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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
Page 1: Identifying the psychosocial factor
Page 4 and 5: Follow-on Studies: Emma Halliwell,
Page 6 and 7: Warwick Site (Lead: Dr. Rodger Char
Page 8 and 9: SECTION 3 Page OVERALL SYNTHESIS OF
Page 10 and 11: Study 3 3.1 Response rates for resp
Page 13 and 14: Introduction EXECUTIVE SUMMARY This
Page 15: The Impact of Appearance-Related Di
Page 20 and 21: Participants were recruited from ho
Page 23 and 24: BACKGROUND & RATIONALE FOR THE RESE
Page 25 and 26: The challenge of developing compreh
Page 27 and 28: STAGE ONE (Inputs/Predisposing Fact
Page 29 and 30: In order to address the first aim o
Page 31 and 32: Role of the advisory panel in the r
Page 33: credit is due to Anjte Lindenmeyer,
Page 36 and 37: INTRODUCTION The largest part of th
Page 38 and 39: South West (via the Bristol site) a
Page 40 and 41: INPUTS/ PREDISPOSING FACTORS Age Ge
Page 42 and 43: Appearance-related processing Valen
Page 44 and 45: Anger/hostility The Refined Aggress
Page 46 and 47: RESULTS Due to the size of the data
Page 48 and 49: Figure 4.1(b) Comparative box-and-w
Page 50 and 51: Table 4.2 Correlation of quantitati
Page 52 and 53: Table 5.1(c) Frequency of number of
Page 54 and 55: Table 6.1(a) Frequency and percenta
Page 56 and 57: Table 7.1 summarises the degree of
Page 58 and 59: Figure 7.1(a): Scores on the DAS 24
Page 60 and 61: 10.1 Appearance-related Social Anxi
Page 62 and 63: HADS Anxiety, and the relative magn
Page 64 and 65: 10.4 Aggression When entering the v
Page 66 and 67:
elatively small but statistically s
Page 68 and 69:
11. Clinic Specific Data In order t
Page 70 and 71:
Table 11.3: Percentage of participa
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anxiety was in the low to mild rang
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Visibility and areas of concern The
Page 76 and 77:
affect and 46% for both anxiety and
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likely they are to have difficultie
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Information Attention Encoding/Stor
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such as shame, were omitted. Where
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RATIONALE In an attempt to offer pa
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FINDINGS Theme I. Descriptive Accou
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easts made her ‘flat chested’ a
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confidence to other people’s reac
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them noticing: ‘I try to hide my
Page 94 and 95:
5.) Time Structures What was striki
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STUDY 3 LONGITUDINAL QUANTITATIVE S
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Table 3.1 Response rates for respon
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Table 3.4 Regression Model for DAS2
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Table 3.6 Regression Model for Depr
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Table 3.8 Regression Model for Posi
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0.016), and optimism (r = -0.183, n
Page 109:
and follow up). However, focusing o
Page 112 and 113:
SUMMARY • Twenty-six participants
Page 114 and 115:
There were ten well adjusted stable
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Stage 1 - predisposing factors - ch
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Appearance schema - beliefs about o
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“I’m in charge ...I think that
Page 122 and 123:
“Only when people don’t underst
Page 124 and 125:
appearance anxiety and coping with
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114
Page 128 and 129:
116
Page 130 and 131:
SUMMARY • This study aimed to exp
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A focus group methodology was chose
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any situation. Strategies involved
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CONCLUSIONS Whereas previous resear
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SUMMARY • Nine focus group interv
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RESULTS Eight key themes were ident
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2e. Medical Interpretation There wa
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“I think I am nicer to a person w
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6d. Generational differences Elders
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• The myths about the foetal diso
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SUMMARY • Vitiligo is a condition
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identified themselves as South Asia
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“…my parents would have been de
Page 156 and 157:
2a. Appearance shame and disgust Ma
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much…sometimes I just want to bec
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For respondents like AA (described
Page 162 and 163:
study 6, that in addition to indivi
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AIMS The aims of this study were to
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154
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SUMMARY • Participants (n=38) too
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leaving 82 invitations not responde
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The vignettes alternated between de
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162
Page 176 and 177:
SUMMARY • The study involved the
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METHOD Participants Student sample
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Clinic attendees On the anxiety sub
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170
Page 184 and 185:
SUMMARY • Semi-structured intervi
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Seven key themes were identified an
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“I've heard tell that a lot of pe
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4. Physical adaptation From so smal
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6. Emotional impact & Emotional sup
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182
Page 196 and 197:
SUMMARY • This study investigates
Page 198 and 199:
Table 12.1 Demographic data by grou
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variance in anxious mood was accoun
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appearance of younger people (Harri
Page 204 and 205:
SUMMARY • This study is recruitin
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METHOD Participants GPs from across
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196
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The results of each study have been
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Others expressed dissatisfaction wi
Page 214 and 215:
Age Gender Ethnicity Relationship s
Page 216 and 217:
Whilst the main thrust of this rese
Page 218 and 219:
a strong evidence base in other are
Page 220 and 221:
Nurses in a counseling role, clinic
Page 222 and 223:
210
Page 224 and 225:
This series of studies represents t
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214
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Ben-Tovim, D.I. and Walker, M.K. (1
Page 230 and 231:
Crocker, J., Voelkl, K., Testa, M.
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Greenberg, L. S. and Safran, J. D.
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Macgregor, F., Abel, T.M., Brut, A.
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Pollard, L., Choy, E.H. and Scott,
Page 238 and 239:
Scheier, M.F., Carver, C.S. and Bri
Page 240 and 241:
Wright, G.E., Parker, J.C., Smarr,
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