Doctor of Philosophy
Cystic Fibrosis, a life threatening autosomal recessive genetic disease, is characterized by a defective gene resulting in the production of thick mucus that obstructs the lungs and pancreas. CF requires intensive management performed at the home. An initial pilot study was performed to describe knowledge of CF related diabetes (CFRD) in adults with CF. The findings of this study, which demonstrated that adults with CF lacked sufficient knowledge about CFRD confirmed the need to explore additional factors of self-management guided by a theoretical framework. The second study presented in this dissertation used the Individual and Family Self-Management Theory (IFSMT) to describe context (condition-specific and individual and family factors) and process (self-efficacy and knowledge) and outcome (family self-management) variables for caregivers of children with CF. It also compared differences in context, process, and outcomes in caregivers based on socioeconomic status (Medicaid vs. private insurance), and explored correlations among context, process, and outcomes. Participants for this cross-sectional descriptive study were caregivers of individuals with CF who were under the age of 18 and diagnosed with CF for at least 9 months. Participants completed a demographic survey and questionnaires that included measures of perceived disease severity (VAS), depression (Patient Health Questionnaire), self-efficacy (Perceived Health Competence Scale, Mountain West Cystic Fibrosis Consortium Questionnaire), knowledge (CF Knowledge and Attitudes Questionnaire), and self management behaviors (Self-Management Behaviors Questionnaire) Additional information was collected on the children with CF and included demographic information as well as height/weight/BMI, pulmonary function test results, medication profile, and insurance status.
Participants in this study were primarily female caregivers with high self-efficacy, and average knowledge. The children with CF in this study had moderate treatment complexity and normal/mild impairment in lung function. Deficits were noted in the areas of caregivers’ reproductive and genetic knowledge. This study found differences between Medicaid and private insurance groups related to knowledge. There were significant relationships between disease severity and CF specific self-efficacy and nutritional surveillance as well as general self-efficacy and respiratory surveillance.
These findings confirmed that the IFMST would provide a consistent framework to guide future studies aimed at identifying factors that influence self-management behaviors of CF in patients and their caregivers.
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Available for download on Saturday, December 03, 2022