating successful adaptation. The
influence of life changes in mediating the course of adaptation requires further investigation.
Furthermore, any intervention should be evaluated with a mixed methods approach.
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114

FOLLOW-ON STUDIES
STUDIES 5-13
As outlined in the section on the design considerations for this research programme, this
collaboration adopted a mixed methods approach in addressing the question of which
psychosocial factors contribute to adjustment to disfiguring conditions, with the aim of delivering
informative, balanced and useful research results. To complement the quantitative data from
Studies I and 3, a series of follow-on studies were designed using a range of predominantly
qualitative methodologies.
These studies were developed in order to expand understanding of the overall research
framework, (Study 5: A Qualitative Study of the Experiences of People who Identify
Themselves as Having Adjusted Positively to a Visible Difference), or particular elements
of the framework that have been under-researched in the past, such as the impact of ethnic
group membership (Study 6: Focus Groups of BME Community Views to Facial
Disfigurement and Visible Differences; Study 7: A Qualitative Study Exploring he
Experiences of UK South Asians Living with vitiligo), the role of social comparison
processes (Study 8: Social Comparison Processes), and appearance concerns and
aggression (Study 9: Appearance Concern, Hostility & Social Situations).
Condition specific population groups about whom little research exists were also targeted as
being worthy of exploratory study. The Advisory Group encouraged the collaboration to
consider the impact of appearance concerns on intimate situations (Study 10: Developing a
Scale to Measure the Impact of Appearance Concerns on Intimate Behaviours), and also
highlighted the lack of knowledge and understanding about the psychosocial consequences of
disfigurement and appearance concerns amongst general practitioners – the primary
gatekeepers to services (Study 13: Working with Patients with Visible Differences: General
Practitioners’ Beliefs, Decision Making Processes and Training Needs). Patients seeking
treatment for arthritis have commented to several of the authors that their appearance concerns
are rarely addressed in the health care system (Study 12: In the Context of Rheumatoid
Arthritis, Does Appearance Matter?). The role of the combination of functional needs and
appearance concerns in people with prosthesis has been alluded to by researchers in the past,
yet remains under-researched (Study 11: Women with Limb Prostheses: Experiences and
Adjustment). The follow-on studies also reflected the personal research interests of the
members of the collaboration.
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STUDY 5
A QUALITATIVE STUDY OF THE EXPERIENCES OF PEOPLE
WHO IDENTIFY THEMSELVES AS
HAVING ADJUSTED POSITIVELY TO A VISIBLE DIFFERENCE
Study leads: Diana Harcourt & Nichola Rumsey. The focus groups were conducted and
analysed by Katie Egan
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SUMMARY
• This study aimed to explore the experiences of people reporting positive consequences
of having a visible difference and identifying themselves as having positively adjusted to
living with an appearance that differs from the norm.
• Focus groups and interviews were conducted with 12 participants with a variety of visible
differences.
• Data were analysed using inductive thematic analysis.
• Four main themes emerged from the data: appearance, personal growth, relationships
with others, and coping strategies.
• Resilience, determination, positivity, downward comparisons, social support, spirituality,
humour, taking things day-by-day, taking responsibility, distraction, and helping others
were seen as paramount to positive adjustment.
• The findings provide insight into the behaviours and personal outlooks that may
contribute to adaptive coping and have significant implications for future research and
intervention strategies aimed to help those who exhibit poor adjustment to visible
difference.
• The use of focus groups in this study suggests these can be a fruitful, yet logistically
challenging, approach for further research.
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BACKGROUND
To date, the majority of research in the field of visible difference has focused on the experiences
of people who report having problems such as difficulties in social situations, and on negative
outcomes, such as anxiety and depression. However, many people living with a visible
difference do not report such problems. For example, whilst 30-50% of participants in a study of
650 people with a visible difference reported significant levels of distress (Rumsey et al 2004),
the majority (50-70%) did not. Furthermore, more than 70% of respondents to a survey by the
Cleft Lip and Palate Association reported positive consequences of having their cleft. Moreover,
Thompson et al. (2002) reported that some people with vitiligo spontaneously developed coping
strategies not unlike those used within treatment. More, recently, Saradijian et al. (2008)
reported that some people using a prosthesis were using a variety of strategies to minimise their
distress. Faulkner and Thompson (2006) purposively selected people whom identified
themselves as coping well with a disfigurement and found a range of naturalistic coping
strategies being used.
Clearly many people do adapt positively to the challenges they face, and succeed in minimising
the impact of their visible difference (Rumsey, 2002). It has been suggested (Eisermann, 2001)
that it is unethical to focus on pathology and not to consider positive aspects and outcomes of
visible difference. Whilst some research has examined positive aspects of chronic illness
including benefit finding and adversarial growth (e.g. Petrie et al, 1999; Sodergren & Hyland,
2000; Sodergren, Hyland, Crawford & Partridge, 2004), there is currently very limited research
focussing on visible difference. That which has been conducted has shown that humour, a good
sense of self, family support and faith all contributed to resilience and success amongst
individuals with Moebius syndrome (Meyerson, 2001) and inner strength and a valued social
circle were identified in those with a craniofacial difference (Eiserman, 2001). These studies,
and others (e.g. Fortune et al, 2005) have focussed on specific conditions as opposed to visible
difference more generally.
The current study was conducted with people with a variety of visible differences. It aimed:
• To investigate positive consequences of living with a visible difference. Specifically, what
are they? Why are they considered positive and what facilitates them?
• To inform the development of psychosocial interventions intended for those individuals
who report problems associated with having a visible difference.
METHOD
A review of available quantitative measures (e.g. The Silver Linings Questionnaire; Satisfaction
with Illness Scale) failed to identify any standardised scales that would give a sufficiently indepth
understanding of the issues relevant to people with a visible difference. Instead, a
qualitative methodology was felt more appropriate to capture rich, personal accounts of
participants’ positive experiences and perceptions of living with a visible difference.
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A focus group methodology was chosen since these groups aim to encourage participants to
evoke memories and attitudes from each other, thereby providing a richness of data not
possible from one-to-one interviews (Frith 2000). Data collection was approached
pragmatically. Originally it was intended that data collection would be via focus groups alone;
however, due to logistical difficulties, some individual interviews were conducted so as not to
exclude any willing participants who were unable to attend focus group meetings.
Participant Characteristics & Recruitment
All participants had a self-reported visible difference of some kind, had taken part in the large
cross-sectional study (study 1), and had indicated that they felt that they had adjusted well to
living with a visible difference and would be interested in taking part in further research.
Thirty-eight potential participants were sent details of the research. The final sample consisted
of 12 participants (9 females) aged between 31 and 80 years (mean age 56.7 years). Reported
visible differences were: psoriasis, port wine stains, scarring, amputations, burn injuries, impact
of thyroid eye disease, mastectomy, alopecia and altered hand or nose.
Procedure
Three focus groups and 4 interviews were conducted by the researcher (KE), using an interview
schedule based on previous literature. Each lasted approximately one hour and was audiorecorded
with permission. The audio recordings were transcribed verbatim.
Analysis
Transcripts were analysed using an inductive thematic analysis (Braun & Clarke 2006). Due to
differences in the data collection methodology, focus groups and interviews were initially
analysed separately and then collectively. Themes were verified by another researcher to check
the credibility of the analysis and a summary of findings was sent to participants who were
invited to feed back on the results.
RESULTS
Four main themes emerged from the analysis: importance of appearance, personal growth,
relationships with others, and coping (which consisted of 7 sub-themes).
1. Importance of appearance
Participants described how they place little significance on appearance and value other
characteristics and qualities more highly. Many participants made reference to the overimportance
attached to appearance in society and made specific reference to the media and
cosmetic surgery. They also discussed trying to overcome the stigma associated with being
visibly different by talking about it openly and not covering up.
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“if you are just yourself with it, you are not kind of hiding away or being
embarrassed by it, if you can just be confident in yourself… then maybe it’s
showing something.” Jane
Some participants did not perceive others’ reactions to their visible difference to be consistently
negative and this interpretation of other people’s behaviour helped them to be more confident
with their visible difference.
"people don’t necessarily mock you… people do rate you for what you are and
not necessarily for what you look like " Edna
2. Personal growth
Participants felt they had changed in numerous positive ways as a result of living with a visible
difference, including becoming more resourceful, more resilient, having a calmer approach to
daily life, and taking up new interests and opportunities (e.g. choosing career paths which
centred around helping others, meeting inspiring people who they would not have met
otherwise, and finding new religious beliefs). Personal growth extended to improved
relationships with, and understanding of, other people. Some participants also spoke of how
they hoped they had helped other people with a visible difference by sharing their experiences
of how they had coped well.
"it has made me more resilient" Jackie
"I’ve been able to say [to people with similar problems] ‘well yeh I know exactly
what you are going through but it does alter.’ And I think it helps for people to
know” Anne
3. Relationships with others
Many participants talked about how it was helpful that friends and families treated them ‘no
differently’ because of their visible difference. Others appreciated the consideration and support
they had received, especially in difficult times. Some discussed how a lack of family support at
a young age had proven to be a positive experience since it had increased their sense of
independence:
4. Coping
“I learnt to kind of deal with stuff myself. I didn’t really tell my family when I was
growing up…I was quite independent” Jane
When asked ‘How did you deal with difficult times?’, participants explained how they had
chosen to confront and embrace the difficulties presented to them in life and to make the best of
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any situation. Strategies involved acceptance, positivity, a sense of humour, determination, and
dealing with things on a daily basis.
“I’ve just learned to accept that you know I can’t change it, there’s no surgery to
get rid of it...don’t hide it, just get out there and enjoy your life and basically be
positive” Mike
“If I am having a bad day…all I need to is keep reminding myself that...its just a
bad day and know that it is going to change” Jane
Participants also described putting their visible difference in context by placing greater
significance on other aspects of their lives and not seeing it as the cause of other difficulties in
their lives:
“It would be easy to hang every bad day on your disfigurement… Whereas
actually it could be a multitude of other things that are causing it” Eleanor
Participants frequently reported making downward social comparisons as a means of increasing
their sense of well-being and bolstering their self esteem,
“I’m actually quite lucky because I’ve got something that can be quite awful in
some people, so I actually feel quite fortunate” Nick
Other techniques included distraction, practical solutions, giving themselves treats and focusing
on aspects of their appearance (other than their visible difference) that they felt they did have
some control over:
“it’s encouraged me to put a bit of a higher priority on trying to take care of
whatever physical assets I’ve got…, I try and keep fit and everything, I run a lot. I
think I probably…going back to my hair, having kept all my hair…probably err try
and look after the things that are all right, you know.” Nick
Some explained that their ability to cope with their visible difference had enabled them to
develop effective coping strategies they could apply to other situations and difficulties
encountered in their lives.
"Could I have coped with it [chronic pain] if I hadn’t had this [burns] already, I
don’t know? You’re able to deal with problems better" Mike
Some participants identified how having, or finding, a sense of spirituality and faith had been
important. Several referred to not questioning why they had their visible difference.
“To my recollection I’ve never said ‘why me?’ Never, you know. ‘Why not me’
more the case” Eleanor
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Finally, participants spoke very positively about the benefits of support, in particular being able
to talk to someone who had shared similar experiences. Having found this beneficial had
prompted them to share their own positive experiences with others (see above).
DISCUSSION
These qualitative data offer insight into the experiences of adults who perceive their visible
difference to have led to positive consequences, including becoming resourceful, more resilient,
being able to cope with other challenges in their lives and having a different outlook on life.
The findings support previous research within the visible difference and wider health psychology
literature. Specifically, that positive consequences including resilience, strength and an
increased sense of well-being stemmed from: placing less importance on appearance, positive
perceptions of social support (Rumsey et al., 2004); humour and determination (Meyerson
2001); benefits of positive emotions (Tugade and Fredrickson 2004); downward social
comparisons (Festinger 1954); searching for meaning (Taylor 1984); being open to faith,
spirituality and religion (Sodergren and Hyland 2000; Meyerson 2001); and helping others
(Roberts et al 1999). The emphasis on cognitive processing is striking and is consistent with the
findings of Study 1.
Many participants displayed attitudes of acceptance, choosing not to question why they had
their visible difference. They conveyed a sense that everyone is susceptible to adversity and
they did not feel they should be any different.
Whilst all participants in this study felt that they now accepted their visible difference, this had
not always been the case. Their accounts demonstrate how experiences of a visible difference
can change over time and have illustrated a variety of cognitions and behaviours that they
perceive to have played a part in their adjustment over time.
Implications for provision of care
The findings of this study can contribute to informing the further development of interventions,
for example, the need to focus on cognitive processing, including strategies to encourage
individuals to identify positive consequences and not to attribute other problems to their visible
difference.
Implications for research
Focus groups produced rich data which benefited from participants’ interaction with one another
but it is important to acknowledge the logistical difficulties encountered, which necessitated
some individual interviews being carried out and resulted in a relatively small sample size.
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CONCLUSIONS
Whereas previous research has examined positive aspects of disfigurement in particular
conditions, the current study included individuals with a variety of visible differences and
highlighted the similarity in positive consequences and effective coping and adjustment across
visible differences. It illustrated that focus groups may be a fruitful methodology for research in
this area and also highlighted the utility of taking a positive as opposed to problem-focussed
approach. The current study provided insight into a broad range of cognitive mechanisms
which people utilise or develop in order to foster positive adjustment to their visible difference.
These findings could usefully inform interventions and further research aiming to help
individuals who experience difficulty adjusting to a visible difference.
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STUDY 6
FOCUS GROUP STUDIES OF BME COMMUNITY VIEWS OF
FACIAL DISFIGUREMENT AND VISIBLE DIFFERENCES
Study leads: Rodger Charlton, Krysia Saul, Mark Johnson & Nichola Rumsey
Authors of this brief report and data analysts: Heidi Williamson, Jenifer Hughes, Habib Naqvi &
Emma Williams
We would like to acknowledge help in planning and implementing from Daya Singh,
Gurnam Singh, Rukhsana Bibi, Akm Kamruzzaman, Fatima Marzia, Mahomed Saleh &
Rita Saujani.
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SUMMARY
• Nine focus group interviews were conducted with sixty-three participants representing
four South Asian communities on the topic of facial disfigurement and visible difference.
• A number of themes were raised including definitions of disfigurement, cause of visible
differences, the role of the family, reactions from others, social exposure, cultural
differences and medical interventions.
• Religious beliefs and cultural practices cut across the majority of themes that emerged.
They were associated with views about the cause and origin of the visible difference as
well as the consequences of that difference.
• The focus group interviews highlighted the need to implement interventions to reduce
the negative aspects of visible difference and disfigurement. These included raising
knowledge and understanding of the difference amongst the general (minority ethnic)
populations as well as improving the lived experience of those living with the difference
and their family.
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INTRODUCTION
There is a paucity of research exploring the views of different cultural and ethnic groups
concerning individuals with visible differences. As few standardised appearance measures have
been translated, most appearance-related research is therefore conducted in western cultures
(USA and UK) with individuals who have a good command of the English language.
People of South Asian descent, i.e. those ethnic groups originating from the Indian
subcontinent, constitute one of the largest ethnic minority groups in the UK, encompassing 4 per
cent of the total population. It is important to be aware that this group is diverse, as it includes
people who speak different languages, possess varying literacy rates, have different religious
beliefs and who are from different cultural heritages, therefore the heterogeneity of this group
cannot be emphasised strongly enough.
Exploring the views of the South Asian populations regarding visible differences is a priority,
because issues of disfigurement, stigma and shame may be particularly bound to membership
of specific cultural and ethnic groupings (Papadopoulos et al., 1999).
Accordingly, this study was designed to examine the views of members of UK South Asian
communities towards individuals with visible differences
METHOD
Sixty three participants from the West Midlands were recruited to 9 focus groups representing
four South Asian communities: Indian (Gujarati) Hindu, Indian (Punjabi) Sikh, Bangladeshi
Muslim and Pakistani Muslim. Groups were formed with attention to age, gender and ethnicity.
In order that questions and topics were culturally relevant, facilitators were chosen on the basis
of: relevant language skills; gender; identification with, and knowledge of the communities
(Culley, Hudson and Rapport, 2007).
Discussions were held in the language of the group and translated into English for data
analysis. Transcripts were analysed by a team of four analysts using template analysis (Kent,
2000).
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RESULTS
Eight key themes were identified; these incorporated various inter-related sub-themes.
1. Definitions
A number of sub themes were associated with how disfigurement and beauty are described.
There was also evidence of a misinformed association of visible difference with mental and / or
physical disability.
“you always make the assumption that they are not as capable as normal people”
(Bengali young female)
1a. Disfigurement
Definitions ranged from ‘ugly’ to any abnormality or unevenness in the colour, shape or features
of the face and included scarring and amputation. There was some acknowledgement that
these differences could be either congenital or acquired.
1b. Beauty Ideals
Fair, clear skin, symmetrical and proportioned features, a tall and slim physique and long hair
were associated with female beauty. Male participants valued facial hair. Although the emphasis
was on physical facial aspects, there was some acknowledgement that clothes can be
important, and that beauty can come from within and is a subjective assessment.
“In our culture beauty is depends on how beautiful someone’s face is” (Bengali
older male)
1c. First Impressions
Physical appearance (focusing on the face, body posture and function) and dress are the first
things noticed when meeting strangers.
1d. Disfigurement associated with intellectual and physical disability or a ‘poor’
character
Participants frequently felt that disfigurement or visible differences were associated with or
indicative of mental and/or physical disability, or indicated ‘poor’ character: the latter particularly
so if the visible differences were acquired during a fight or accident.
“if their appearance is not normal you can surmise that they are not well”’ (Sikh
older male)
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2. Causation
“you always make the assumption that they are not as capable as normal
people”(Bengali young female)
“if some have disfigured face, this person is not normal mentally” (Bengali older
male)
“(if) due to an accident or fight people may blame him for bad character” (Bengali
young male)
A number of explanations were offered to elucidate the origins of visible differences in people. In
most cases these explanations had their foundations within religious belief or cultural myth.
2a. Religion
A general fatalistic acceptance that disfigurement is the will of the creator and sustainer of the
world and should be accepted as such was the predominant causal explanation of visible
difference that cut across the different religious beliefs.
“This was God’s way of punishing you” (Bengali young female)
“This is Allah’s wish” (Bengali young male)
2b. Individual Culpability
The individual’s, or the mother’s past or current actions, were held to be responsible for
disfigurement. This includes Karma (action/attitude in previous life), visible differences due to an
accident or fighting, and blame attributed to the mother.
“this was God’s way of punishing you” (Bengali young female)
“that child is paying for their karma” (Sikh older male)
“the fathers along with the in-laws blame the mother” (Bengali older female)
2d. Myths/Superstition
The origins of disfigurement were in some cases also attributed to deeply held beliefs that can
be classified as cultural myths. For example, visible difference was attributed to engaging in
sexual activity in pregnancy, getting pregnant during a lunar eclipse, or making fun of someone
disfigured. The superstitious avoidance of people with a visible difference just in case the
‘condition’ was infectious was also highlighted.
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2e. Medical Interpretation
There was an understanding that some visible differences are related to genetic inheritance.
3. Family
This overarching theme encompasses a number of sub themes linked to the family’s attitude
towards, and management of, an individual (normally a child) with a disfigurement. There was
an overall sense of burden and shame, and evidence that visible differences can impact on
marriageability.
3a. Shame
“parents would be worried about their child’s marriage” (Pakistani young female)
“we feel conscious about taking them into the public and being ridiculed, so for
that reason we would not take them out much” (Sikh older male)
There was evidence of the family’s desire to limit the amount of social exposure of the individual
and evidence that having a family member with a visible difference could be a source of
embarrassment. However - there is no shame if the disfigurement was acquired through noble
causes.
3b. Burden
“they tend to hide them away because they see it as kind of a shameful and
embarrassing thing” (Bengali young female)
Many in the focus groups expressed a sense of responsibility (sometimes a feeling of burden) to
care for an individual with a disfigurement.
3c. Marriage
“you could get frustrated at times and think it’s a burden…you have to come back
early to take care of your brother or sister whose disfigured”’ (Sikh young mixed
gender)
“If a boy is disfigured but physically able to earn then he is more accepted in the
family” (Bengali older female)
Disfigurement was thought to have a negative impact on marriage prospects (especially those
of females) and attempts may be made to match people who have disfigurements. Some
expressed a community concern that disfigurements can be inherited.
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“it’s not your partner you are choosing but also the father or mother of your child”
(Bengali young female)
“I think parents would be worried about their child’s marriage if their child was
disfigured” (Pakistani young female)
4. Reactions to visible differences
Groups described their reactions (pity, fear, shock and sorrow) to individuals with visible
differences and expressed a variety of terms they may use in their own language to describe
them.
“Some times we feel sorry for these people” (Bengali older male)
“By looking at a disfigured person, we get shocked.” (Bengali older female)
4a. Encouragement to correct disfigurement
Individuals may be pressed to seek medical attention and this pressure should be accepted as
well-meaning.
“I would advise them to get medical treatment, it is our duty to do so” (Sikh older
male)
4b. Effects on the individual
It was felt by the groups that an individual may feel marginalised, lonely and have low self
esteem.
“They will lack confidence. They might be isolated by others but they will also
isolate themselves” (Pakistani young female)
4c. Use of Stigmatising Language
One group used specific names for individuals with visible differences.
‘Teerah: cross-eyed. Dabh-kraba: scar or uneven’ (Sikh older male)
4d. Acts of Overcompensation
Some groups stated that individuals should be protected from harm and that they pitied them.
Sewa (an Asian concept of social duty and worthy action) was also mentioned.
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“I think I am nicer to a person who has got a disability because in a way you
sympathise with them” (Bengali young female)
“the only reason that they want to marry her is because they want to do her
sewa” (Sikh young mixed gender)
5. Social Exposure
There are several ways in which others (the family) or the individual with a disfigurement may
limit their public exposure. Religious events and employment opportunities were two key areas
discussed.
5a. Family limiting
Family may limit the public exposure of an individual with a visible difference as a form of
protection, but also due to shame
“we would not take them out much because people would stare” (Sikh older
male)
5b. Self-Limiting
An individual with a visible difference may feel pressured by society to keep themselves out of
the public eye.
“I think other people would make it difficult for them (to socialise). You’ll never
get someone with a disfigurement on a stage” (Pakistani young female)
5c. Religious events
It was viewed as acceptable to expose a disfigurement if attending religious ceremonies.
“We tend to be soft hearted in religious events. So people are more
broadminded.” (Bengali older female)
“Religious events will not affect them as much, in places like that people would
be more sympathetic” (Bengali young female)
5d. Employment
Participants believed there are restricted opportunities for individuals with a visible difference.
“It will be difficult for them to get a job.” (Bengali young male)
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5e. Concealment & camouflage
Traditional clothing and make-up may be used to conceal a disfigurement.
“Some times he covers his face and head to the public places” (Bengali older
male)
6. Cultural differences
A number of differences between the South Asian and the Western ‘white’ culture were
identified and these differences were also believed to be influenced by generation.
6a. Western values
The belief that western media dictates what is beautiful and does not show images of those
with visible differences unless the context is medical or to sell products was expressed.
“The media puts too much pressure on people to look a certain way. You never
see a disfigured person on TV unless there is an advert specifically about that”
(Pakistani young female)
6b. White community treats people with disfigurements better
A belief that white western families are better educated and more tolerant than Asian families
was evident in the discussions.
“Their community [white] is more aware, exposed and educated about
differences.” (Pakistani young female)
“They are more accepting to the fact.” (Bengali older female)
6c. Back home
Attitudes are perceived to be different in the homeland but the influence of Bollywood was
thought to be growing.
“I think they would be more tolerant. There’s too much poverty (back home) to
care about these things” (Pakistani young female)
“With the influence of Bollywood, girls want to look more glamorous and I don’t
think it matters anymore if they got a good personality or what sort of person you
are “ (Pakistani older female)
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6d. Generational differences
Elders were considered by participants from the younger generation to be more narrow-minded
and less understanding. There was evidence that skin colour was of particular significance to
elders.
“we (young) understand how things work now, how society is, whereas they
(older) are stuck in their own times” (Pakistani young male)
7. Medical Interventions
7a. Attitudes to medical intervention
Medical intervention is considered acceptable for clear medical reasons or if one’s doctor
advises intervention. However non-essential cosmetic surgery is considered to be going against
God/Allah’s will
“medical is necessary and cosmetic that is a luxury” (Bengali young female)
“It is right to do surgical reconstruction but wrong to do cosmetic surgery. It is
great sin to try to change the way of looks. Allah will punish them” (Bengali older
female)
8. Social Support
The immediate family is considered to be the main source of support, but shame and
embarrassment may prevent families seeking support from external sources (including the
extended family, their community and external support services). There was a general lack of
awareness of the support services available to those with a disfigurement /visible difference. For
example, none of the participants had heard of the charity Changing Faces.
“some people don’t want to go to the doctor because they are ashamed.”
(Bengali young female)
“The extended family stay uninvolved either due to lack of awareness, shame, or
‘just can’t be bothered’ attitude” (Pakistani young male)
“parents are supportive then they’ll do anything the can so their child doesn’t feel
singled out” ( Pakistani young male)
“they would definitely not go to the community” (Bengali young female)
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DISCUSSION
The focus group interviews offered a unique insight into views regarding visible differences held
by South Asian communities in the UK. A number of themes were identified, some of which
have been highlighted in previous literature, in particular the impact of disfigurement upon social
acceptability and the prospect of marriage (Rozario, 2007).
Religious beliefs and cultural views and practices appear to be deep-rooted within the South
Asian population, so it is no surprise to find these entities cutting across the majority of themes
that emerged. They are applied to views about the cause and origin of the visible difference as
well as to the consequences of that difference.
A number of areas were identified that could inform interventions to eradicate the negative
consequences of visible difference. These included education to dispel myths, raising
awareness of sources of support, and the provision of medical explanations for visible
differences. Members of the Bengali older female focus group were particularly keen to express
their suggestions for interventions to improve the experiences of those with visible differences
and those that have children with visible differences (See Table 6.1).
It is also important to emphasise that focus group participants used the terms disfigurement and
disability interchangeably suggesting that physical impairments may be regarded as highly
salient visible differences - this may have implications for future interventions with these groups.
Whilst the methodological approach utilised for this study enabled pertinent issues regarding
visible difference to be highlighted without imposing ‘external’ ideas, especially the use of a
semi-structured ‘topic guide’, it was not always possible to explore issues in depth or allow
participants the opportunity to elaborate on points. Resources did not allow us to conduct further
interviews with communities of similar backgrounds in other locations, or to cover the full range
of cultural groups represented in the UK South Asian population.
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• The myths about the foetal disorders should be dispelled.
• Posters can help.
• Bengali health sessions should be arranged more to raise awareness.
• City council can arrange different ‘talks’ and trainings to encourage people to bring light
to these matters.
• Social workers play a very important role. Children in schools can be made more aware
of these issues. Social circles can be arranged by the city council.
• Women, both daughter in laws and mother in laws should attend these types of social
groups.
• ‘Mohila Shomity’ type of women’s groups can be very helpful.
• Bengali people should have more volunteering mentality to help raise awareness
Table 6.1: Interventions suggested by Bengali Older Females
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STUDY 7
QUALITATIVE STUDY EXPLORING THE EXPERIENCES OF
UK SOUTH ASIANS LIVING WITH VITILIGO
Study leads: Andrew Thompson, Sally Clarke & Robert Newell
Acknowledgements: The authors would like to thank Dr. David Gawkrodger & Dr. Andrew
Wright and Jennifer Vines of The Vitiligo Society for assistance with recruitment and Nicholas
Rosewell for assistance with analysis.
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SUMMARY
• Vitiligo is a condition that results in the visible loss of pigment or colour from the skin.
• Seven in-depth interviews were conducted with British people of South Asian descent or
family of origin living with the skin condition vitiligo.
• The qualitative method of Template Analysis was used.
• Participants described feeling visibly different and all had experienced stigmatization to
some extent.
• For many, cultural specific issues associated with status and practices such as arranged
marriage were intimately related to both stigmatization and social support and
consequently this influenced the individual impact of the condition and the way that this
impact was managed.
• There was a range of distress described within the participant group and many of the
coping strategies used were not dissimilar to the strategies described by other
populations. For example, concealment and avoidance were commonly described.
• The findings of this study broadly support the model developed by ARC but highlight the
need to assess cultural associations of disfigurement. Further, they support the
conclusions of study 6 in suggesting that in addition to individual therapeutic
interventions there may be a need for community interventions aimed at dispelling
myths, and raising awareness of sources of support and treatment.
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INTRODUCTION
Vitiligo is a visible condition affecting the appearance of the skin through the loss of
pigmentation and is consequently more noticeable in darker skinned individuals. It has been
associated with a range of psychosocial difficulties such as depression, impaired quality of life,
low self–esteem and negative thoughts about appearance, difficulties in sexual relationships,
and poor body image (Ongenae, Beelaert, van Geel, & Naeyaert, 2006).
Beliefs about the cause and nature of illness are linked to adjustment and there is some
evidence that such beliefs may vary according to culture and ethnicity (Firooz et al., 2004).
However, the majority of psychosocial research in psychodermatology and in disfigurement has
been with white Western populations (Thompson & Kent, 2001). There has been some
research within the Black American population with vitiligo that has suggested that the loss of
pigment has been associated with stigmatizing causal beliefs associated with being punished
for engaging in sexual activity with White Americans (Porter & Beuf, 1991). Research with
Nigerians with the condition has revealed high levels of stigmatization associated with confusion
with leprosy (Onunu & Kubeyinje, 2003). Previous research investigating the psychosocial
impact of vitiligo in Asian populations suggests significant impairments in quality of life,
particularly in the areas of personal and social relationships and been the condition has been
associated with comparatively higher levels of psychological morbidity (Mattoo et al, 2002).
A detailed understanding of the role played by ethnicity and culture is limited by a lack of
empirical investigation and a heavy reliance on quantitative assessment, using generic
measures that lack sensitivity to cultural issues. The present study is guided by a previous
qualitative investigation of vitiligo in a non-Asian population (Thompson, Kent & Smith, 2002).
The aims here is to explore the ways in which Asian individuals manage and adjust to vitiligo,
and to explore the role of ethnicity and culture.
METHOD
The present study used the qualitative method of Template Analysis (King, 1998). This involves
the iterative development of a coding "template", which summarises themes identified by the
researcher(s) as important and organises them in a meaningful manner.
Participants
Ethical approval was sought from NHS by way of a substantial amendment to the substantive
study protocol. Additionally, further ethical approval was sought through the University of
Sheffield, Department of Psychology Ethics Board, to extend recruitment to a community
sample via the website of The Vitiligo Society, who consented to assist with recruitment. A
group of 15 respondents was initially sought. The inclusion criteria were that participants
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identified themselves as South Asian, were over the age of eighteen, and had had vitiligo
formally diagnosed.
86 South Asian people with vitiligo were invited via letter, from the participating NHS clinics
within the Appearance Research Collaboration (ARC) survey in Bradford and Sheffield. Three
people agreed to participate. An advertisement was also placed on the website of The Vitiligo
Society. Nine people made contact and four people met the inclusion criteria and were
interviewed. The resulting seven participants were all female and ranged in age from 19 to 52
years. All had had vitiligo for over five years and had it on visible parts of their bodies. The
participants described themselves as being either of British Pakistani origin or of Indian or
Pakistani origin.
Data collection
Interviews were conducted using a face-to -face semi-structured interview schedule with six of
the participants and via email with the seventh participant. The semi-structured interview
schedule was devised by the investigators and broadly followed the schedule used by
Thompson et al (2002). Face-to-face interviews took place in an appropriate setting either in
the University or at the participants’ homes depending on preference. All face-to-face interviews
were audio recorded and transcribed verbatim.
Data analysis and interpretation
The transcribed interviews were analysed following a number of steps defined by King (1998).
Each transcript was read several times and an initial template was gradually developed which
was then further developed through an iterative process of comparison between and within
transcripts. Several strategies were used to confirm the emerging themes, including conducting
an audit of the findings, and sending the findings for comment to two of the participants and an
independent British South Asian person living with vitiligo.
RESULTS
In common with the majority of people who have a visible disfigurement, all of the participants
described experiencing intrusive reactions (and in some cases discrimination), and this is a
theme that runs throughout the key themes described below. Five key themes were identified,
which incorporated various inter-related sub-themes.
1. Cultural specific impact of vitiligo
There was a range of direct references to the impact and role of ethnicity and culture in the
participants’ accounts. The majority of accounts were laden with description of culturally specific
material, whilst for two there was a notable absence of such material.
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1a. Status, stigma and cultural practices
For some of the participants, culturally specific themes emerged that were associated with the
value of appearance in relation to both individual and family status. One British born young
woman of Pakistani descent vividly described how vitiligo was particularly stigmatizing.
“…I think there is a [Punjabi] slang term for it…Asian society is a lot based on
looks and status and to have vitiligo obviously puts you down…it’s a stigma…if
you don’t fit in then you kind of like, no matter if you’re really smart or like, or you
work hard it’s still, you have to try that little bit harder”. (AA)
Another participant commented:
“…Asian communities are like that, they always look at you first, what you’re like,
before they look at anything else…” (BB)
Some also spoke of the family shame and of literally being hidden away. This was more evident
when visiting relatives in Pakistan and in contact with the older generation. AA described being
excluded from aspects of family life to the extent that it has affected her ability to learn to speak
Punjabi:
“…mum's friends come over they're, they won't really try and make conversation
with me… that's affected me in the way that I can't, my sisters can speak, Urdu
quite fluently whereas my Urdu's quite bad…” (AA)
“…my grandma [in Pakistan] was like, oh you can’t take her with you [to visit
friends & family] because of her skin, what will other people say”. (AA)
Understandably, direct family rejection was felt more keenly:
““…the older generations still see it as like quite a stigma. Some of the more like
traditional people that I've met, they seem to have a problem with it and more
than anyone else……some people would say stuff but I think...that didn't bother
me like, it was more when like, if my parents said something about it that I'd get
upset rather than if a stranger said something … they're still quite, traditional…”
(AA)
The status of appearance was very evident in discussion of the practice of arranged
marriage:
“…once we had this huge argument…when my mum just said, well who’s going to
marry you with your skin like that, because a lot of arranged marriages are pretty
much based on looks and like status”. (AA)
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“…my parents would have been devastated I'm sure for, you know, devastated
that, you know, their child's got something like that but even more so thinking,
how are we going to marry her off…” (BB)
Related to stigmatization were cultural beliefs about cause, although this was mentioned
infrequently and not by all, and was again commented upon as being related to generation. The
lack of awareness was seen as problematic:
“… older generation aren't educated enough to understand…that it's no fault of
the individual, why it happens” (BB)
“Lack of awareness is a major issue”. (EE)
1b. Loss of ethnic identity
Most participants commented upon the increased visibility of the condition for darker skinned
individuals, and heightened visibility per se was seen as problematic:
“It, it turns your skin white, white and obviously it affects the darker skin more…”
(BB)
“…definitely they feel embarrassed to go out, particularly if they are dark, then
white patches they look worse for dark skin...” (FF)
As well as pigment loss being part of the condition, depigmentation is also used as a treatment
in order to give the skin a unified colour. The prospect of total loss of pigment through either
disease or treatment was perceived in a range of ways. It was seen by some as positive as it
resulted in the vitiligo becoming less visible:
“Even though my dad has this it’s a different situation for him as he’s all white so
he looks normal, where as I am patchy”. (CC)
“…I am quite happy I had the [depigmentation treatment]…since I became all
white it didn’t affect me…” (FF)
Such participants continued to largely describe themselves as accepted by their peers or
community:
“…this young man he said if you don’t mind are you Italian, I said no I'm Indian
and then so many places when first time they see me they always think I am
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European…Then funnily enough people don’t understand that in India lots of
people are very fair…so these are the thing they say, it doesn’t bother me really,
why should it bother me.” (FF)
Some people may say oh does it have some sort of impact on you the fact that
people don’t necessarily realise that I'm Indian or Italian? (Interviewer)
“No, I think [I’ve] enough education to take all these things.” (FF)
However, iatrogenic depigmentation was controversial. For some the total loss of pigment was
perceived as an additional threat, a risk of loss of ethnic identity, with an associated sense of no
longer being recognized as belonging to the community and family:
“I think that's one treatment I would never have because I would just feel like I'd lost
my identity completely…I wouldn't be recognised as Pakistani, I'd be recognised as
White, not that there's anything wrong with that, it's just that that's not me and, if I
went out with my family I wouldn't be recognised as part of the family…my heritage
has gone…” (AA)
One participant who described such a loss of recognition almost posited this as a potential
source of envy, commenting on how Asian culture values lighter skin:
“…Asian people, they want fairer skin…” (GG)
However, she appeared to have defensively aligned herself with being “like a British person”,
possibly as a way of minimizing the impact of feeling rejected. Yet it was evident that she
continued to feel isolated:
“Yeah, I think more like a British person… when I go to functions and things like
that now I'm like more stared at than anybody else but now it's like a little bit
more flattering that it was before…because I'm the only white person there…
(GG)
“She said it to my face, she goes, we were talking about going on holiday or
something and she said oh yeah you could do with a tan then you’d fit in more
with us, but I thought I don’t want to be like you.” (GG)
2. Individual impact of vitiligo
The participants that appeared to be coping least well with their vitiligo were those who seemed
to have internalised the importance of appearance, or who placed high value on it, and saw
themselves as spoiled or damaged as a result of having the condition. As stated above, there
was often a cultural element to the origin of this value.
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2a. Appearance shame and disgust
Many of the participants described feeling ‘disgusted’ and clearly had low self-esteem and were
shame-prone:
“I think it's horrible and disgusting, and I suppose I think that's what other people
think, see and think when I, I don't have make-up on, and I don't feel like it's
me…” (AA)
“…it's horrible, you know, it's still horrible…” (BB)
“…I know it's my vanity, I don’t know, I'm sure people at work don’t sit and look
at me and see if whether I've got any blotches, it is me and how I deal with it and
my paranoia.” (EE)
For those that described being less distressed by vitiligo, other factors or difficulties were either
more salient to them, or they valued appearance less in comparison to other factors such as
education:
“…you never try to cover, you have such a strong personality, I said look so
many problems I have in my life and how I look my face or something, it really
doesn’t bother me…” (FF)
These beliefs were often attributed to their background.
2b. Intimacy and being with others
For some this fear of rejection, of being exposed, tangibly affected their intimate
relationships:
“…I don't think I could ever let someone get close or be close to someone
enough to do that [get married], I don't want to really have kids, like I would like
to, but then I don't want to because I don't want them to have vitiligo…” (AA)
“…Around boys I am very self conscious in case I’m questioned about my vitiligo,
so I don’t really know any boys”. (CC)
“…even not letting my husband see me when I was naked and that’s a factor in it
really, although my husband has never been bothered by it, I have. It's just me
really, how I perceive it, it's probably not as bad as what I think it is but.” (EE)
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“…even not letting my husband see it” (GG)
Some participants made negative downward social comparisons in relation to their own
condition:
“…people have said, well, you know, it could have been worse, it could have
been cancer, you know, and, but then I think to myself, at least they'd still have
their looks…” (BB)
3. Living with vitiligo: coping strategies
A range of coping strategies were used, although all participants described using concealment
at least some of the time.
3a. Avoidance and concealment
“…some of the boys just looking at it, at the patch, a patch on my leg and just like
whispering and I, after that I just went home and I felt, I just cried for ages, and I
didn't, I don't think I went swimming…” (AA)
“…I didn’t actually build up the confidence to go swimming until a week ago...”
(GG)
“…with past relationships I'd come to a point where I just wouldn't want to go any
further but, I don't like, like physical, like too close to see, so you can see like
where my make-up is, my make-up comes off as well, I just start getting panicky
and I always like have to have the lights off…” (AA)
“…Not going for a smear, that’s another example.” (EE)
Most participants reported using concealment, particularly cosmetic camouflage, to some
extent, and described the pressures of reliance upon this:
“…I can't even like answer my door without any make-up on because I just, I
would just have a panic attack… I find it quite pathetic that I can't just go to the
shop, to the door without putting on make-up…part of me wishes I'd never
started wearing make-up because maybe then I wouldn't have to rely on it so
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much…sometimes I just want to because it’s so much effort putting on my make
up…” (AA)
“I would end up feeling really self-conscious and, and nervous and scared and
vulnerable and, it's all because I haven't got make-up on”. (AA)
3b. Confronting and explaining
Some of the participants had developed positive methods of dealing with intrusive reactions, but
such coping mechanisms were not widely evident in the group:
“I would get the occasional like name calls… they're just saying it because
they're scared of stuff that they don't know, because if you just explain it to them
they've got nothing to say…” (AA)
“Control new interaction by informing them beforehand.” (DD)
3c. Overcompensation
For some participants there was a sense of overcompensating or using placation as a means
of mitigating against anticipated rejection:
“…it's really important to me what people think about me and because of that
wanting to prove myself all the time I do go out of my way for other people, even
at work if somebody says can you do this for me I won’t ever say no. It's like
you’ve always got this want in you for people to like you because people have
hated you most or your life or looked down their nose at you…” (GG)
3d. Finding their own way
Some participants spoke of rejecting cultural practices and finding their own way. This was
particularly evident in relation to arranged marriage:
“…in my mind that made me think well what am I going to do and then I decided I
wasn’t going to do it and I was going to go to university instead…because me
and my husband had a love marriage…” (GG)
3e. Denial, wishful thinking and minimizing
Some of the more distressed participants described using a range of emotional coping
strategies likely to exacerbate their adjustment in the long run:
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Denial and wishful thinking
“…there'll be a magic cure and it will be over…” (BB)
“…I feel in denial of it, I just think, I just want to fight it psychologically and not
think about it really…” (BB)
Minimizing emotion
Not disclosing the condition or the individual impact of it to wider family was reported by
several participants as a way of coping, either from the fear of causing worry within the family
or the fear of being stigmatized;
“…I just don't want to worry them because they'll just worry for me and that is the
reason why I haven't told them…” (BB)
4. Social support
Support came from family, friends, The Vitiligo Society, the Internet, and from dermatologists.
4a. Seeing things differently and acceptance
For some, there was acceptance and assistance in generating positive illness
representations:
“…my husband has been brilliant and he just said, it wasn't, you know, it wasn't
your own fault, it's just happened…” (BB)
“…she's [a friend] so understanding, she said, you'll be you no matter what, so
don't think about that because people accept you for what you are and if they
don't accept you for what you are then, are they a true friend and don't worry
about it.” (BB)
“I've got this friend at work and she's amazing…she goes if that were me, if I was
going to meet somebody I'd say you either take me as you are or you leave me.
This is me accept it or lump it, but I can't do that.” (GG)
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For respondents like AA (described earlier), where there had been a lack of social support
and acceptance particularly at a young age, there was a sense of being different. This was
also evident in some other accounts:
“I think it's going right back to my parents never talking about it and being picked
on made to feel the odd one out and even now despite all the colour change and
everything, even despite that I still feel like the odd one out. I haven’t built up
that much confidence in myself that I can actually feel that I belong there and I
don’t, I still don’t now.” (GG)
4b. Medical support
There was a range of experience of medical treatment, particularly in relation to the
availability and access to different treatments:
“…I don’t know but I feel even being a doctor it was difficult for me to get all this
information, nobody gave me this information…My GP is very caring but he
never gave me any information because he didn’t know.” (FF)
5. Living with vitiligo: ongoing burden
In common with previous participants, there was a theme here of the ongoing burden vitiligo
placed on participants in relation to the uncertainty about progression, the reliance on
camouflage and the demand on psychological resources to cope:
“Oh, it, it's horrible, how do I sum it up? It's a burden on me because it's there all
the time…I know there's no cure…although I put creams on every day it's a kind
of chore, it's awful”. (BB)
Feedback from participants and independent member of The Vitiligo Society
The themes were shared with two participants who had requested to see the results and an
independent member of The Vitiligo Society. One of the aims of doing this was to ensure that
the study had meaning for participants and appeared warrantable to them. Additionally,
feedback was sought on the cultural acceptability of the results. Consent was provided to use
the following quotes sent by email.
Only one of the participants responded and commented positively that:
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“I don't think that you have made any misinterpretations whatsoever. It is
paramount I feel to show this as you have done in order to get any future
funding for studies as you show how people really feel about themselves. I
also feel that psychological intervention would definitely be a great benefit to
individuals (single girls especially of Asian origin whose parents 'disown' them
as they literally appear to be outcasted from others!) I feel for them as I feel
had my vitiligo been so wide spread at that time (before coming of age) my
parents who loved me so much would still have worried in taking me out in
public especially if I was to have had an arranged marriage! Some of the girls
in your study would definitely benefit from help in order to make them feel
beautiful and wanted”.
The independent member of The Vitiligo Society commented:
“Being Indian myself, I could really relate to the points mentioned. I have two
additional things to add which were not mentioned. One is the myth that people
have vitiligo because they have eaten fish and drunk milk at the same time. I
hear this time and time again and find it very frustrating - I only hear it from
Indians!! My other thought is that many Indians lack confidence because of the
condition and the stigma attached to it”.
DISCUSSION
This study offers a unique insight into the experiences of South Asian women living with vitiligo
in the UK. A number of themes were identified, several of which have been highlighted in
previous literature, relating to White women living in the UK, in particular the reality of
experiencing intrusive reactions and the high reliance on concealment as a method of coping
(Thompson et al., 2002). Visibility and the importance of appearance were also seen to be key
factors, although there were interesting relationships between these and cultural practices.
Much research has focussed on the psychological impact of disfigurement but has failed to
consider the socio-cultural meaning and context of having a marked appearance, and clearly
here vitiligo is seen as an impediment to social acceptability and the prospect of marriage
(Rozario, 2007).
Goffman (1963) describes the most serious reaction to stigma as the development of the
‘spoiled identity’ in relation to the internalisation of the experience of stigmatisation. Thompson
and Kent (2001) and Thompson (2005) have commented theoretically upon the similarity
between this process and that of becoming shame-prone. For some participants here there was
a deep sense of having a spoiled identity in terms of not only their personal identity but in
relation to their ethnicity.
The findings of this study broadly support the model developed by ARC but suggest the need to
assess cultural associations of disfigurement. Further, they suggest as do the findings from
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study 6, that in addition to individual therapeutic interventions, there may be a need for
community interventions aimed at dispelling myths, and raising awareness of sources of support
and treatment.
However, caution is needed in interpreting and acting on these findings, as the response rate to
this study was very low (3% from the clinic population approached), and the eventual number of
women interviewed was small. Whilst in-depth interviews with small samples can provide
elaborate data of theoretical interest, there can be certainly no claims made about the
generalizability of the findings reported here, and further research is needed. Nonetheless, the
present study is valuable in revealing some specific cultural factors that might influence
adjustment in the British South Asian vitiligo population and additionally in demonstrating the
complex relationship that exists between these cultural issues and other social and
psychological factors, most notably visibility and social support.
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STUDY 8
AN INVESTIGATION OF APPEARANCE-RELATED SOCIAL
COMPARISONS AMONGST INDIVIDUALS WITH VISIBLE
DIFFERENCES.
Study lead: Emma Halliwell and Timothy Moss
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AIMS
The aims of this study were to investigate the impact of different types of social comparisons
made by individuals living with visible differences. Social comparisons are related to adjustment,
so that those with good adjustment report fewer appearance-related comparisons than those
with poor adjustment (Halliwell, 2002). This study aimed to explore the types of comparisons
made by poor and good adjusters in more detail. We planned to examine the outcome of
experimentally induced social comparisons between individuals identified as good or poor
adjusters.
BACKGROUND
It has been argued that social comparisons are a universal and necessary tendency (Festinger,
1954). In view of previous research, it was surprising that the results of study 1 indicated only a
small effect of social comparison processes. These processes did however feature in the
qualitative data derived from interviews with participants in study 3. In view of the emphasis on
appearance specific cognitive processing evident in study 1, it may be that the lack of impact of
social comparison processes is an artefact of the generalised measure used. In view of this
possibility, and in the light of an acknowledgement of the complexities of social comparison
processes by specialist researchers in this area (Halliwell, 2002), this study was designed to
explore appearance specific social comparison processes in more detail. The hypothesis was
that good adjusters are less likely to make appearance-related social comparisons than poor
adjusters. A fuller understanding of the differences between comparison tendencies between
good and poor adjusters will facilitate an enhanced model of intervention consistent with and
building on current best practice.
METHOD
This study was an experimental study conducted via the internet. The study was conducted as
an investigation of perceived social skills. Participants viewed an image of an attractive woman
and listened to an audio-tape of her in conversation. They were then asked to rate the woman’s
social skills. In the first condition they were given no instructions about the specific comparisons
to be made between themselves and the woman. In the second condition they were asked to
rate the woman and themselves in relation to a number of specific domains including
“appearance”, so they were forced to make an appearance-related social comparison.
Participants then completed a measure of state mood and body image. We intended to compare
the content of the comparisons made by “poor” and “good” adjusters (as defined by scores on
the DAS24 in the cross sectional study) in each condition.
Hypotheses
1) In the absence of any instruction about social comparison (condition one), poor adjusters
will report less body satisfaction and more negative mood than good adjusters because
they will have engaged in an appearance-related social comparison with the target.
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2) In the second condition, when an appearance comparison is forced, there will be no
difference between body image and mood reported by poor and good adjusters. All of
the participants will have been forced into upward appearance-related social
comparisons.
Participants
We aimed to recruit a sample of 60 women who had taken part in the initial cross-sectional
study. However, from the women who indicated that they would be happy to be contacted for
follow up, we were only able to invite 40 women to participate. Of these women, 13 completed
the study, 4 in the forced comparison condition and 9 in the no-comparison instruction condition.
RESULTS
Unfortunately, this small sample meant that we did not have enough statistical power to test the
hypotheses about poor versus good adjusters. We did examine whether the social comparison
instruction condition had an impact overall.
There was no statistically significant difference between body satisfaction amongst women who
had been forced to make an appearance-related social comparison (mean = 4.45, SD= 0.99)
and those who had not (mean = 2.98, SD = 1.23), t (11) = .53 (NS). Neither was there a
significant difference between mood reported by those in the forced comparison (mean= 1.23,
SD= 0.50) and those in the no comparison instruction condition (mean = 1.33, SD = 0.50), t(11)
= .56 (NS).
DISCUSSION AND CONCLUSION
The sample recruited to the current study was too small to be able to test our hypotheses. In
order to achieve an appropriate sample we would have needed a 100% response rate, clearly
this was not realistic. Unfortunately, we could not examine our research questions in the current
study. However, as the theoretical links between social comparisons, adjustment to appearance
and body dissatisfaction apply to the population in general we are currently running this study
with undergraduate students. This should be completed by November 2009 and will provide
some evidence relevant to the hypotheses investigated here.
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154

STUDY 9
APPEARANCE CONCERN, HOSTILITY AND SOCIAL
SITUATIONS
Study leads: Timothy Moss, James Byron-Daniel & Eleanor Walsh
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SUMMARY
• Participants (n=38) took part in an online survey comprising 6 social situation vignettes
involving judgements about the consequences of anti-social behavior
• Participants who were less well adjusted to their appearance (DAS24) were more
sensitive to the behaviour of others and likely to be more hostile
• The relationship between appearance-related adjustment and hostility was found to be
mediated by social ranking and narcissism
• The results indicate that interventions should focus on personally sensitive social
situations (appearance-specific threats) rather than generic social skills when seeking to
reduce hostility in people with appearance concerns.
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RATIONALE
Previous work in the field of visible differences has suggested the importance of hostility as an
aspect of psycho-social adjustment (Moss, 1997), and the inclusion of the hostility measure in
the pack of tests in the main study was based on this. Initial analysis of data from the crosssectional
study confirmed potentially important relationships between adjustment to visible
difference/disfigurement and feelings of hostility. The scientific literature on the relationship
between feelings of hostility and people with difference in appearance is under-researched. Due
to our initial findings and the lack of research in this area it was considered appropriate to
attempt to investigate this relationship further.
INTRODUCTION
An examination of the recent psychological literature investigating appearance concern and
hostility has presented a number of relevant psychological constructs that may be related to
aggression/hostility in people with difference in their appearance.
In summary, aggression is a likely outcome in people high in narcissism who are faced with
threatening or challenging feedback in social situations (Kernis, Grannemann and Barclay,
1989). As narcissism is often related to, but not identical to, high self esteem alone, it is not
sufficient for hostility to be demonstrated; it is also necessary to have a poor or low “other”
esteem. According to this formulation, a feeling or sense of superiority could be a precursor to
aggression or hostile behaviour (Baumeister, 1996). It is not yet clear the extent to which this is
stable across all situations or whether it is only specific situations which might elicit hostile
responses in people with a visibly different appearance (e.g. situations in which appearance is
highlighted). Perceived social ranking (Gilbert et al, 2007) may also be important in this
relationship. From this perspective, aggression and hostility may serve to protect a person’s
perceived position in a social ranking system when this is under threat.
It may be the case that narcissism and superiority are defence mechanisms functioning to
protect a more hidden, core view of the self as weak, vulnerable, or damaged. Aggression and
hostility are the manifestation of these defences in the face of threat to the self through
challenges present in the environment (Moss, 1997). It is not difficult to see how this might
occur in people with appearance concerns when in a situation in which appearance becomes
highly salient. In order to investigate these possibilities the following study investigated reactions
of people with differences in appearance to hypothetical situations measuring concepts such as
self-esteem, adjustment to disfigurement and hostility.
METHOD
Participants
Thirty-eight out of 146 potential participants completed the survey (a 26% response rate).
Twenty-five email invitations were rejected, because email addresses were not recognised,
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leaving 82 invitations not responded to or partially completed surveys (one person officially
opted out of taking part). Thirty eight participants took part (female n = 30, male n = 8). All
participants were over 18 years, with a median age within the age band 41-45 years. Most were
married or living with their partner (60.5%) and 39.5 were living alone or with friends and
relatives.
Detailed description of measures
Derriford Appearance Scale-24 (DAS-24)
Developed by Carr, Moss and Harris (2005) the DAS-24 is a 24-item scale used to assess
appearance concern in clinical and research settings (Moss, 2005). Items relate to participants’
behaviours and concerns surrounding an area of their body they are self-conscious about. Items
are scored from ‘not at all’/’never’/’almost never’ (with a non-applicable option) to
‘extremely’/’almost always’. High scores indicate high levels of distress.
Rosenberg Self-esteem scale (RSE)
This is a 10-item scale that measures respondents’ general feeling towards themselves
(Rosenberg, 1965). The items are scored from 4 (‘strongly agree’) to 1 (‘strongly disagree’),
where higher scores denote higher levels of self-esteem.
Adapted Other esteem scale
This is an adapted version by Burkes and Stets (1999). Other esteem relates to how an
individual believes that other people perceive them. Items for the RSE have been adapted to
incorporate this concept. For instance, “I feel I do not have much to be proud of” is rephrased as
“I feel that other people feel I do not have much to be proud of”. Similarly, items on this scale
are scored from 4 (‘strongly agree’) to 1 (‘strongly disagree’), with higher scores indicating
higher esteem perceived from others.
Social Ranking Scale (SRS)
This social comparison scale includes 11 items focusing of respondent judgements of their
social rank, relative attractiveness and group fit (Allan & Gilbert, 1995). Items are arranged on a
scale with bipolar opposites at either end (e.g. Inferior-Superior; Left Out-Accepted). Responses
range from most negative to most positive judgments of the self along the scale (1-10,
respectively). Higher scores represent more favourable comparisons.
Refined Aggression scale
This shortened version of the Aggression questionnaire (Buss & Perry, 1992) comprises four
subscales (physical aggression, verbal aggression, anger and hostility). Items are scored from 1
(‘extremely uncharacteristic of me’) to 5 (‘extremely characteristic of me’), where higher scores
indicate greater aggression.
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Narcissistic Personality Inventory (NPI)
The NPI (Raskin & Terry, 1988) consists of 40 items relating to psychometric properties of
narcissism behaviour and perceptions. The items are scored using a true or false format. Higher
scores indicate more narcissistic characteristics.
Procedure
Participants from the large cross-sectional study, who had given their consent to be contacted
about further research, were sent an email invitation to complete a survey online. This email
provided a link to the survey website, where an information sheet was viewed and informed
consent could be given. Only those participants who gave this consent were able to progress
through the main body of the survey. An online survey website was used to administer the
questionnaire. The online survey was hosted on a secure site, all data was encrypted when
downloaded, and participants each had a unique participant code.
Participants were presented with a series of six social situation vignettes (one at a time),
describing several different social situations where the character (i.e. the participant) was
subject to a form of anti-social behaviour. Participants are required to read each situation and
respond using two rating scales. The first scale required participants to report how much
punishment they would hypothetically administer to the perpetrator(s). The other scale required
participants to rate the extent to which this situation made them feel they had “had a raw deal
out of life”. For example:
You have finished most of what you set out to do, and are about to go home. As
you start heading off, you see a group of four or five men and women in their late
teens. They stare at you as you approach, and then as you pass, make insulting
comments about the way you look.
Two police officers get out of an unmarked car, they have witnessed the whole
thing. One of them moves the youths into a police van, and the other lets you know
that they are trying a new scheme of youth justice, where people on the receiving
end of anti-social behaviour can set an instant fine on those who the police catch in
the act.
What fine would you like to give each of the youths who commented on your looks?
Please choose from the following responses:
No fine £1 -12 £13-24 £25-36 £37-48 £49+
To what extent would this situation make you feel like you have had a raw deal out
of life?
Not at all Strongly agree Disagree Agree Strongly agree Definitely
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The vignettes alternated between describing anti-social behaviour towards the character
because of their appearance and anti-social behaviour that was not due to any personal
characteristic of the individual. The order of which these appeared to the participants was
counter balanced, and the participants were assigned to one version of the survey using
random selection.
After completing the vignettes, participants then completed a number of validated
questionnaires. These measure participants feelings towards their appearance using the
Derriford Appearance scale-24 (DAS-24; Carr, Moss & Harris 2005), general self-esteem
(Rosenberg, 1965), other self-esteem (Burks et al, 1999), Social Ranking Scale (Allan & Gilbert,
1995), Refined Aggression scale (Bryant & Smith, 2001) and the Narcissistic Personality
Inventory (NPI; Raskin & Terry, 1988).
Once participants had completed all six scenarios they were thanked for taking part and
debriefed.
RESULTS AND DISCUSSION
From a preliminary analysis of the results it was found that there was a significant relationship
between scores on the DAS (assessing appearance concern) and hostile feelings after reading
the appearance content specific vignettes but not the non-appearance vignettes. This suggests
those participants more poorly adjusted to their appearance were more sensitive to verbal /
behavioural attacks that were associated with appearance compared to those who were better
adjusted. Those who were poorly adjusted appeared to be much more sensitive, and likely to
be hostile, when appearance becomes part of a given situation. It also appears from the data
that this relationship between adjustment and hostility is mediated by social ranking and
narcissism. In line with early hypotheses about the importance of these constructs in this
context, it appears that those who are negatively adjusted are more likely to react with hostility
to an appearance-related social threat if they rate themselves poorly next to other members of
society and if they have low narcissism.
CONCLUSION
The results highlight the potential need to focus on personally sensitive issues and information
in interventions to help people adjust to a difference in appearance, rather than social skills
training in general, as the latter is oriented to more generic social threats. This study highlights
that those who are less well adjusted to their difference in appearance are more sensitive to
appearance-specific threats and that they are more likely to respond with hostility and anger to
these situations. Results also suggest that levels of narcissism, and how people rank
themselves within the social environment they live in are important in mediating this relationship.
Accordingly further research, and particularly further work focussing on interventions to help
people adjust to differences in appearance, could benefit from focusing on issues around social
ranking and narcissistic beliefs about the self. Within the context of the proposed model, this
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study supports the insertion of aggression as a potential outcome of adjustment to a difference
in appearance.
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162

STUDY 10
DEVELOPING A SCALE TO MEASURE THE IMPACT OF
APPEARANCE CONCERNS ON INTIMATE BEHAVIOURS
Study leads: Elizabeth Jenkinson, Alex Clarke, Tim Moss and Eleanor Walsh
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SUMMARY
• The study involved the construction of a scale to measure intimate behaviours and
validation to establish construct validity.
• The scale was administered to 145 students to validate and piloted on sample of 41 outpatient
clinic attendees along with other standardized scales.
• Scoring profiles were very different for the two populations. 4 items were normally
distributed for the student population and 2 for the clinic sample. None were normally
distributed across the two groups.
• The clinic sample also reported that their intimate behaviour was greatly affected by their
appearance. In contrast, the student sample showed little effect.
• The results showed that the role of appearance concerns in intimacy is a significant
issue for many people with visible differences.
• Good construct and face validity of the scale was established but floor and ceiling effects
in the data suggests further development of this scale is required.
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AIMS
To develop and validate a scale to measure the impact of appearance on engagement in
intimate behaviours for use in clinical settings with patients with visible differences.
BACKGROUND
Anecdotal reports from clinicians and from those affected suggest that a substantial number of
people with visible differences in appearance experience problems in the initial stages of
physical closeness such as touch, hugging or kissing. Surgical intervention and ongoing
treatment can also mean that patients’ personal lives and relationships with partners are
negatively impacted, and research into the psychosocial impact of visible differences highlights
the high levels of social anxiety often experienced (Rumsey and Harcourt 2005).
During the course of this research programme, members of the advisory panel queried why
questions concerning intimate behaviours and sexual relationships were not included in the
questionnaire pack, as they all agreed that this was an important factor in relation to adjustment
to visible difference. The little research that has previously been conducted in this area does
indicate that sexual relationships and intimacy can be affected by appearance concerns. Gamba
and colleagues (1992) found that in patients with head and neck cancer, 74% reported
difficulties with their sexual relationship after surgery. Porter and colleagues (1990) also found
that in patients with vitiligo, the majority reported problems with sexual relationships but also
with behaviours that might lead to intimacy, such as meeting strangers or showing their body to
others. Ramsey and O’Reagan (1988) found patients with psoriasis reported similar anxieties.
Following a review of scales, none were deemed suitable for inclusion in the cross sectional
questionnaire. Although scales for the measurement of sexual satisfaction and sexual behaviour
exist (for overview see Popovic 2005), they tended to neglect the types of more subtle social
behaviours that may initiate sex (for example touching behaviours), which are often reported as
difficult by those with appearance concerns. The research team decided to address this problem
by developing a scale during the course of the programme, which could be used in future
research with this population.
In addition to undertaking the construction of the scale, we sought to assess construct validity,
and also to assess the usefulness of the tool when used as a research measure with the
general population. Previous measures developed primarily for use with clinical populations
have proved valuable and responsive when administered to the general population (e.g.
Derriford Appearance Scales; see Harris & Carr, 2001).
In order to establish the construct validity of the scale (i.e. to establish whether the scale is
measuring the concept it purports to measure) the scale was administered alongside a choice of
psychometrically sound assessments which, based on a literature review, were expected to be
theoretically related to the construct measured by the new intimacy scale.
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METHOD
Participants
Student sample
One-hundred and forty-five students, from UWE and the surrounding area, aged between 18
and 57 years old, completed the questionnaire packs (107 female, 38 male, mean age = 22
years old). Ninety-eight percent identified themselves as being heterosexual and the majority
described themselves as being ‘white British’ (89%). The majority of the sample (60%)
described themselves as being in an “exclusive relationship but not living together”, reflecting
the age and lifestyle of the majority of the respondents.
Clinic sample
Forty-one patients of the Plastic and Reconstructive Surgery department of the Royal Free
Hospital, London, completed the above measures. There was an even split between men and
women (20:21 female-male ratio) aged between 19 and 51 years old (mean = 35 years old).
Eighty percent described themselves as ‘white British’ and the majority identified themselves as
being heterosexual (93%) and “single” (70%). The mean length of time since their last
relationship was 4 months.
Materials
The questions in the scale were drafted by the research team on the basis of research, relevant
scales and data from clinical interventions and further developed through discussions with
members of the advisory panel. The scale aimed to measure a range of intimate behaviours and
was designed to be used in clinical practice or research to gauge the impact of appearance on
engagement in these behaviours.
Example question:
I feel uncomfortable hugging or being physically close to other people because of my
appearance.
Several measures were filled in by participants alongside the new 12 item Intimacy scale (Royal
Free & Centre for Appearance Research Intimacy Scale (RoFCAR)) for validation on a student
sample.
Scales included in pack for the student sample:
• The full Personal Assessment of Intimacy in Relationships scale (PAIR; Olson &
Schaefer, 2000) which assesses emotional, social, sexual, intellectual and
recreational intimacy.
• Emotional/Social loneliness and isolation was measured using the Emotional-
Social Loneliness Inventory (ESLI; Vincenze & Grabosky, 1987).
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• An abbreviated version of the Multidimensional Sexuality Questionnaire (MSQ;
Snell, Fisher & Walters, 1993) assessed 8 out of the 12 original aspects of
human sexuality. These included sexual esteem, anxiety, satisfaction and
assertiveness.
• The ‘Appearance’ subscale of the Body Esteem questionnaire (Mendelson &
White, 1997) which assesses general feelings towards body and appearance.
The clinic sample completed the following scales as part of their routine care, alongside the
intimacy scale:
RESULTS
Students
• Derriford Appearance Scale (DAS-24; Carr, Moss & Harris 2004)
• Hospital Anxiety and Depression Scale (HADS, Zigmond & Snaith 1983)
• Fear of Negative Evaluation scale (FNE; Leary, 1983)
The mean score for the ‘perceived’ subscale of the PAIR was 388.96 (SD = 69.9) out of a
potential 576, which indicates a relatively high perceived intimacy score compared with ranges
indicated by Schaeffer and Olson (2000). This mirrored the ‘expected’ subscale as the mean
score was 344.80 (SD = 22.5) out of a potential 480.
The students’ responses on the ESLI indicated little or no emotional isolation (M= 4.05),
emotional loneliness (M=5.21), social isolation (M = 4.06) or social loneliness (M= 5.19).
The MSQ indicated that the students scored ‘average’ values on sexual esteem (M=11.64,
SD=4.4), fear of sexual relationships (M=11.53, SD=64.9), and sexual assertiveness (M=12.59,
SD=4.33). The students scored low values on sexual depression (M=8.10, SD=64.55) and
anxiety (M=3.72, SD=4.18) and external sexual control (M=3.29, SD=3.34). They scored highly
on sexual satisfaction (M=14.09, SD=4.93) and internal sexual control (M=12.59, SD=4.33).
Scores on the Body Esteem ‘Appearance’ subscale were lower than the average (M=18.72,
SD=7.53) indicating relatively high appearance esteem.
The students scored low on the ROFCAR Intimacy Scale (M=16.09, mean SD=8.57), out of a
potential score of 40, which indicates that their appearance had relatively little impact on
intimacy and sexual behaviour.
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Clinic attendees
On the anxiety subscale of HADS the clinic sample was judged to have mild anxiety issues, with
a mean score of just over the clinical cut-off for anxiety (M=8.73, SD=5.20). On the depression
subscale of this measure the majority of the clinic sample scored below the clinical cut off for
depression (M=6.70, SD=4.86).
However, the DAS-24 scores indicated that the clinic sample were more concerned about their
appearance (M=54.96, SD=5.16) than the norms indicated by Carr, Moss & Harris (2005).
The clinic sample also scored highly on the Fear of Negative Evaluation scale (M=32.52,
SD=8.73) indicating that this sample have high levels of social anxiety.
The clinic sample scored highly on the RoFCAR Scale (M=34.92, SD=12.41), more than double
the mean of the student sample.
Validation Results
Four items from the RoFCAR Intimacy Scale were normally distributed in the student sample:
7. I prefer sex with the light off because it means that my body cannot be seen.
8. I feel that I could face the prospect of someone new seeing what I look like naked.
9. During sex, I use/would use concealing clothing and/or choose positions to hide aspects of
my appearance.
12. I feel comfortable with my appearance in intimate situations.
Two items from the Intimacy Scale were normally distributed in the clinic sample:
1. I feel physically attractive to my partner/potential partners
3. I am reluctant to kiss my partner/potential partner because I feel physically unattractive to
them
Therefore, the analysis shows that none of the items are normally distributed on both of the
samples and that the validation study highlights the differences between these groups. The
clinic sample self reported that their intimate behaviour was greatly affected by their
appearance, showing skewed mean scores at the extreme end of the scale. The student sample
showed the mean scores skewed towards the bottom end of the scale and reported little impact
of their appearance on their intimate behaviours.
DISCUSSION
The results show that the pilot version of the RoFCAR intimacy scale has good construct and
face validity. The scale covers issues that are, in the main, not a problem to young student non-
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patient populations, but in contrast pose significant difficulties for those presenting to surgical
clinics.
Further, this shows that people with visible differences have pronounced and sometimes
debilitating concerns about their appearance which impact on their engagement in intimate
behaviours. Socialising with potential partners and hugging were self-reported as problematic
for a large proportion of this sample of patients seeking surgery. This supports the limited
previous research with condition specific groups (e.g. Porter et al 1990) and is in line with the
high levels of social anxiety experienced by this group. Future research considering the impact
of appearance concerns on intimacy with people with visible differences is required in order to
develop the scale further. The ceiling effects on responses to the questions by the clinic sample
indicate that future versions of the scale need to include more non-sexual intimate behaviours
(e.g. touch, dating, talking to potential partners, exposure of body parts) and their anticipatory
cognitions about performing these behaviours (worry about dating, looking attractive to others).
CONCLUSION
The role of appearance concerns in intimacy and sexual relationships is an under-researched
but important issue to consider when seeking to understand the adjustment of people with
visible differences. Developing a more robust scale would allow the measurement of early
avoidance behaviour and the opportunity to offer appropriate intervention sooner. It would also
provide an important outcome measure for both psychosocial and surgical interventions for
people with appearance-related concerns. This remains a priority for future research in this
area.
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170

STUDY 11
WOMEN WITH LIMB PROSTHESES: EXPERIENCES AND
ADJUSTMENT
Study leads: Rob Newell, Andrew Thompson, Sally Clarke
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SUMMARY
• Semi-structured interviews were conducted with 6 women aged 29 to 67 with limb
prostheses, and analysed using thematic analysis.
• The following themes were identified from participants’ responses: psychological
adaptation; physical adaptation; independence; the role of others; emotional impact and
support; social impact; body image & self image.
• In the main respondents mostly described adaptation to loss or absence of a limb in
positive terms, and rarely described high levels of distress, despite acknowledging the
extent of the task involved in adaptation. There was an emphasis on the need for a
positive mental attitude, involving confronting difficulties and asserting independence
and personhood.
• The attitudes and behaviours of members of the public and social acquaintances were a
source of discomfort to participants. It was also clear that participants spent
considerable time predicting, observing, preparing for and responding to the actual or
assumed reactions of others.
• This is small sample, and so the picture of successful adaptation, whilst encouraging, is
not necessarily the norm, and understanding of the concerns of this group would benefit
from a larger qualitative scale study.
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INTRODUCTION
People with a limb absent from birth or through trauma or disease are subject to significant
challenges as a result, independent of the direct consequences of the original source of their
absent limb. Amongst these are phantom pains and other phantom phenomena (Katz &
Melzack 1990), as well as poorer quality of life and other psychosocial indicators (Demet et al
2003).
Use of prostheses where a limb is absent or lost is an aspect of development or rehabilitation of
physical function. However, surprisingly, little is known about patterns of prosthetic use (Murray
& Fox 2002) or psychological adaptation to the loss or absence of a limb, as research is
generally limited to anecdotal reports and small surveys (Rybarczyk et al 1995). In particular,
there is little examination of the attitudes of the person using the prosthesis or their experiences
of prosthesis use, focusing instead on functional characteristics of the prosthesis and their
putative effects on use (e.g. Millstein et al 1986, Balance et al 1989).
A recent study (Saradjian et al 2007) used interviews to focus on the experiences of 11 male
amputees, and found that participants reported adjustment to reduce their sense of difference
using a positive coping style. However, there is some suggestion from the results that the
experiences of men and women of limb absence and prosthesis use may be different.
Accordingly, the current study aimed to complement the work of Saradjian et al by interviewing
women with experience of limb absence and prosthetic use.
METHOD
79 women with prostheses were approached from the cohort of respondents to the ARC survey
who had agreed to be contacted with regard to further participation. A group of 15 respondents
was initially sought. Ethics approval was sought and granted from the original NRES panel as a
substantial amendment to the original study protocol.
Interviews were conducted using a brief semi-structured interview schedule devised by the
investigators and broadly following the issues covered in Saradjian et al (2007).
Respondents were approached via the post and consent to participate was sought. Participants
were interviewed at a venue of their choice, consent was sought for audiotaping, and the
interviews were taped and transcribed. Data were analysed using thematic analysis and
following the pragmatic approach of Burnard (1991) to organisation of the data.
RESULTS
Six women agreed to participate in the study. Their ages ranged from 29 to 67 years. Four had
lower limb prostheses and two had upper limb prostheses.
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Seven key themes were identified and are reported below. Subthemes are reported where
appropriate. There were clear links between subthemes in different theme headings, and
between different key themes, and these are discussed.
1. Independence
This issue was mentioned by all respondents, often extensively. Respondents viewed
independence both as a number of physical tasks to be carried out and as a state of mind:
‘whether I'm in a wheelchair or whether I'm walking I'll be fairly independent
because I'm quite an independent minded person, so I shall be able to get on
one way or another.’ (Respondent 2)
1a. Doing things for yourself
All respondents regarded this as being very important, and as a desirable and appropriate way
to behave, but also as in some ways inevitable, even in the face of difficulty:
“Well I have a little motto that I live by and it's pain if you do and pain if you don’t”
(Respondent 4)
1b. Role of others
The role of other people crops up repeatedly in these accounts. With regard to independence,
respondents felt that others could either help or hinder them in being independent (although
often quite inadvertently):
1c. Mobility
“I mean she was a lovely lady but she found it difficult not to keep helping me and
I can remember to this day going rigid when she wanted to take my arm to cross
the road, poor lady yeah, and I have difficulty with anybody doing that.”
(Respondent 1)
“Yeah, I ask people at Sainsbury’s to reach things off the top shelf because I
can't reach them and I think that doesn’t matter that I'm short but I wouldn’t want
to ask anybody to help me to do something because I've got an artificial arm”
(Respondent 6)
As might be expected, mobility was more of an issue for respondents with lower limb
prostheses, and also emerges under the theme of physical adaptation (below). Mobility was a
key to independence, and, for this reason, respondents went to considerable lengths to maintain
it.
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1d. Not giving in
The notion of refusing to give in to the possible limitations of loss of a limb was also reported.
“But I'm not willing to be a non person, that is just not going to happen, the
wheelchair is a means of conveying me, just like my legs are, a means of
conveying me so as far as I'm concerned but people do they have, they think oh
that’s it, wheelchair, you can't do this, you can't do that, you can't do the other but
outside of dancing there isn’t anything I can't do basically because I'm
advantaged because I still have a good leg,” (Respondent 2)
2. Psychological adaptation
Coming to terms with loss is commonly described in the literature, particularly in the context of
grief. Whilst respondents occasionally expressed regret (see Emotional Impact, below), their
account of adapting to the limb absence did not carry this sense. On the contrary, limb absence
was seen as a challenge which, whilst not welcome, had to be faced.
2a. Positive mental outlook
Most respondents describe the need for this, although the character of their descriptions was
very varied, from matter-of-fact stoicism, as in this account of difficulties wearing necklaces:
“It doesn’t bother me that much that I can't wear it, I don’t weep every night
thinking oh I want to wear a diamond.” (Respondent 6)
to highly developed statements of an enduring attitude to life:
“Yes if you’ve got barriers up in your head that’s it you will not move, and you will
be that person in that wheelchair and I just can't do it. Get on your leg and get
walking for heavens sake, you’ve got nothing wrong, there's absolutely nothing
wrong with you, there's nothing wrong with me. Like I say the barriers are up in
your head.” (Respondent 4)
2b. Confrontation / Getting on with it
Avoidance of activities was almost always regarded as negative.
“Yeah. I see people at the artificial limb centre that have got less off than me,
they’ve just got the foot off and they're walking around on crutches, oh I need
help, oh I need, oh I've got to have these, I can't wear the leg, it's too painful.
What, pain if you do and pain if you don’t. I can't get my head round that.”
(Respondent 4)
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“I've heard tell that a lot of people that just sit there and you know moan and
groan and things like that and people that just won’t get on with it, some people
can't but I think it's that what's within you ….” (Respondent 3)
2c. Onset/reaction
We asked specifically about the circumstances in which respondents had come to lose a limb.
Several of the respondents had amputations in childhood (in one case almost certainly too
young to have any direct memory). These respondents noted that being so young had helped
them to cope with amputation because they had little to compare it with.
3. Other people
The reactions of others was a specific prompt in our interview schedule, as it is an abiding
feature of research into visible difference since its inception. Respondents spoke of the
reactions of other people to their missing limb and their beliefs about other people’s reactions in
connections with many aspects of the interview, not just in response to this specific question. It
seemed clear that a considerable amount of their time was occupied with consideration of the
reactions, assumed reactions or the predicted reactions of others.
3a. Other people’s behaviours
Typically, these reactions were negative, at least from the point of view of the respondent.
“also in my career, when I've been for interviews, I went for a job interview as an
insurance clerk, collecting insurances and I went into the office for the interview
and the chap just turned round and looked at my legs and said sorry we can't
deal with someone like you.” (Respondent 4)
“I've had people come up to me, not even said hello and said do you go
swimming in your leg and I say no I'd sink like a stone love.” (Respondent 4)
“when I go to the Juniors I've got to walk through some classrooms to get to my
base so there will be so many of them either looking or pointing or saying
something” (Respondent 6).
Members of the public appeared to regard it as acceptable to interact with respondents in ways
which would normally be regarded as impolite, intrusive and harassing. One respondent inferred
from this that it was because having a missing limb meant that they were less of a person:
“Like you're less of a human being as they are,” (Respondent 1)
Respondent 1 did, however, go on to note that: ‘but that’s all in your own head I think, I don’t
think they're thinking that they just think what's the matter with her.’ before going on to give a
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further example of how intrusive and unwelcome people’s reactions could be. In this context,
her interpretation may perhaps be regarded as overgenerous, or as a way of protecting herself
from the negative self image which might arise from the repeated intrusions of others.
It should also be noted that there were positive accounts of the actions of others, although these
were typically people whom the respondent knew well.
3b. Beliefs about other people’s attitudes
Respondent 1’s comments do, however, raise the general issue of the difficulty of distinguishing
between the actual attitudes of the public and one’s own interpretation of their behaviours.
Certainly respondents reported many such interpretations:
“I always wear the artificial limb because I don’t want people to look at me and
think there's the lady with one arm.” (Respondent 6)
“I'd feel self conscious that people would notice whereas maybe they don’t,
normally you wouldn’t get a second glance, people would notice, have a look at
you whereas they wouldn’t normally.” (Respondent 5)
“they're ok with the wheelchair I think but they're much happier when the see me
walking because that is their image of me.” (Respondent 2)
3c. Being / appearing normal
Appearing ‘normal’ to others was mentioned by several respondents, who thus shared the views
of our culture about appropriate ways to present the self. This idea of normality was usually tied
to the idea of concealment and with body image and appearance (see Body Image below).
“Of normality, even though they're not particularly attractive and obviously there's
things that could be done with them and they are uncomfortable sometimes but
outwardly at the first glance people think of you as normal, people often say they
don’t notice I've got an artificial arm until several months, weeks later”
(Respondent 6 [describing rationale for wearing prosthesis])
“…it is just a bit of camouflage, I think that’s the main thing.” (Respondent 5)
“For a good while I didn’t go out, not until I felt that, I wanted to be able to be as
normal as I possibly could” (Respondent 3)
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4. Physical adaptation
From so small a sample, it was surprising that such a considerable range of everyday issues
arose, and the practicalities of prosthesis use were clearly of great salience in the minds of
respondents.
4a. Pain & discomfort
This issue was reported by all respondents with lower limb prostheses, and, whilst a source of
frustration and distress, was regarded as inevitable.
“and it can be painful, and it can rub because it's right into your groin and it's very
uncomfortable, it's not the kind of thing you can kind of forget about like it's at the
back of your mind, it's always there right at the front of your mind” (Respondent
2)
4b. Mobility/access
Issues of mobility affected all aspects of the lives of those with lower limb prostheses.
“Yeah obviously like driving, because it's my left leg that’s amputated I can't feel
the clutch so I feel safer to drive an automatic car where I don’t have to use the
clutch. You know things like climbing up steps an things like that to get on to the
top of the units, you can't feel where your foot is so it's judgement more than
anything because you can't feel it” (Respondent 3)
“Well travel, it's made me very nervous about travel. Simple things like if you fly
these days people rush about and especially if it's Rayanair or something people
are rushing to get to seats and I can't do that” (Respondent 1)
4c. Importance of prosthesis & fitting service
Because of the issues around pain, mobility, function and independence, a well fitting prosthesis
was of great importance. A sympathetic prosthetist was highly valued.
“Aesthetically it was nicer but functionally, practicality no it wasn’t hard wearing
and durable like the rest of me, I need something that I can stand on and know
full well that it's going to be reliable and give as much as I can give it.”
(Respondent 4)
“I'm having a very good relationship with the clinic at Sheffield. I've got a very
short stump and it's something called an abduction so it looks as thought it goes
one way but you actually have to fit the limb the other way and I do dread having
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to change prosthetists because they have to re-learn but I've been with Rose
ever since I came here 7 years and she's just fantastic.” (Respondent 1)
5. Body Image
5a. Being/appearing normal
“It sounds silly doesn’t it, you know you get women that have had mastectomies and
they wear a false boob, it's just so that outward appearances your normal aren’t you,
that’s what everybody wants.” (Respondent 5)
5b. Other people
“so I know really that’s it's a lot more noticeable to me than it is to anybody else
and it's easy to say that you magnify your flaws don’t you but I always tell myself
that it is a bit lumpy and a bit, it doesn’t look completely natural, it doesn’t move,
it's not the best thing, I know in reality that most people aren’t going to notice
that…” (Respondent 5)
“I just wanted to wear something that would cover it and not let people see it”’
(Respondent 3)
5c. Prosthesis as part of body/person
“it's like saying what's it like to wear a bra, it's something you just do and you
don’t notice you're wearing it, you know it's just part of me” (Respondent 6)
“If I name my leg it feels more a part of me, it is mine, it's my leg. Some people
think of a false leg as an entity as an alien being that’s got to be strapped to
them, I don’t. It is my leg it is part of me and that is it. That’s who I am.”
(Respondent 4)
“I can never accept it as me although it's something I have got, otherwise I don’t
walk, I've got to use it every day otherwise I don’t walk and I don’t want not to be
able to walk. But it's still not me” (Respondent 3)
5d. Role in self image
“I've not actually lost who I am because it's just a leg, I am the same person,
intellectually and emotionally I am the same person, I'm not a different person
and to be honest my total image of myself isn’t about whether I can or cannot
walk, so I have an image of myself which isn’t really about just the physicality of it
because that’s just one part” (Respondent 2)
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6. Emotional impact & Emotional support
6a. Friends and family
Friends and family were mentioned as a frequent source of support, and one respondent noted
the importance of people around one in allowing one to be oneself. By contrast, the possibility
that friends and family were over-considerate or ‘mollycoddling’ was seen as negative.
“I had a friend called J particularly, that was quite curious because J was a great
support but actually when I got independent I didn’t want to be supported in that
way anymore so that was quite a difficult time for us in the third year at university,
she was still looking after me, she found it difficult to change.” (Respondent 1)
6b. Religious faith
Religious faith was mentioned by two respondents as a source of emotional support.
6c. Negative emotional impact
Although all respondents maintained a positive attitude in the present, there were times for most
when the impact of loss of a limb was felt negatively, including expressions of loss, regret,
frustration.
“You just sort of get frustrated with yourself sometimes because you know the
theory of how to do things but you can't always put it in to practice.” (Respondent
5)
“There's no other way of describing it, people say oh you get used to it, no you
don’t, I don’t know who tells them that nonsense that you get used to it, it's
having a great big plastic thing shoved on your leg, and it's a great big heavy
plastic thing and you're shuntering it along like Long John Sliver, it's rubbish, it's
rubbish, that’s what it's like.” (Respondent 2)
7. Social impact
Although there was a range of responses, respondents mostly reported that limb absence had
made little or no difference to their social lives. Respondent 5 noted that:
“I'm quite a retiring person, I don’t like people looking at me, I don’t think it's
anything to do with my arm, I just think it's my personality”
All reported having dates and boyfriends, and all either were or had been married.
7a. Intimacy
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We asked respondents specifically about intimate relationships, but responses were not
extensive. Typically, no particular issues were described, and respondents did not seem to
regard the topic as a critical issue. One responded more directly:
“He touches me there, it's not like it's out of bounds or anything, it's no more out
of bounds than any other part of my body.” (Respondent 2)
DISCUSSION
Only a small number of women wished to participate in this element of the study, and it is
doubtful whether the themes identified here are exhaustive. Moreover, it is entirely possible that
the generally positive picture of adjustment presented here is a characteristic only of people
who are willing to engage in detailed discussion of their experiences. Accordingly, broader
recruitment of people from this group would be an important additional study. It would also be
informative to include participants who choose not to wear prosthetic devices.
Regardless of this limitation, the issues raised by respondents during the interviews offer a
detailed impression of their experiences. Respondents generally reported a pattern of
successful adjustment to limb absence, even though they acknowledged both that this was a
process requiring effort and also that it was sometimes punctuated with periods of distress.
Several of the areas reported in Saradjian et al’s (2007) study were confirmed here (e.g. role of
the prosthesis; role of support and social interaction, positive mental attitude). There were also
interesting departures from Saradjian et al. First, not all respondents reported the use of the
prosthesis as a compensatory device in terms of a role in minimising their sense of difference
from others. In one case where the prosthesis was used in this way, the rationale was highly
specific – it was a temporary measure so that others would, on first acquaintance, not see the
respondent solely in terms of their limb absence. Second, although there was some variation,
there were indications that the prosthesis contributed to the person’s body image and sense of
self in a positive way. This was related by one respondent to the idea of acceptance of the self
rather than acceptance of the prosthesis.
The frequent previous finding in visible difference research with regard to the potentially
negative role of other people was repeated here, as was the description of inferences and
predictions about the attitudes and behaviours of others. Confronting obstacles and regarding
them as challenges were identified as important in adaptation.
The accounts by women with prostheses in the current study add to the weight of evidence
regarding the role of active coping strategies in mediating adjustment to visible difference,
particularly in the face of often negative behaviours by members of the public. This in turn
reinforces the importance of promoting both such active coping in people with visible
difference,and education and attitude change in the general public.
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182

STUDY 12
DOES APPEARANCE MATTER IN THE CONTEXT OF
RHEUMATOID ARTHRITIS (RA)?
Study leads: Hayley James, Stanton Newman, Michael Shipley, Abigail Olaleye, Samantha
Moore,
183

SUMMARY
• This study investigates whether a visible hand disfigurement due to RA has an independent
impact on psychological well being.
• 49 RA patients with, and 32 with no visible hand disfigurement completed a booklet of
psychosocial questionnaires
• Those with an observable hand disfigurement scored higher on measures of functional
disability and feelings of stigmatization. They also rate their appearance more negatively
than those with no hand disfigurement. When controlling for functional disability, all
significant differences disappeared.
• Participants with an observable hand disfigurement were 2.62 times more likely to be
clinically depressed than those with no observable hand disfigurement. Conversely those
with no observable hand disfigurement were 1.68 times more likely to be clinically anxious.
• Regression analysis revealed that high ideal appearance discrepancy, low optimism and low
satisfaction with social support predict higher levels of anxiety.
• High functional disability and low optimism predict a majority of the variance in depression.
• Appearance-related social anxiety and avoidance is predicted by age and living status, as
well as objective hand disfigurement and the psychological variables of valence, salience,
functional disability, satisfaction with social support and social acceptance.
• Visible hand disfigurement does not independently affect mood, but may contribute to
feelings of appearance-related social anxiety and avoidance.
• Findings suggest that it is not the observable nature of the hand disfigurement but the visible
disability when moving which may have an effect on feelings of stigmatization and the
participants’ evaluation of their own appearance. Therefore, the outward signs of physical
impairment may be regarded as highly salient.
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INTRODUCTION
Rheumatoid arthritis (RA) is the single greatest cause of disability in the UK (Goff & Barasi,
1999). At present there is no treatment to either cure or prevent the disease, so the main aim is
to reduce its impact on peoples’ lives by limiting symptoms, reducing disability and improving
quality of life (Pollard, Choy & Scott, 2005). Disfigurement of the hands is a common and
significant complication of RA and once these changes occur, they are not reversible medically
and may require surgery.
Despite a large amount of research looking at psychological impact of RA during the course of
the disease, very little research has focused on the psychological effects of body image and
disfigurement. Early research on body image and attractiveness in RA has produced somewhat
mixed results with some suggesting no difference from the normal population (Cornwell &
Schmidt, 1990) and others suggesting negative impacts on body image (Skevington, Blackwell
& Britton, 1987). Rumsey, Clarke & Musa (2002) report higher levels of anxiety and depression
in patients with rheumatic conditions including RA, compared with normative levels, as well as in
comparison to people with burns, head and neck cancer and eye conditions. Those patients
with rheumatic conditions experiencing higher levels of distress spoke of embarrassment, selfconsciousness
and distress in relation to their appearance, with specific mention of the
appearance of their joints. Concerns regarding the noticeability of the condition were also
reported along with the use of avoidant and concealment behaviours. In a study on RA and
lupus patients, Monaghan, Sharpe, Denton, Levy, Schrieber & Sensky (2007) found that
perceived appearance and physical disability were predictive of depression but not anxiety in
RA patients.
Very few studies have focussed on the physical and psychological issues surrounding
observable hand disfigurement in RA, despite this being the most overtly exposed area and the
identification that hands are one of the areas most affected by the illness (Cornwell & Schmidt,
1990). Due to the lack of consistency in the results of previous research into appearance
concerns this study investigates whether observer rated hand disfigurement due to RA has an
independent impact on psychological well being.
METHOD
Participants
49 RA patients with hand disfigurement due to RA rated as visible by the researcher and 32 RA
patients with no observable hand disfigurement were included in the study. The mean age was
58.64 years. Respondents were outpatients attending routine rheumatology clinics at University
College London Hospital. Further demographics details are displayed in Table 12.1.
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Table 12.1 Demographic data by group
Group 1 2
n 48 30
Age M(range) 60(23-85) 56.47(29-78)
Gender female n(%) 42(85.7) 25(78.1)
Marital status Married or living with partner n(%) 32(65.3) 22(68.8)
Living alone n(%) 11(22.4) 5(15.6)
Living with friends or relatives n(%) 4(8.2) 4(12.5)
Nationality British/English n(%) 44(89.8) 24(75)
Ethnicity White n(%) 41(83.7) 25(78.1)
Note: Group 1. Observable hand disfigurement; Group 2. No observable hand disfigurement
Measures
Using a checklist participants were asked to tick those areas of their body about which they felt
most sensitive and to indicate how difficult they felt it was to hide or disguise this area on a
seven point Likert scale ranging from 1 (extremely easy) to 7 (impossible).
Participants completed the following battery of psychosocial measures:
The Hospital Anxiety & Depression Scale (HADS; Zigmond & Snaith, 1983)
Derriford Appearance Scale short form (DAS 24; Moss, Harris & Carr, 2004)
Feelings of social acceptance
Physical Appearance Discrepancy Questionnaire (PADQ)
The Life Orientation Test Revised (LOT-R; Scheier and Carver, 1987)
The Social Networks Scale (Sarason, Levine, Basham & Sarason, 1983)
CARVAL & CARSAL (Rosser, 2008)
The Stanford Health Assessment Questionnaire-II (HAQ-II; Wolfe, Michaud & Pincus, 2004)
– a measure of functional disability
Feelings of Stigmatization questionnaire (FSQ) (Schmid-Ott, Jaeger, Kuensebeck, Ott &
Lamprecht, 1996)
RESULTS
The majority (54%) of participants with an observer rated hand disfigurement considered their
hands to be the main area of concern in terms of appearance. For the non-disfigured group the
area of most concern was the abdomen (22%).
Participant characteristics
An exploration of group characteristics revealed no significant differences in age between those
with and without an observable hand difference and no significant association between gender,
nationality, ethnicity or marital status and allocation to either group.
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Preliminary analysis
Mean, standard deviations and scale ranges for all variables according to group are presented
in Table 12.2. Analysis reveals that those with an observable hand disfigurement experience
higher levels of functional disability, perceived stigmatization, a more negative view of their
appearance and felt they were able to disguise their area of concern more than those with no
observable hand disfigurement.
Table 12.2: Means and standard deviations for all variables by group
Group 1 2
Variable Scale range M (SD) n M(SD) n
Depression 0-21 8.78(3.31) 49 7.97(3.26) 32
Anxiety 0-21 7.55(3.48) 49 7.31(3.94) 32
DAS-24 11-96 33.62(11.89) 48 33.71(14.94) 32
HAQ-II 0-30 1.50(0.81) 47 0.71(0.64) 32
Disguisability 1-7 4.87(1.59) 45 3.69(1.67) 26
Social acceptance 2-14 11.84(2.91) 49 12.13(2.86) 30
Ideal PADQ 4-28 13.88(6.09) 49 12.73(6.53) 30
Should PAQD 4-28 12.96(6.27) 49 11.65(6.63) 31
LOT-R 4-20 14.96(3.03) 48 14.28(2.85) 32
CARVAL 6-36 19.79(6.61) 47 16.28(7.73) 32
CARSAL 7-36 29.20(8.26) 49 29.83(8.09) 30
Perceived Stigma 10-60 24.65(7.69) 48 20.47(8.03) 32
Note. Group 1. Observable hand disfigurement; Group 2. No observable hand disfigurement PADQ:
Physical Appearance Discrepancy Questionnaire; LOT-R: Life Orientation Test Revised; CARVAL:
Centre of Appearance Research Valence; CARSAL: Centre of Appearance Research Salience; DAS-24:
Derriford Appearance Scale-24; HAQ-II: Health Assessment Questionnaire-II.
In order to examine whether the differences observed between the groups were due to
differences in functional disability, analyses were conducted controlling for functional disability
scores. These indicated that there were no significant differences between the two groups on
any of the variables except optimism. However, the difference in mean scores between the
group with a visible hand disfigurement and those with no visible hand disfigurement was also
extremely small on this variable.
Of the 49 RA patients with visible hand disfigurement, 14.3% were clinically anxious and 32.7%
clinically depressed. Of 32 participants with no observable hand disfigurement 21.9% were
clinically anxious and 15.6% clinically depressed. Results suggest that participants with an
observable hand disfigurement were 2.62 times more likely to be clinically depressed than those
with no observable hand disfigurement. Conversely those with no hand differences were 1.68
times more likely to be clinical anxious.
Predictors of anxious mood
The demographic variables and the disfigurement grouping variable failed to make any
significant contribution to the final model. After entry of the remaining variables, 42.7% of the
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variance in anxious mood was accounted for by optimism, ideal discrepancy and satisfaction
with social support (F (9,57) = 6.460, p

e significant. This suggests a close association between stigma, appearance valence and
functional ability.
The lower levels of appearance satisfaction in the disfigured group to some degree reflect the
work of other researchers (Skevington, et al., 1987). But these results contrast with other
studies that have found that body image concerns for RA patients and healthy controls
approximate each other (Cornwell & Schmidt, 1990) or do not differ (Ben-Tovim & Walker,
1995). The variability in these results may reflect the differences in measurement techniques.
A participant with an observable hand disfigurement was almost three times more likely to be
clinically depressed than a participant those with no visible hand differences. This greater
likelihood is noteworthy, but may to be due to the associated differences in functional disability
rather than the disfigurement itself. The percentage of RA patients with no observable hand
disfigurement meeting caseness levels of depression are comparable to levels reported in many
other RA studies (Pincus, et al, 1996; Værøy, et al., 2005). Conversely, those with no
observable hand disfigurement were almost twice as likely to be clinicaly anxious. One may
speculate that this may be associated with the unpredictability of RA. Those who have hand
involvement and resulting disability may feel things can get no worse while those with lower
levels of disability (i.e. no hand involvement) may be anxious about future deterioration. Those
with no visible hand disfigurement exhibited either lower or comparable levels of clinical anxiety
to that reported in other studies (Söderlin, et al., 2000; El-Miedany & El-Rasheed, 2002).
RA patients with high levels of ideal discrepancy, low optimism and lower satisfaction with social
support had higher levels of anxious mood. Optimism was the most significant independent
predictor of anxiety and the same variable was found to be the best predictor of depression. The
significant contribution of satisfaction with social support to anxiety highlights the need for
quality social networks which provide the resources necessary for successful adaptation. This
has been demonstrated in research for both recently diagnosed and long term RA sufferers
(Evers, Kraaimaat, Geenen & Bijlsma, 1997).
In common with other studies, the multivariate analysis demonstrated that, as well as lower
levels of optimism, higher levels of functional disability were also predictive of depressed mood.
Wright, Parker, Smarr, Schoenfeld-Smith, Buckelew, Slaughter Johnson, and Hewett (2005)
found that a high degree of physical disability was one of the 3 best predictors of depression in
RA. Persons with a high degree of disability meet more obstacles in everyday life and are more
likely to be forced to give up valued activities. In addition, Katz and Yelin (1995) have shown
that the loss of valued activities is strongly associated with the development of depression in
RA. This contributed to the suggestion that functional disability is a risk factor for depression.
This may be due to feelings of isolation which may occur due to the subsequent restriction in
social activities.
The multivariate analysis of social anxiety and avoidance showed a number of the variables
studied to be significant. Notably, participants of a younger age were more likely to avoid and be
anxious about social situations, confirming the relatively higher importance attached to
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appearance of younger people (Harris & Carr, 2001). Not surprisingly those with higher
appearance-related salience and valence also engaged in greater social avoidance. Lower
levels of satisfaction with social support and lower levels of acceptance, along with greater
functional disability, were other predictors. Group differences did not significantly contribute to
the explanation of variance in social anxiety and avoidance when it was initially introduced into
the equation, although it did gain significance in the later stages of the analyses; this may
however, be a statistical artefact.
There are number of limitations which need to be recognised when interpreting these data.
Generalization of these findings to the RA population is limited both by the modest sample size
and by the potential selectivity bias as only those well enough to attend an outpatient clinic were
included. Due to the cross sectional nature of the study it is not possible to draw conclusions
about the direction of the causality. Further comprehensive longitudinal studies with adequate
power and therefore greater sample sizes are required to further understand these
relationships.
CONCLUSION
The findings suggest that in the presence of a disabling condition such as RA, an objective
judgement of visible hand disfigurement does not independently predict mood, but may
contribute to feelings of appearance-related social anxiety and avoidance. Conversely,
subjective judgements of appearance play an integral role in anxiety (HADS) and appearancerelated
anxiety and avoidance (DAS 24). It is not the observable nature of the hand
disfigurement, but the resultant functional disability and possible visibility of this disability (in not
being able to complete tasks, for example) which has an effect on feelings of stigmatization and
the evaluation of their own appearance. This suggests that disfigurement is not necessarily just
about how a person looks in terms of their body, skin or facial features, but encompasses how a
person appears as a whole, particularly when they move. Signs of physical impairment may be
considered as a highly salient form of visible difference.
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STUDY 13
WORKING WITH PATIENTS WITH VISIBLE DIFFERENCES:
GENERAL PRACTITIONERS’ BELIEFS, DECISION MAKING
PROCESSES AND TRAINING NEEDS.
Study leads: Elizabeth Jenkinson and Tim Moss
191

SUMMARY
• This study is recruiting UK based General Practitioners (target n=30) to complete a
questionnaire incorporating questions about previous training and understanding in the
field and vignettes about hypothetical patients
• Vignettes include systematic variations in variables representing severity and visibility of
the hypothetical patient’s condition and levels of psychosocial distress.
• Data collection is still in progress (n=21 completed returned questionnaires to date) and
is expected to be completed in October 2009.
• Data will be analysed using hierarchical stepwise regression analyses to ascertain which
cues GP’s rely on in their decision making regarding referral to medical, psychological
and lay led services.
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AIMS
To investigate general practitioners’ beliefs and assumptions about which factors mediate and
moderate adjustment to disfiguring conditions
To investigate the factors which general practitioners use as cues in decision making
regarding referral to psychological services
To identify the training needs of general practitioners who work with patients with visible
differences and to make recommendations for future training
BACKGROUND
GPs have been identified as ‘gatekeepers’ to existing psychological support services by
psychologists working in the field of appearance (Rumsey and Harcourt 2005). Despite their
pivotal role, GPs are not routinely trained in dealing with the psychosocial needs of those with
appearance concerns and may find it hard to identify appearance-related distress from other
health concerns or mental illness. When appearance issues are acknowledged, Hopwood and
Maguire (1988) suggest that those working with these patients often underestimate the
problems of adjusting to their appearance. This may be due to an over-reliance on the
biomedical approach to the assessment of patient adjustment. A growing evidence base of
psychological research suggests biomedical factors such visibility, severity and type of condition
are, in fact, not reliable predictors of psychological adjustment (Robinson 1997, Rumsey,
Clarke, White and Hooper 2003), and advocates adopting a more biopsychosocial approach
(Engel 1980) which considers psychological factors alongside physical assessment.
Charlton, Rumsey, Partridge, Barlow and Saul (2003) suggested that efforts should be made to
enable GPs to appropriately identify and advise patients with concerns about their appearance
and noted that more support and training is needed in this area. The authors considered that
consultations with patients presenting with appearance issues present a quandary for GPs. The
decision to refer for surgical intervention may not always be appropriate. Furthermore the
expectations of patients that their visible difference will be aesthetically improved through
surgery may be raised and lead patients to believe feelings of self-consciousness about their
appearance may be cured. However referral for surgical or medical treatment may be the only
option, as the alternative of offering psychological support may not be feasible where services
are not in the locality or in cases in which patients are not willing to engage with psychological
input. Charlton and colleagues argue that more research is needed at primary care level to
gauge current levels of GP knowledge or training in working with people with disfiguring
conditions, and to inform education for practitioners.
Therefore, the focus of this research is to understand the existing perceptions, beliefs and
referral patterns of GPs in relation to working with patients with disfigurements, and recognises
that this understanding is key to designing adequate training packages.
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METHOD
Participants
GPs from across the UK who come into contact with patients with a wide range of appearance
concerns and visible differences, are currently being sought (n=30) and recruited via
advertisements and word of mouth.
All participants are required to be either a GP or GP in training currently working in primary care,
able to converse in English, and able to undertake the questionnaire without supervision. All
GPs who expressed interest in the research and fitted the eligibility criteria are being invited to
take part.
Participants can access information about the study by logging onto a site hosted by the UWE
network, or by requesting a pack including an information sheet and consent form directly from
the researcher via email, post or telephone.
Design
A mixed methodological approach is being adopted. Previous research in related areas of
health psychology and decision making suggests that the levels of self-insight health care
professionals have into which factors or ‘cues’ they use when making decisions about patient
care often does not mirror the way these cues are actually used in practice (Harris, Evans and
Dennis 2000). Therefore vignettes are being used to increase ecological validity, in addition to a
series of open ended and closed ended questions.
Materials
The final questionnaire was designed by the researcher in two parts; firstly questions designed
to gather information about participants’ current role and experience of working with patients
with visible differences and secondly a series of 12 randomised experimental vignettes
designed to extrapolate those cues used by respondents to make decisions about referral
pathways. The questionnaire is presented with a consent form, information sheet and reply
envelope.
The vignettes were designed by the research team and detail hypothetical patients and
scenarios. These vignettes included information about the age, gender, condition, severity and
visibility of the patients’ condition as well as painting a picture of their current levels of
psychological distress. A number of variables were also kept constant across vignettes,
including socioeconomic status, sex, age (30-50), relationship status, and living arrangements.
As data from the cross sectional study suggest greater numbers of visible differences acquired
during the life course compared with those evident at birth, all actors in the scenarios had
acquired their visible differences. All scenarios were also between 95-100 words long.
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Example Vignette
Sarah, 32 lives locally in a flat with her husband, Nick. She works at a local university as a HR
manager. A recent stroke has left the left side of her face in paralysis. Over the last few months,
she has been tired every day and more on edge than usual. She feels ‘jumpy’ when on her own
and has been feeling anxious even thinking about going to work. She has been staying at home
whenever possible and trying to wear her hair so it covers the affected side of her face in order
to conceal it from others.
Participants are asked to decide whether they would identify these patients as needing further
psychosocial support and whether they would refer them on to secondary or tertiary services.
Following coding, the factors or ‘cues’ provided within the vignettes are designed to be suitable
for inclusion in regression analyses to ascertain which cues are more likely to result in a referral
to psychological services.
Procedure
Participants receive the same questionnaire pack via post or face to face from the researcher
and questionnaires are taken for participants to complete in their own time. These are then
posted back directly to the researcher in a freepost envelope, along with the consent form.
Data collection is still in progress (n=21 completed returned questionnaires) and is expected to
be completed in September 2009.
Data will be analysed using hierarchical stepwise regression analyses to ascertain which cues
GPs rely on in their decision making regarding referral to medical, psychological and lay led
services.
Ethics
Ethical approval was granted by the University of the West of England.
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196

OVERALL SYNTHESIS OF RESULTS
197

The results of each study have been discussed throughout this report. In the synthesis which
follows, the main findings of the research programme are highlighted. The follow-on Studies (5-
13) are in the main, small scale and exploratory. In view of this, the findings derived from these
studies were explored in less depth in the report, and at this stage should be taken as
suggestive rather than indicative. Nevertheless, many of the findings resonate with the results
of Studies 1-4. In particular, they highlight the range and complexity of individual experiences
and are helpful in formulating recommendations relating both to interventions and future
research agendas. Where appropriate, the findings from the follow-on studies are integrated
with the results of the earlier studies in the section that follows.
Profiles of adjustment and distress
The participants in this programme of research demonstrated very variable profiles of
adjustment and distress. In line with previous research, participants in study 1 showed
significant levels of distress, with 51.7% participants with scores above the clinical cut off for
anxiety and 23.6% for depression. The results also revealed considerable information about the
characteristics of those with disfiguring conditions who can be considered to be well adjusted
(Studies 1, 4, 5) Difficulties and distress, which were often extensive, were experienced by
those sampled through out-patient clinics, and from the community. It is clear that the
populations of both those actively seeking treatment, and those who are not contain within them
significant proportions of those with often debilitating levels of unmet psychosocial need.
Adjustment is multi-factorial (all Studies). Some contributory components identified or suggested
in previous research were confirmed and clarified, including dispositional style
(optimism/pessimism) (Studies 1, 4,) and cognitive processes such as levels of satisfaction with
social support (Studies 1, 3, 4, 5 & 11), fear of negative evaluation (Studies 1, 4) and perceived
social acceptance (Studies 1 & 4). The interpretation of the responses of others has been
highlighted as a crucial factor in adjustment in previous research, and is also a recurring feature
of the results of this programme (Studies 2 & 11).
One of the most striking findings of this research is the role played by appearance-specific
cognitions, including salience, valence and appearance-related self discrepancies (Studies 1, 3,
4). The role of some factors in adjustment to disfigurement, hitherto neglected in research, have
also been highlighted, including aggression in response to appearance-related threats (Studies
1 & 9), and the role of functional disability and the desire to function independently (Studies 11
& 12). These appearance-specific issues may cause distress in the absence of other more
general signs of psychological need (for example, anxiety or depression) (Studies 1, 4, 9, 10),
but nevertheless impact negatively on many aspects of the lives of those affected. In those
without obvious signs of general psychopathology, the existence of appearance-related distress
may be less obvious to clinicians and others involved in their care. However, unhelpful
appearance-specific cognitions and behaviours are likely to be amenable to intervention, and
these are urgently needed to improve the quality of life of people with significant levels of
distress.
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The specific nature of appearance-related cognitions and distress also highlights the need to
continue to develop appearance-specific measures with relevance to people with disfigurement.
At present, the CARSAL (salience), CARVAL (valence) and the Derriford Appearance Scales
measuring social anxiety and social avoidance are the only ones in existence which are
applicable to people with a wide range of disfiguring conditions. The CARSAL & CARVAL are
still under development and the DAS is rarely used in screening and assessment of people with
disfiguring conditions as a matter of routine. Researchers from CAR and The Royal Free
Hospital, Hampstead will continue to develop the intimacy measure reported in Study 10. The
research community is encouraged to consider the development of further scales tapping
relevant constructs, including appearance self-efficacy, and culturally sensitive measures of
adjustment and distress.
Others factors and processes produced contradictory findings within this programme and are in
need further research, including the issue of the visibility of a disfigurement to others (Studies 1,
3),and social comparison processes (Studies 1 & 8). The nature of longitudinal research of
adjustment over time (Study 3) also needs to be examined further, across a longer period than
was possible in the current study.
Positive adjustment and resilience
The impact of cognitive processes such as dispositional style and appearance-related
cognitions were particularly apparent in those who self reported as positive adjusters. These
people talked of the experience of disfigurement as one of personal growth (Studies 5 & 11) and
reported a number of strategies that appeared to work well including pragmatism and ‘getting on
with it’ in the face of challenges (Studies 5 & 11), acceptance and determination (Study 2), and
engaging with problems and difficulties rather than avoiding them (Studies 3, 5 & 7).
In the longitudinal study (Study 4), there was a striking lack of concordance between self
classification as a positive adjuster (stable or improved over time) and the scores on
standardised measures, which did not necessarily paint the same picture of positive adjustment.
Once more, the crucial importance of taking into account each person’s subjective beliefs and
assessment about their level of adjustment is highlighted. It is not sufficient, and may even be
misleading, to rely solely on standardised measures in this regard.
The impact of appearance-related distress
The impact of appearance-related distress on a wide range of daily activities is striking. These
include negative effects on cognitions about the self, social functioning and intimate
relationships (Studies 1, 2, 3, 4, 6, 7 & 10).
The multiple nature of appearance concerns
Distress relating to appearance can relate to many different aspects of the body (Studies 1 & 2).
Some participants focussed their concerns clearly and exclusively on their disfigurement.
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Others expressed dissatisfaction with additional issues including weight, shape, and the effects
of ageing on appearance. In some cases these latter concerns caused more distress than the
disfigurement. Interestingly, the consequences for the individual of concerns about aspects of
appearance which are not normally considered to be disfigurements (such as body shape and
size and the effects of ageing) appeared to be strikingly similar to the distress caused by
disfigurement (Studies 1, 2). The findings stress the need for a comprehensive assessment of
each of the sources of appearance-related distress in those affected, and a need to tailor
intervention appropriately. There would be little point in focussing a surgical or psychological
intervention on the aspect of appearance affected by a disfigurement, when, in fact, the person
is equally or more stressed by other aspects of their looks.
More research is needed to unpick further the similarities and differences in the impact of
concerns about weight, shape and ageing in comparison with the consequences of
disfigurement. However, the findings add credence to the legitimacy of considering the
appearance concerns of those with and without disfigurements as comprising one continuum.
In efforts to increase public education and understanding of the consequences of disfigurement,
this may be a fruitful way of ‘normalising’ the distress experienced by those affected,
The dynamic nature of adjustment
In contrast to the rather static picture of adjustment and distress painted by previous,
predominantly cross sectional research, and the widely held assumption that time is a greater
healer in relation to adjustment to disfigurement, this programme of research has also brought
into sharp relief the dynamic nature of adjustment over time. Fluctuations in the salience and
impact of appearance concerns are triggered by a variety of events and changes, including life
events, developmental milestones, signs of ageing, and the cumulative impact of daily life
stessors such as the reactions of others (Studies 2 & 4). Even when adjustment is positive over
long periods of time, coping with a visible difference can be an ongoing strain on resources
(Studies 2 & 11), and at times of particular stress and change may be an ‘Achilles heel’,
becoming the focus of distress. This research (Studies 1 & 3) suggests that many factors
predicting adjustment at a single point in time also account for a significant proportion of change
in reported distress over time. This offers further support for the likely utility of an intervention
focusing around these factors.
These findings are a strong endorsement of the need for regular screening and easy access to
appropriate intervention at all life stages for those with congenital disfigurements, and at all
stages of rehabilitation following later onset.
The Impact of Age, Gender & Ethnicity
The principal focus of this research programme has been on those psychological factors and
processes which are amenable to change. However, the data from the cross-sectional and
longitudinal studies offer findings which contradict some widely held assumptions about the
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impact of some demographic factors, including age and gender. In the next phase of analyses,
we will also examine the effects of socio-economic status, using postcode information.
The span of ages of the participants was large (18-91 years) (Studies 1, 2, 3, 4). There were
overall decreases in levels of distress with age, but individual variation was considerable, and
large numbers of older people were distressed about their appearance.
In line with previous research, levels of appearance-related distress were higher in women, but
in this research programme differences between men and women were small, and many men
had significant and in some cases, debilitating concerns about their appearance. (Studies
1,2,3,4). Study 9 illustrated that men and women may respond differently to appearance-specific
threats in social situations, with men more prone to responses underpinned by aggression and
hostility.
Although someone’s ethnic origin is to all intents and purposes ‘fixed’ and therefore not
amenable to change, the influence of cultural and religious beliefs was a focus within this
research programme, as this is an area which has been under-researched in the past. The
under representation of people from BMEs in treatment settings has been remarked upon by
researchers from this collaboration in the past, and there has been concern that treatment has
been perceived as either irrelevant or inappropriate for their needs. Within the ethnic groupings
included in Studies 6 & 7, there was evidence of the strong influence on the beliefs, attitudes
and personal experience of people with disfigurement resulting from cultural and religious
beliefs. These results indicate a need for support for members of ethnic groups who have
disfigurements (Studies 6 & 7), and also for educational initiatives to dispel myths and promote
positive adjustment in those affected within ethnic communities (Studies 6 & 7).
A Framework of Adjustment to Disfigurement
The advantages and drawbacks of diagrammatic representations of adjustment and distress in
relation to disfigurement have been discussed earlier in this report (including for example, the
acknowledged difficulty of designating psychological variables as ‘process’ or ‘outcome’,) and
have been a source of considerable debate within the collaboration. Having used diagrams
earlier in this report to illustrate aspects of the methodology and the analyses (Figures 1, 2 and
10), it was considered prudent to further modify these in the light of the results of the overall
programme. Consumers of research findings have a penchant for reproducing diagrams of
complex processes such as these, often without the associated health warnings about the
illusion of simplicity implied by boxes and lines. Figure 12 is an attempt to highlight the iterative
process of adjustment and the need to represent the dynamic and fluctuating nature of
wellbeing and distress. This diagram is not intended to be definitive, but hopefully goes some
way to capturing the complexities of the processes involved, and may be more useful as an
heuristic for those unfamiliar with the field than the Figures appearing earlier in this report.
PREDISPOSING
FACTORS
INTERVENING COGNITIVE
PROCESSES
OUTCOMES
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Age
Gender
Ethnicity
Relationship status
Parental influence*
Peer influence*
Treatment history
Visibility to others
Societal and media
influence*
Dispositional
Style
Optimism / Pessimism
Socio-cognitive processing
Satisfaction with social support
Fear of Negative Evaluation
Social Acceptance
Appearance
Specific cognitions
Social comparison
Salience
Valence
Appearance discrepancy
Subjective visibility (self report
disguise, noticeability)
Social Anxiety
Social avoidance
Anxiety
Depression
Mood
Aggression
Shame/ Inadequacy*
Intimacy
Figure 12: Resulting proposed framework for understanding adjustment to appearance based on
research programme
* Note: These components of the framework were not included in the cross sectional study but have been
highlighted in previous research and in studies 5 and 6.
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THE INTERVENTION STRAND
Lead: Alex Clarke
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Whilst the main thrust of this research programme was one of further exploration and enquiry
about the predictors of good outcome in disfigurement, the collaboration were committed to a
concurrent strand focussed on developing intervention pathways to meet the needs of those
affected. This strand of work ran as a ‘wedge’ of activity, with increasing efforts as the results of
the research became available. During the first 18 months of the project, existing interventions
were reviewed. These included social skills programmes (Robinson et al, 1996), individual
interventions (Kleve et al, 2002), the use of patient information (Newell & Clarke, 2000) and
education packages delivered both to health professionals (Clarke and Cooper, 2001) and
teachers (Frances 2003). Recourse was also made to a report on the provision of information
for people with disfigurements, funded by The Healing Foundation and carried out by the Picker
Institute, and two systematic reviews of the evidence base for interventions with adults (Bessell
& Moss, 2007) and Jenkinson, Moss, Byron-Daniel and Naqvi (unpublished, in preparation).
The intervention strand of the project also staged a workshop for 17 experts in the area held
during the first year of the project. The aims of this workshop were, firstly, to reach a consensus
view of the ‘state of the art’ (i.e. what we currently know, and do not know) in relation to
interventions for people with disfigurements, and, secondly, to plan the way forward for the
intervention elements of The Healing Foundation Research Programme. Both aims were
achieved. The consensus concerning the way forward was to focus on the development of a
manual for psychosocial specialists. This would be used as a basis for recommendations for a
subsequent programme of work. As planned, the activity relating to the interventions strand of
the project escalated during 2007 and 2008 culminating in the manual included in Appendix 11
Systematic reviews of interventions (Bessell et al, 2008; Jenkinson et al, in preparation) have
indicated that more research is needed, but also that cognitive-behavioural and social
interaction skills training approaches show promise. The results of this programme of research
indicate that a cognitive behavior therapy (CBT) approach to intervention, which focuses on
facilitating those with a visible difference to identify and work on their appearance-related
cognitive processing, is supported by the findings of this research programme, although it is
recognized that social skills training (SST) can provide a potentially useful model for lower
intensity intervention, and in cases where social functioning is a particular focus.
.
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THE IMPLICATION OF THE HEALING FOUNDATION STUDY FOR THE PROVISION OF
INTERVENTIONS
The key findings of this research programme stress the role of appearance related cognitions
and beliefs in predicting adjustment to disfiguring conditions (studies 1-4, 5, 8-12). The headline
findings include the high level of unmet need in both community and hospital settings (studies 1-
4, 6, 7, 10, 12). Results from follow-on studies illustrate the challenges for people from ethnic
minorities (studies 6, 7) for whom we have had up until now very little information. The central
impact of disfigurement for people from ethnic minorities is similar to other groups: the fear of
the reaction of other people and the judgements they will make impact on self concept and
promote isolation from the very social activities and networks that we now understand to be
protective. For others, particularly those with a less well defined self concept, the perception that
others judge them negatively leads to an aggressive response which is again counter productive
in facilitating social inclusion (study 9).
We understand more about the day to day ‘work’ of having an appearance concern. Lansdown
et al (1996) described this as an ‘Achilles heel’ and it is clear that in meeting the challenges and
demands of everyday life as we all do, excess stress often manifests itself as renewed
preoccupation with appearance for those who perceive themselves to be disfigured. This finding
fits with the clinical observation that people often seek surgery or physical solutions at times
when they feel most vulnerable and are at risk of making poor decisions.
Dissatisfaction with appearance may not be confined to one area (studies 1-4, 12). In
understanding its impact, it is clear that for some people there are multiple concerns about
appearance or that a visible difference has an impact because of its interaction with weight
problems or with ageing or other aspects of appearance. Nor is appearance concern the
perogative of the young; many older people continue to be concerned with the impact their
appearance has on the way in which other people perceive them.
The visibility of a disfigurement has produced some interesting findings (studies 1, 3, 10),
suggesting that in the same way that social interaction can be difficult because of the fear of
others reactions to a visible disfigurement (e.g. on the face), similar problems arise when
conditions are not normally visible, because of the fear of disclosure during intimate settings.
Both responses are connected to the concern people have to avoid negative evaluation, with the
fear of negative evaluation acting to reinforce the negative appraisal of appearance in those for
whom appearance has a high premium. Once this view of the world is established, it is selfreinforcing
through the selective attention to and negative appraisal of the information that
sustains it.
An important positive aspect of these findings is that appearance cognitions are amenable to
change. CBT approaches target the beliefs and behaviours that maintain a maladaptive schema
and promote continued preoccupation with appearance. Using the techniques which have such
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a strong evidence base in other areas of psychological treatment, we can work with individuals
and groups to develop new, sustainable and positive appearance schemas which will facilitate
social interaction and inclusion and promote positive adjustment.
The high levels of individual variation that have been evident in earlier studies of appearance are
clear in this study too (studies 1-4, 5, 8, 10-12). Thus we have needed to develop a tool which
allows us to choose from a range of interventions and packages of support. Whilst one person
may benefit from a detailed psychological input, many others respond to less intensive
measures. Indeed there is evidence for brief solution focussed approaches which focus on
managing staring and comments from others (Clarke, 1999).
The intervention manual has therefore been designed both to provide an informative evidence
based background to the area, and to describe a range of methods and approaches to
managing appearance concerns. In common with the stepped approaches used in the delivery
of clinical care in other conditions, we have devised a stepped care model for the management
of appearance.
A stepped care approach to psychosocial intervention
Informed by the results of The Healing Foundation study, the manual provides the theoretical
basis on which to plan intervention, together with an outline of the approaches that have been
used so far in disfigurement and in associated problems of appearance anxiety and social
phobia. Clinical examples are used to illustrate the range of problems that people encounter.
Stepped care models, now routine practice in cancer care, provide an approach which facilitates
the psychosocial care of patients by providing a role for everyone in the care team. Level one
intervention refers to the provision of a sympathetic and caring environment in which people are
treated with dignity and respect, encouraged to ask questions and provided with relevant
information. Whilst all team members are involved at this level, more complex interventions
(level 4) would be delivered by specialists with additional training. A similar approach is
illustrated by the PLISSIT model in sexual health, used here because it offers the advantage of
an acronym which aids recall.
The PLISSIT model (Annon, 1974):
1. Permission
2. Limited Information
3. Specific Suggestions
4. Intensive Treatment
Level 1: Permission
The first level – permission – is a particularly important concept. Observers often worry about
whether it is appropriate or not to address issues relating to appearance. The model provides a
framework in which a direct approach is encouraged. Permission also applies to both sides of
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the interaction, with both patients and health professionals encouraged to ask questions about
psychosocial issues.
We have recommended that all patients should develop a response to answering questions
about their appearance which manages curiosity by providing a minimal amount of information
(Coughlan & Clarke 2002; Rumsey et al 2002). In practice, this means that all practitioners,
including GPs, are responsible for raising questions about appearance.
Level one training can be delivered as part of a simple study day or via written information
available to health professionals. However, it is also essential that pathways are in place for
referral where it is evident that people are having significant problems in addressing some of
these issues.
Level Two: Limited Information
If people are to ask about appearance then they must have an idea about how to manage the
responses they get. Perhaps the biggest barrier to asking about emotional reactions is the lack
of training to deal with the response or lack of access to someone else who can help.
Resources such as details of support organisations or website addresses provide a Limited
Information response. Changing Faces leaflets or other resources produced to specifically
address the area of visible difference and appearance concerns can also be provided via a
patient library or via the book prescription scheme. As a basic minimum, anyone who has an
unusual facial appearance should be encouraged to have an answer to the question:
• “What happened to your face?”
Chapter 5 of the manual provides details of examples of how this might be managed, but the
goal is to try to elicit a response from the individual which is personal to them and fits within their
usual interpersonal style – rather than to provide a “stock answer”.
It would be reasonable, after minimal training, for health professionals to deliver the first two
levels of this stepped approach.
Level Three: Specific Suggestions
At this level of intervention, the health professional is providing more guided help towards a
specific problem. This has been framed as a ‘target stressors’ approach – building strategies for
managing commonly reported problems. This is the approach used by Changing Faces in their
direct work with patients and through the use of their information resources.
As a minimum this would require an assessment and identification of the goals for change (see
Goal Setting; Chapter 4), the design of a strategy to achieve this goal, monitoring of
effectiveness and a further assessment to evaluate the outcome. The section on social skills
training gives examples of working in this way (Chapter 5).
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Nurses in a counseling role, clinical nurse specialists, occupational therapists and maxillofacial
technicians frequently find themselves in a setting where they spend time with patients as part
of their physical treatment. They are ideally placed to deliver a psychosocial intervention at this
third level of the PLISSIT model. The training days for health professionals at Changing Faces
have included this tier for health professionals working in head and neck cancer. Ideally,
supervision from expert staff such as psychologists should be available.
Computer-based interventions such as FaceIT, developed by Bessell and colleagues, are a
recent addition to psychological treatment and the evaluation of this approach indicates that it is
extremely effective (Bessell et al, 2008). FaceIT could be part of an intervention provided by a
non-psychologist, but has been evaluated as part of package where it is supervised rather than
standing alone. It could also be a very useful addition or first step to an intensive treatment
offered by a psychologist or person with a recognised training in CBT. It offers the enormous
advantage that the intervention can be completed remotely.
Level Four: Intensive Treatment
This final level of intervention relies on specialised training in psychological therapy. The CBT
model outlined in Chapter 6 should be delivered by someone with a relevant qualification in
psychology or training in CBT.
This stepped care model suggests that a non-specialist can provide the first three levels of
intervention to include behavioural approaches to managing problems of visible difference. They
must be provided with additional training; resources and clinical governance arrangements
should be in place to ensure supervised practice. This level of intervention can be effective
when there is:
• Good agreement between objective and subjective assessment of visibility
• Clear evidence of intrusion from other people with concrete examples
• Inadequate social skills, particularly poor eye contact
• Visible safety behaviours – baggy clothes, hats and camouflage, unkempt appearance
• Inability to deal comfortably with staring and questions about appearance
• Preoccupation with appearance is situation specific rather than constant
An intensive intervention provided by a psychologist or other specialist is more appropriate
when there is:
• A mismatch between subjective and objective visibility of appearance
• Multiple appearance-related concerns
• Past history of or current body image concerns
• External shame is assumed in the absence of concrete examples (“no-one actually says
anything but I know what they are thinking”)
• High frequency of checking particularly in the form of reassurance elicited from other people
• Safety behaviours are more internalised
• Preoccupation with appearance is continuous
• High levels of anticipatory anxiety and post event analysis
208

Level of
intervention
Level 1 Permission
Level 2
Level 3
Level 4
Description Example of intervention
Limited
information
Specific
suggestions
Intensive
treatments
Sensitive exploration of
psychosocial concerns
Written information,
recommended websites and
contact details for support
groups. Answering basic
questions about visible difference
Social skills training, dealing with
staring, comments and
questions. Managing social
situations proactively
Cognitive behaviour therapy
aimed at identifying and
modifying maladaptive
appearance schemas
Health professional
background
All health practitioners
including GPs, practice
nurses, NHS direct
All health practitioners
working with target
groups including
doctors and nurses in
relevant specialties
Nurses in a counseling
role, clinical nurse
specialists,
occupational therapists,
maxillofacial
technicians, support
groups
Specialist training in
CBT
Figure 13: Stepped care framework for interventions to promote psychosocial adjustment in appearance
concern
The skills for providing this stepped care approach are fully developed in the manual, together
with worked patient examples, sessional guides and suggested techniques. We anticipate that
in the next phase of our work in appearance, we will start to offer training at the different levels
outlined, using the manual to inform and support this training.
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210

CONCLUSIONS AND THE WAY FORWARD
211

This series of studies represents the largest programme of research in this area to date. The
quantitative and qualitative results have confirmed the considerable distress experienced by
many people with disfiguring conditions. The research has also provided a much greater
understanding of the factors and processes involved in positive adjustment. The on-going effort
of coping with a disfiguring condition, and the multi-factorial nature of adjustment and distress
are clear, as is the huge range of individual variation in the experiences of those affected.
Levels of distress were high and debilitating for many participants, both in those actively seeking
treatment, and those accessed through community settings.
Socio-cognitive and appearance specific cognitions are key in adjustment, and are likely to be
amenable to intervention. Packages of support and intervention tailored to individual need
should be developed, trialled and refined. This process has begun. An intervention manual
designed to be delivered by psychosocial specialists in one-to-one sessions with those with
greatest need has been informed by the results of this programme, is included in this report and
will be introduced in a training workshop for specialists in November 2009.
In addition, the results indicate that adjustment is labile and can be influenced by a myriad of
factors. These fluctuations indicate the need for the routine availability of support and
intervention. Screening should be offered in health care settings and appropriate referral
pathways for specialist assessment and intervention should be developed. (For a model of how
this might work in the context of health care, see Figure 14).
Routine screening
(e.g. when attending
for treatment &/or at
times at transition or
change)
Psychological
Assessment
Surgical / Medical
Intervention
Psychological
Intervention
Psychological
Intervention
Follow up Discharge Easy access
to intervention
as necessary
Figure 14: Discussion framework for the routine availability of screening, assessment and intervention.
A comprehensive model of care will require training health professionals about psychological
adjustment to disfigurement and of ways of meeting need. Plans are currently underway to
devise a tiered approach to training, ranging from awareness-raising for all health care team
members through to conveying the specialist knowledge needed by professionals taking
particular responsibility for the psychological well being of those affected by disfigurement.
Further funding is needed for both the development of interventions and for the training of health
care professionals.
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Although this research has shown that the cognitive architecture of each individual and the
personal interpretation of appearance related information are key in adjustment, it is also
evident that the person’s social and cultural context are of considerable importance. For the
most vulnerable, messages from the media and from society are relentless. Even the most
resilient can be affected by the barrage of appearance information in their societal context.
Public education is needed to reduce the pressure on those vulnerable to appearance concerns,
and interventions should be adapted to suit the cultural context.
As is usually the case in research, the findings of this programme offer clear pointers for the
research agenda of the future. This agenda includes further examination of specific issues
raised by this programme, such as the impact on adjustment of the visibility and disguisability of
a difference. The effects of functional disability in the context of disfigurement also warrant a
more detailed exploration. Gender differences in manifestations of distress, a better
understanding of the similarities and differences in body image and appearance concerns in
those with and without disfigurements and the development of culturally sensitive measures
specifically relating to the appearance concerns of those with visible differences are also
research priorities. This research programme has focussed on the adjustment of adults, and
there is a pressing need to examine these issues in young people. This research will be a
considerable undertaking and will require the development of measures appropriate to each
developmental stage.
In addition to tangible benefits for those affected in the form of a specialist intervention, and to
plans for further packages of information and support, for the training of health care
professionals, and for school and community based public education initiatives, this research
programme has addressed an acknowledged need to increase research capacity in this area.
As the result of their experience of working on this project, several of the research assistants
are developing their newly established interest in the field. Dr. Sally-Ann Clarke
(Sheffield/Bradford) has begun her training in clinical psychology and remains committed to
research and practice in this area. Hayley James (UCL) has achieved funding to complete a
PhD and is continuing to write papers from this programme for publication. Dr. Antje
Lindenmeyer (Warwick) is continuing to develop her interest in weight and shape issues, and
the links of these to disfigurement. Dr. James Byron-Daniel (Bristol) has retained his interest in
appearance research and has established a research programme relating to exercise and
appearance. Emma Williams (Bristol) has been developing a research programme relating to
the appearance related consequences of transplants. Eleanor Walsh (Bristol) is currently
analysing data on lay perceptions of disfigurement for her MSc thesis and Liz Jenkinson
(Bristol) has been conducting the study of the training needs of GPs as part of a Professional
Doctorate programme. Liz has recently been appointed as a Research Fellow at CAR on a five
year contract and will lead a programme of research on interventions for people with
appearance related distress. Dr. Alex Clarke (Royal Free) has become a Visiting Professor at
UWE and will be working with the team at CAR on a regular basis over the next five years.
Krysia Saul (Warwick) is developing her interest in the disfigurement related adjustment of
people from BMEs and is staging a series of workshops in The Midlands.
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APPENDICES
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