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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. 118
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. 119
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Identifying the psychosocial factor
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Follow-on Studies: Emma Halliwell,
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Warwick Site (Lead: Dr. Rodger Char
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SECTION 3 Page OVERALL SYNTHESIS OF
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Study 3 3.1 Response rates for resp
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Introduction EXECUTIVE SUMMARY This
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The Impact of Appearance-Related Di
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Research Further investigation shou
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Participants were recruited from ho
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BACKGROUND & RATIONALE FOR THE RESE
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The challenge of developing compreh
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STAGE ONE (Inputs/Predisposing Fact
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In order to address the first aim o
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Role of the advisory panel in the r
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credit is due to Anjte Lindenmeyer,
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INTRODUCTION The largest part of th
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South West (via the Bristol site) a
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INPUTS/ PREDISPOSING FACTORS Age Ge
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Appearance-related processing Valen
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Anger/hostility The Refined Aggress
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RESULTS Due to the size of the data
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Figure 4.1(b) Comparative box-and-w
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Table 4.2 Correlation of quantitati
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Table 5.1(c) Frequency of number of
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Table 6.1(a) Frequency and percenta
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Table 7.1 summarises the degree of
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Figure 7.1(a): Scores on the DAS 24
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10.1 Appearance-related Social Anxi
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HADS Anxiety, and the relative magn
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10.4 Aggression When entering the v
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elatively small but statistically s
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11. Clinic Specific Data In order t
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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
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affect and 46% for both anxiety and
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likely they are to have difficultie
Page 80 and 81: Information Attention Encoding/Stor
Page 82 and 83: such as shame, were omitted. Where
Page 84 and 85: RATIONALE In an attempt to offer pa
Page 86 and 87: FINDINGS Theme I. Descriptive Accou
Page 88 and 89: easts made her ‘flat chested’ a
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Page 92 and 93: them noticing: ‘I try to hide my
Page 94 and 95: 5.) Time Structures What was striki
Page 97 and 98: STUDY 3 LONGITUDINAL QUANTITATIVE S
Page 99 and 100: Table 3.1 Response rates for respon
Page 101 and 102: Table 3.4 Regression Model for DAS2
Page 103 and 104: Table 3.6 Regression Model for Depr
Page 105 and 106: Table 3.8 Regression Model for Posi
Page 107 and 108: 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
Page 116 and 117: Stage 1 - predisposing factors - ch
Page 118 and 119: Appearance schema - beliefs about o
Page 120 and 121: “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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Page 132 and 133: A focus group methodology was chose
Page 134 and 135: any situation. Strategies involved
Page 136 and 137: CONCLUSIONS Whereas previous resear
Page 138 and 139: SUMMARY • Nine focus group interv
Page 140 and 141: RESULTS Eight key themes were ident
Page 142 and 143: 2e. Medical Interpretation There wa
Page 144 and 145: “I think I am nicer to a person w
Page 146 and 147: 6d. Generational differences Elders
Page 148 and 149: • The myths about the foetal diso
Page 150 and 151: SUMMARY • Vitiligo is a condition
Page 152 and 153: identified themselves as South Asia
Page 154 and 155: “…my parents would have been de
Page 156 and 157: 2a. Appearance shame and disgust Ma
Page 158 and 159: much…sometimes I just want to bec
Page 160 and 161: For respondents like AA (described
Page 162 and 163: study 6, that in addition to indivi
Page 164 and 165: AIMS The aims of this study were to
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Page 168 and 169: SUMMARY • Participants (n=38) too
Page 170 and 171: leaving 82 invitations not responde
Page 172 and 173: The vignettes alternated between de
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Page 176 and 177: SUMMARY • The study involved the
Page 178 and 179: METHOD Participants Student sample
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Clinic attendees On the anxiety sub
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170
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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
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SUMMARY • This study investigates
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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
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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
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Age Gender Ethnicity Relationship s
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Whilst the main thrust of this rese
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a strong evidence base in other are
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Nurses in a counseling role, clinic
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210
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This series of studies represents t
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214
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Ben-Tovim, D.I. and Walker, M.K. (1
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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,
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Scheier, M.F., Carver, C.S. and Bri
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Wright, G.E., Parker, J.C., Smarr,
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