Ignite Creation Date:
2024-05-05 @ 4:55 PM
Last Modification Date:
2024-10-26 @ 9:25 AM
Study NCT ID:
NCT00340964
Status:
COMPLETED
Last Update Posted:
2019-12-12
First Post:
2006-06-19
Brief Title:
Positive Exposure A Photography and Video Intervention for Individuals With Craniofacial Differences
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Positive Exposure A Photography and Video Intervention for Individuals With Craniofacial Differences
Status:
COMPLETED
Status Verified Date:
2014-01-06
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
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 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 participants 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
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 participants 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
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 05-HG-N173 | None | None | None |