Positive Exposure: A Photography and Video Intervention for Individuals With Craniofacial Differences
Condition: Craniofacial Differences
Study type: Observational

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 surgeries.
      This information will not be connected to participants' names and will be stored in a
      database protected by password.

      There are three parts to the study. In Part 1, patients will be asked to write a personal
      reflection (for as long as they wish) on their experiences of having their picture taken and
      being video taped. They will also fill out a brief survey, taking about 15 minutes. They are
      able to do this at home and will mail their responses to the researchers. In Part 2, they
      will take part in a photo-shoot (about 1 hour) conducted by the founder and program director
      of Positive Exposure and then take part in a video interview (about 30 minutes) conducted by
      a co-investigator from that organization. In Part 3, to take place 1 month following the
      photo-shoot, participants will write a final reflection that describes their experiences with
      Positive Exposure and then fill out another brief survey (about 10 minutes). Surveys used in
      the study will be the Self-Esteem Scale, Perceived Social Stigma Scale, and State Hope Scale.
      Photo-shoots and video interviews will be held at the studio of Positive Exposure in New York
      City or, if necessary, at a location closer to the participant's home. The projected time
      line of this pilot study is 10 months.

      Direct benefits are not the goal of participation in this study. However, participants may
      enjoy the photo-shoots and video interviews, as well as the process of reflecting and sharing
      their life and photo experiences with others. This pilot study will be a starting point for
      future research into Positive Exposure for adolescents and adults with visible genetic
      conditions.
    

Detailed description: 
      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.
    

Keywords: Photography; Self-Esteem; Perceived Social Stigma; Hopefulness; Cleft Lip and Palate; Hemifacial Microsomia; Treacher Collins Syndrome; Mobius Syndrome; Apert Syndrome; Videography; Craniofacial Differences; Self -Esteem