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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. 140
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) 141
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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
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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
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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
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 128 and 129: 116
Page 130 and 131: SUMMARY • This study aimed to exp
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 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
Page 180 and 181: Clinic attendees On the anxiety sub
Page 182 and 183: 170
Page 184 and 185: SUMMARY • Semi-structured intervi
Page 186 and 187: Seven key themes were identified an
Page 188 and 189: “I've heard tell that a lot of pe
Page 190 and 191: 4. Physical adaptation From so smal
Page 192 and 193: 6. Emotional impact & Emotional sup
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Page 196 and 197: SUMMARY • This study investigates
Page 198 and 199: Table 12.1 Demographic data by grou
Page 200 and 201: 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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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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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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