Measurement of Disease Specific Social Support in Adolescents with Cystic Fibrosis

摘要: This study documented the creation and initial validation of the Perceived Adolescent Social Support: Cystic Fibrosis (PASS-CF) inventory. The inventory was developed from semi-structured interviews of adolescents with cystic fibrosis (CF) and measured both supportive and non-supportive behaviors provided to adolescents by their family and friends. This study reports the findings from these interviews, results of the pilot testing of the measure, exploratory analyses of the utility of individual items, and the relationships between supportive and non-supportive behaviors and important clinical outcomes, such as treatment adherence, health-related quality of life (HRQoL), and other health outcomes. In particular, the study compared two measurement models suggested by popular definitions of social support. The "perceived support" model emphasized adolescents' cognitive appraisals of the support provided to them by family and friends, and the functional support model emphasized the utility of specific behaviors in managing CF. Results provided support for both models and provided insights into important next steps in the study of social support in adolescents with CF