Parental adherence to CF homecare: research chaplaincy career commitment

描述(申请人提供)：囊性纤维化(CF)是一种缩短生命的疾病，其病程会因不坚持在家中接受推荐的药物治疗而加剧。虽然人们对影响坚持的因素知道得很多，但对包括灵性在内的其他因素的作用却知之甚少。目标：候选人的长期目标是发展一个独立的研究生涯，成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)提高我在混合方法研究和成果研究方面的理解和能力；b)获得作为一名独立调查员取得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和数据分析方面进行进一步的培训。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(发起人)，Joel Tsevat，医学博士，公共卫生硕士(共同发起人)，Dennis Drotar，博士(共同发起人)，Kenneth Pargment，博士，Annette MaHony，博士，George Fitchett，D Min，博士。杰弗里·雅各布森博士、朗达·范戴克博士和詹姆斯·阿克顿博士。研究设计与方法：本研究的中心假设是，精神状态是儿童慢性萎缩性脑病患者父母生活中的一个因素，精神结构与坚持性有关，并且这种影响至少部分地受治疗态度、主观规范和自我效能的影响。这项提案由3个项目组成，共涉及124名儿童的父母。项目1是对24位家长进行的纵向定性研究，采用半结构化访谈的方式，以确定父母的灵性对孩子的健康和遵守意愿的影响。项目2是一项对100名父母的定量横断面研究，使用问卷和每日电话日记来量化精神变量与儿童坚持意愿的关系程度。项目3是一项对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忠诚度之间的关系在多大程度上受到态度、规范和自我效能感的调节。候选人的贡献将是将灵性整合到已经存在的忠贞行为模式中，并了解父母的灵性如何影响他们的忠贞意图和行为。拟议的研究具有重要意义，因为这种理解将使我们能够改善现有的遵守干预措施，从而改善儿童健康结果。 公共卫生相关性：对慢性护理治疗的坚持性普遍较差，导致儿童和父母更多地缺课和工作，对抗生素的需求增加(包括父母静脉注射给药抗生素)和住院治疗。尽管灵性在美国家庭中的重要性有据可查，但迄今还没有人努力探索它在父母遵守孩子推荐的家庭保健方面所起的作用。这项拟议的研究既创建了一个独立的研究人员，又确定了对现有坚持的潜在增强-通过纳入灵性来改善干预措施，这将有助于更多的坚持，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.