Cystic fibrosis (CF) is a life-shortening disorder, the course of which is exacerbated by nonadherence to recommended medical treatments at home. While much is known about factors affecting adherence, less is known about the role of other factors, including spirituality. Objectives: The Candidate's long-term goal is to develop an independent research career as an academic research chaplain focused on the role of child health outcomes and spirituality. The specific outcomes for this are award are to: a) enhance my understanding and competence in mixed-methods research and outcomes research and b) obtain the necessary professional and academic skills to succeed as an independent investigator. Training: For my career development, I plan to take further training in specific qualitative and quantitative methods and data analysis. My mentorship team is comprised of experts in the fields of outcomes research, qualitative and quantitative methods, CF, and spirituality research: Michael Seid, PhD (sponsor), Joel Tsevat, MD, MPH (co-sponsor), Dennis Drotar, PhD (co-sponsor), Kenneth Pargament, PhD, Annette Mahoney, PhD, George Fitchett, D Min, PhD. Jeffrey Jacobson, PhD, Rhonda VanDyke, PhD and James Acton, MD. Research Design &Methods: The central hypothesis is that spirituality is a factor in the lives of parents of children with CF, spiritual constructs are related to adherence, and that this effect is at least partially mediated by attitudes towards treatment, subjective norms, and self-efficacy. This proposal consists of 3 projects involving a total of 124 parents of children with CF. Project 1 is a longitudinal qualitative study with 24 parents using semi-structured interviews to determine the role of spirituality for parents in relation to their child's health and their adherence intentions. Project 2 is a quantitative cross-sectional study of 100 parents using questionnaires and the Daily Phone Diary to quantify the degree to which spiritual variables are related to adherence intentions among parents of children with CF. Project 3 is a quantitative cross-sectional study of 100 parents using the data collected in Project 2 to determine the extent to which the relationship between spiritual variables and parental adherence are mediated by attitudes, norms and self-efficacy. The Candidate's contribution will be to integrate spirituality into an already existing behavioral model of adherence, and to understand how a parent's spirituality impacts their adherence intentions and behaviors. The proposed research is significant because this understanding will enable us to improve existing adherence interventions and thus child health outcomes.
Adherence to chronic care treatments is uniformly poor, resulting in additional missed days of school and work for children and parents, increased need for antibiotics (including intravenous home administration antibiotics by parents) and inpatient hospitalizations. Despite the documented importance of spirituality in American families, little effort has yet been made to explore its role in relation to parental adherence to their child's recommended home health care. This proposed study both creates an independent researcher and identifies potential enhancements to existing adherence-improving interventions by the inclusion of spirituality that would contribute to even greater adherence and thus improved child heath.
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