Parental adherence to CF homecare: research chaplaincy career commitment

描述（由申请人提供）：囊性纤维化（CF）是一种缩短生命的疾病，其病程因不坚持在家接受推荐的药物治疗而加剧。虽然对影响坚持的因素了解很多，但对包括精神在内的其他因素的作用知之甚少。目标：候选人的长期目标是发展一个独立的研究事业，作为一个专注于儿童健康结果和灵性作用的学术研究牧师。该奖项的具体成果是：a)提高我对混合方法研究和结果研究的理解和能力；b)获得作为一名独立研究者成功所需的专业和学术技能。培训：为了我的职业发展，我计划在具体的定性和定量方法以及数据分析方面进行进一步的培训。我的导师团队由结果研究，定性和定量方法，CF和灵性研究领域的专家组成：Michael Seid博士（赞助商），Joel Tsevat医学博士，公共卫生硕士（共同赞助商），Dennis Drotar博士（共同赞助商），Kenneth Pargament博士，Annette Mahoney博士，George Fitchett博士，D Min博士。Jeffrey Jacobson博士，Rhonda VanDyke博士和James Acton医学博士。研究设计和方法：中心假设是精神是CF患儿父母生活中的一个因素，精神结构与依从性有关，并且这种影响至少部分受到对治疗的态度，主观规范和自我效能的调节。该提案包括3个项目，涉及124名CF儿童的父母。项目1是一项纵向定性研究，涉及24名父母，使用半结构化访谈来确定父母的灵性在孩子健康和坚持意愿方面的作用。项目2是对100名父母的定量横断面研究，使用问卷调查和每日电话日记来量化精神变量与CF儿童父母坚持意愿的关系程度。项目3是对100名父母的定量横断面研究，使用项目2中收集的数据来确定精神变量与父母坚持之间的关系在多大程度上被态度、规范和自我效能所中介。候选人的贡献将是将灵性整合到已经存在的依从性行为模型中，并了解父母的灵性如何影响他们的依从性意图和行为。拟议的研究意义重大，因为这种理解将使我们能够改善现有的依从性干预措施，从而改善儿童健康结果。

DESCRIPTION (provided by applicant): 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. PUBLIC HEALTH RELEVANCE: 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.