Parental adherence to CF homecare: research chaplaincy career commitment

描述（由申请人提供）：囊性纤维化（CF）是一种缩短寿命的疾病，其病程因不遵守推荐的家庭药物治疗而加剧。虽然对影响坚持的因素了解很多，但对其他因素的作用知之甚少，包括灵性。目的：候选人的长期目标是发展独立的研究生涯，作为一名学术研究牧师，专注于儿童健康结果和灵性的作用。该奖项的具体成果是：a）提高我对混合方法研究和成果研究的理解和能力，B）获得必要的专业和学术技能，以成功地成为独立调查员。培训：为了我的职业发展，我计划进一步接受具体的定性和定量方法以及数据分析方面的培训。我的导师团队由成果研究，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，MD，MPH（共同赞助商），Dennis Drotar，博士（共同赞助商），Kenneth Pargament，博士，Annette Mahoney，博士，乔治Fitchett，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：核心假设是，精神是CF儿童的父母生活中的一个因素，精神结构与坚持有关，这种影响至少部分是由对治疗的态度，主观规范和自我效能感介导的。这项建议包括3个项目，涉及124名患有CF儿童的家长。项目1是一个纵向定性研究与24个家长使用半结构化的采访，以确定父母的精神在他们的孩子的健康和他们的坚持意图的作用。项目2是一个定量的横断面研究，100名家长使用问卷调查和每日电话日记，以量化的程度，精神变量与CF儿童的父母之间的坚持意图。项目3是一个定量的横断面研究，100名家长使用项目2中收集的数据，以确定在何种程度上的精神变量和父母的依从性之间的关系是由态度，规范和自我效能介导的。候选人的贡献将是将灵性整合到现有的坚持行为模型中，并了解父母的灵性如何影响他们的坚持意图和行为。这项研究意义重大，因为这种理解将使我们能够改善现有的依从性干预措施，从而改善儿童健康状况。 公共卫生相关性：长期护理治疗的依从性普遍较差，导致儿童和父母缺课和工作的天数增加，对抗生素的需求增加（包括父母静脉注射家庭抗生素）和住院治疗。尽管记录的精神在美国家庭的重要性，很少努力尚未作出探索其作用有关的父母坚持他们的孩子的建议家庭保健。这项拟议的研究既创建了一个独立的研究人员，并确定了潜在的增强现有的依从性，提高干预措施，包括精神，这将有助于更大的依从性，从而改善儿童健康。

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.