Parents as their Child's Certified Nursing Aide: Evaluation of a Unique Home Health Care Model for Children with Medical Complexity

项目摘要/摘要 儿童医疗复杂性(CMC)是资源最密集的儿科患者，具有较高的 未得到满足的家庭医疗保健需求。他们的家庭照顾者承受着与长期照看相关的巨大压力， 对生活质量、经济和就业状况以及身体和情感产生相关的不利影响 健康。迫切需要创新的医疗保健提供模式来提高生活质量和健康 患者及其家属的结果。一个这样的项目已经存在：科罗拉多州的父母作为他们孩子的父母 注册护士助理(PCNA)计划。这一模式允许符合条件的父母通过医疗补助获得补偿， 他们医学上复杂的孩子的CNA抵消了与就业中断相关的经济压力 当这些父母不得不呆在家里照顾孩子的时候。虽然该计划似乎在以下方面具有优势 在许多方面，它从未被研究过，尽管它的管理分配了相当多的资源。这 混合方法提案将通过评估利益相关者对 增殖细胞核抗原计划的优点和缺点，以及通过量化其对卫生保健利用和成本的影响 在CMC。在目标1中，我们将采访家庭照顾者、初级保健提供者和家庭保健机构 接受增殖细胞核抗原服务的CMC管理员。半结构化访谈将探索人们对 计划对患者和照顾者的生活质量的影响，特别关注潜在的好处，如 提高照顾者的自我效能，以及潜在的陷阱，如增加照顾者的负担。我们将使用 定性内容分析方法，以生成主题来表征增殖细胞核抗原模型的优点、缺点和 对照顾者和患者的生活质量的影响。在目标2中，我们将进行回溯性队列分析，以 评估这样一种假设，即住院的CMC与父母或 亲属作为CNA(增殖细胞核抗原)与非亲属作为CNA(RCNA)的比较。我们将使用 医院管理数据链接到医疗补助索赔数据，以获得对结果的可靠分析 感兴趣的人。主要结果是在60天内再次住院，次要结果是 出院后60天内的急诊科使用情况和累计医疗费用。我们假设 接受增殖细胞核抗原治疗的患者再住院率较低，急诊科就诊次数较少，累积就诊次数较少 与RCNA接受者相比，出院后60天内的医疗费用。这项建议解决了这一不足 CMC以家庭为中心的自我管理计划，并将确定 该计划的优势和劣势。这些发现将被用来设计对增殖细胞核抗原的改进 未来在实用有效性试验中进行测试的模型，并传播这个有前途的儿科之家 CMC的医疗保健范例。这项研究建议与NINR支持以下研究的使命相一致 针对慢性病的以患者为中心的自我管理计划，为照顾者提供更好的工具来满足 他们的护理责任，以及改善慢性病患者的生活质量。

Project Summary/Abstract Children with medical complexity (CMC) are the most resource intensive pediatric patients and have high unmet home health care needs. Their family caregivers incur significant stress related to chronic caregiving, with associated adverse impacts on quality of life, financial and employment status, and physical and emotional health. Innovative health care delivery paradigms are sorely needed to improve quality of life and health outcomes for patients and their families. One such program already exists: Colorado’s Parents as their Child’s Certified Nursing Aide (pCNA) program. This model allows eligible parents to be compensated by Medicaid as their medically complex child’s CNA offsetting financial pressures associated with employment disruption when these parents have to stay home to take care of their children. While the program seems advantageous in many ways, it has never been studied, despite allocation of considerable resources to its administration. This mixed methods proposal will address the current evidence gap by assessing stakeholders’ perspectives of the benefits and drawbacks of the pCNA program, and by quantifying its impact on health care utilization and costs in CMC. In Aim 1 we will interview family caregivers, primary care providers, and home health agency administrators of CMC who receive pCNA services. Semi-structured interviews will explore perceptions of the program’s impact on patients’ and caregivers’ quality of life with specific focus on potential benefits such as improved caregiver self-efficacy, and potential pitfalls such as increased caregiver burden. We will use qualitative content analysis methods to generate themes to characterize pCNA model benefits, drawbacks, and impacts on caregivers’ and patients’ quality of life. In Aim 2, we will perform a retrospective cohort analysis to assess the hypothesis that healthcare utilization and costs are lower for hospitalized CMC with parents or relatives as their CNA (pCNA) compared with those who have non-relatives as their CNA (rCNA). We will use hospital administrative data linked to Medicaid claims data in order to obtain robust analyses of the outcomes of interest. The primary outcome is hospital readmission within 60 days, and secondary outcomes are emergency department use and cumulative healthcare costs within 60 days of discharge. We hypothesize that pCNA recipients will have lower readmission rates, fewer emergency department visits, and lower cumulative healthcare costs within 60 days of discharge compared with rCNA recipients. This proposal addresses the lack of evidence for the pCNA model, a family-centered self-management program for CMC, and will identify strengths and weaknesses of the program. The findings will be used to design improvements to the pCNA model for future testing in a pragmatic effectiveness trial, and to disseminate this promising pediatric home health care paradigm for CMC. This research proposal aligns with the NINR’s mission to support research on patient-focused self-management programs for chronic conditions, provide caregivers with better tools to fulfill their caregiving responsibilities, and to improve quality of life for individuals with chronic illness.