Stigma and Quality of Life of Youth with Facial Differences
(“Project First Impressions”)

Principal Investigators: Donald Patrick, Ph.D.; University of Washington, Seattle, WA; Kathleen Kapp-Simon, Ph.D.; Shriners Hospital for Children, Chicago and Northwestern University, Chicago; Ronald Strauss, DMD, Ph.D.; University of North Carolina, Raleigh-Durham, NC.

Co-Principal Investigator: Tari Topolski, Ph.D.; University of Washington, Seattle, WA; Pravin K Patel, M.D.; Shriners Hospital for Children, Chicago and Northwestern University, Chicago.

Youth with facial differences are frequently noticed because of their appearance. It is more difficult for an individual with visible facial differences to blend into the crowd. Thus the anonymity most people take for granted when shopping, going to the park, or just walking about town is not available to youth who have visible facial differences.

The stigma and quality of life of youth with facial differences study (called “Project First Impressions” for short) has as its long term goal the creation and dissemination of an evidence-based social skills training program using video technology that will enhance the ability of youth with facial differences to fit in with their peers. It is believed that teaching youth with facial differences specific ways of responding to other people’s curiosity, questions, staring, or teasing will help reduce the degree of stigma experienced by these youth and in turn improve their perceived quality of life.

This multi-site project has several stages. In order to develop a method of measuring ‘stigma’, we have developed a “First Impressions” rating scale using feedback from youth with and without facial differences. The rating scale includes characteristics typically ascribed to people including attributes such as attractiveness, intelligence, and friendliness. Adults and peers are using the scale to rate first impressions of youth with and without facial differences. These scores will be compared to youth reported quality of life.

A second stage of this study is to develop methodologies for examining the association of various social skills adolescents actually use in stigmatizing situations with stigma ratings and self-reported quality of life. Focus groups and individual interviews were used to identify ‘best strategies’ for coping with difficult social situations. This information, in conjunction with theory based literature, was used to create a series of video vignettes that portray adolescent actors with facial differences responding in different ways (both adaptive and maladaptive) to stigmatizing social situations. We are in the process of determining if the manner in which a youth with a facial difference responds to these situations influences the way that youth is perceived by peers and adults.

The final stages of the project will involve the development of video-based methodologies that can be used by cleft-craniofacial teams to teach social skills to youth and their families.