In the United States, adults with Crouzon syndrome---congenital anomalies of the cranium and face---lack appropriate health programs to address factors that impact their quality of life and overall well-being. More understanding of these factors may facilitate educational programs that could improve health outcomes. The purpose of this qualitative study was to identify and explore biopsychosocial, environmental, and socioeconomic factors that impeded and promoted health and well-being of U.S. adults with Crouzon syndrome. A participatory action research design was employed using Photovoice, individual interviews, and focus groups. A theoretical sample of 9 adults with Crouzon was recruited via volunteer and snowball sampling through the Craniofacial Foundation of Arizona; the Children's Craniofacial Association; Children's Hospital of Pittsburgh; and other surgery centers, support groups, and online forums. Participants received Photovoice training and collected data for 2 months. Individual interviews using the SHOWeD method and a focus group were held to discuss participants' photo meanings and explore emergent themes. Photographic, interview, and focus group data were synthesized using constant comparative analysis; subsequently, theory was constructed and an action plan developed in a follow-up focus group. Results included a definition of Crouzon quality of life and factors that promoted or impeded it, positive and negative coping mechanisms, changes to quality of life over time, a Crouzon quality of life model, and an action plan to address needs and barriers. These important contributions may be used to develop initiatives to improve health outcomes and Crouzon quality of life, thereby driving positive social change within the community.
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