The art of coping with a craniofacial difference: helping others through "Positive Exposure".
Finding ways to cope with social stigmatization is an important aspect of achieving adaptation for people living with visible genetic differences. This study describes the way individuals with craniofacial differences use an innovative photography and video experience with Positive Exposure (PE), a non-profit organization based in New York City, as a way to cope with their conditions. Thirty-five individuals between 12 and 61 years of age participated in this study. We administered surveys comprised of open-ended qualitative questions and quantitative measures designed to assess self-esteem, perceived stigma, and hopefulness. Data for this analysis was generated from the written questionnaires and interview transcripts. Most participants reported high levels of self-esteem and hopefulness, suggesting that they were relatively well adapted to their condition. Almost all participants described experiences of stigmatization throughout their lives. However, participants demonstrated their ability to implement a variety of coping strategies to manage stigma. "Helping others" emerged as a prominent strategy among participants, aiding in the often lifelong process of adapting to their genetic difference. PE was described as an avenue through which participants could reach out to individuals and society at large, helping them adapt further to their condition. "Helping others" may also benefit individuals with craniofacial differences who do not consider themselves to be well adapted to their condition. Health care providers can collaborate with PE, advocacy groups and other community or support groups to identify additional ways individuals with craniofacial differences can help themselves by reaching out to others.
Loewenstein
Johanna
J
National Human Genome Research Institute/NIH, Social and Behavioral Research Branch, Bethesda, Maryland 20892, USA. loewensteinj@mail.nih.gov
Sutton
Erica
E
Guidotti
Rick
R
Shapiro
Kristin
K
Ball
Karen
K
McLean
Diane
D
Biesecker
Barbara
B
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D019465:Craniofacial Abnormalities / Q000235:genetics / Q000523:psychology* / Q000534:rehabilitation*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010781:Photography; D012649:Self Concept; D012944:Social Support; D013240:Stereotyping; D011795:Surveys and Questionnaires; D014742:Videodisc Recording