Positive Exposure: A Photography and Video Intervention for Individuals With Craniofacial Differences

This proposed pilot study aims to describe the use of an intervention, developed by Positive Exposure, for adolescents and young adults who may be challenged by the stigma associated with craniofacial differences. This non-profit organization uses professional photo-shoots and video interviews to explore the psychosocial experiences of people living with genetic conditions. The combined use of professional photo-shoots and video interviews is an innovative way to address issues such as self-esteem, body image and feelings of social awkwardness and anxiety that has never been systematically explored with individuals who have craniofacial differences. According to the experiences of individuals with albinism, Proteus syndrome, and Marfan syndrome, interacting with Positive Exposure has resulted in enhanced feelings about oneself as an attractive, capable person. This study will ascertain how individuals with craniofacial differences think and feel about being photographed and videoed and what specific benefits the Positive Exposure intervention may have had for them. This study uses a mixed methods design coupling qualitative analysis with quantitative measures of perceived social stigma, self-esteem, and hope. Data will be gathered through two written personal reflections, one completed before research volunteers participate in a professional photo shoot and video-interview and the second completed after the experience. The qualitative data will be subject to content analysis and the quantitative data will be scored to describe perceived effects of the intervention and to document differences in outcome measures. This pilot study will not be powered to achieve statistical significance but rather will generate descriptive data suggesting whether using these measures in larger populations may feasibly capture desired outcomes. This pilot study will provide the foundation for future research exploring the use of photo-shoots and video-interviews as an intervention in a variety of populations with genetic differences, powered to answer specific hypotheses.