Adolescents’ Perspectives on Living and Growing up with Treacher Collins Syndrome: A Qualitative Study

Abstract

Objective This study explored the experiences and essences of growing up and living with Treacher Collins syndrome (TCS) from an adolescent perspective. Design A qualitative approach using the long interview method was used to explore the adolescents’ experiences. Semistructured interviews and peer debriefing techniques were used to gather and verify data with each participant. Participants A purposive sampling technique was used to recruit a sample of six adolescents with TCS, ranging in age from 12 to 18 years, who received care from a craniofacial center in a large pediatric hospital. Results The themes central to the adolescents’ experiences were balancing sameness and difference and the journey toward social and self-acceptance. Five subthemes further described this experience: reconstructing perceptions of others; making meaning of the difference; forming friendships and fitting in; handling staring and teasing; and excelling. Conclusions The study group described good psychosocial adjustment, experienced an increasing acceptance of self, TCS, and social acceptance over time and demonstrated resilient adaptive strategies (optimism, motivation, and positive meaning making). They were, however, also challenged by the social stigma associated with difference and by the challenges of finding a good fit in their school environments in meeting unique needs, particularly in their early grades. This study highlights the value of using a qualitative research approach in furthering our understanding of the experiences of children and youth with facial differences.