Using Photovoice to Explore Quality of Life Factors of Adults With Crouzon Syndrome.

In the United States, one in 60,000 adults live with Crouzon Syndrome (CS) and facial malformations. Phenomenological studies about their lived experiences and quality of life are lacking. The purpose of this participatory action research study was to gain a richer understanding of the perceived biopsychosocial and socioecological factors that impact quality of life for adults living with CS using Photovoice. Another aim was to develop a conceptual framework of quality of life for those experiencing CS to enhance tailored health education and services. A purposeful sample of nine adults with CS were recruited from U.S. national surgery centers and support groups. Participants used photography to represent their experiences and participated in individual interviews and focus groups. Data were analyzed with the participants using thematic analysis, and 44 themes emerged which informed the development of a quality of life conceptual framework and action plan described in this article.