Clinical Trial: Positive Exposure: A Photography and Video Intervention for Individuals With Craniofacial Differences
Study Status: Completed
Recruit Status: Completed
Study Type: Observational
Official Title: Positive Exposure: A Photography and Video Intervention for Individuals With Craniofacial Differences
Brief Summary:
This study will describe the use of an intervention, developed by an organization called Positive Exposure, to improve self-perceptions among adolescents and young adults who may encounter the stigma, or negative effect, of differences in their head and face. Photo-shoots and video interviews will be used. The combined use of those techniques is a new way to address aspects such as self-esteem, body image, and feelings of social awkwardness and anxiety-that is, a way that has never been systematically explored with people who have craniofacial differences. The conditions that participants in this study have will include cleft lip and palate, Apert syndrome, hemifacial microsomia, Treacher Collins syndrome, Mobius syndrome and Sturge-Weber syndrome. Among the goals of photography and video interviews are to help people to define themselves by their strengths rather than by their conditions; visually confront discrimination by others; investigate the possibilities for social support, networking, and creative problem-solving that can be developed for people with craniofacial conditions; and promote hopefulness for the future. Positive Exposure is a nonprofit organization founded in 1997. It investigates the psychosocial experiences of people who have genetic, physical, and mental conditions, among all ages and ethnic and cultural backgrounds of people. According to experiences of people with several conditions, participation with Positive Exposure has enhanced their feelings about themselves as attractive, capable individuals.
Patients ages 12 years and older who have craniofacial conditions may be eligible for this pilot study. About 30 people will participate. Participants will be asked to provide the diagnosis of their craniofacial conditions. They will also be asked how many surgeries and what kinds they have had over the years, and how old they were at the time of the s
Detailed Summary: 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
Sponsor: National Human Genome Research Institute (NHGRI)
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Information By: National Institutes of Health Clinical Center (CC)
Dates:
Date Received: June 19, 2006
Date Started: June 13, 2005
Date Completion: January 6, 2014
Last Updated: April 19, 2017
Last Verified: January 6, 2014
