Foster Carolyn C, Fuentes Molly M, Wadlington Lauren A, Jacob-Files Elizabeth, Desai Arti D, Simon Tamara D, Mangione-Smith Rita
Carolyn C. Foster, MD, MSHS, is an Assistant Professor, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Mary Ann & J. Milburn Smith Child Health Research Program, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois. Molly M. Fuentes, MD, MS, is an Assistant Professor, Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, Seattle Children's Hospital, Seattle, Washington. Lauren A. Wadlington, MSW, LICSW, is a Social Work Clinical Supervisor, Department of Social Work, Seattle Children's Hospital, Seattle, Washington. Elizabeth Jacob-Files, MA, MPH, is a Qualitative Researcher, Seattle Children's Research Institute, Seattle, Washington. Arti D. Desai, MD, MSPH, is an Assistant Professor, Department of Pediatrics, University of Washington, Seattle, Washington, Seattle Children's Hospital, Seattle, Washington. Tamara D. Simon, MD, MSPH, is an Associate Professor, Department of Pediatrics, University of Washington, Seattle, Washington, Seattle Children's Hospital, Seattle, Washington. Rita Mangione-Smith, MD, MPH, is a Professor, Department of Pediatrics, University of Washington, Seattle, Washington, Seattle Children's Hospital, Seattle, Washington.
Home Healthc Now. 2020 May-Jun;38(3):138-146. doi: 10.1097/NHH.0000000000000857.
Despite a growing population of children with medical complexity, little is known about the current quality of pediatric home healthcare. The objective of this study was to characterize the quality of pediatric home healthcare experienced by primary family caregivers (parents) and healthcare providers of children with medical complexity. Semistructured, in-depth key informant interviews of 20 caregivers and 20 providers were conducted and analyzed for factors affecting home healthcare quality using the Institute of Medicine's quality framework (effective, safe, patient-centered, timely, equitable, and efficient). System complexity, insurance denials, and workforce shortages affected patients' ability to establish and maintain access to home healthcare leading to hospital discharge delays and negative family impacts. When home healthcare was accessible, respondents experienced it as effective in improving patient and family daily life and minimizing use of emergency and hospital services. However, respondents identified a need for more pediatric-specific home healthcare training and increased efficiencies in care plan communication. Overall, home healthcare was not perceived as timely or equitable due to access barriers. This study provides a new conceptual framework representing the relationship between home healthcare quality and outcomes for children with medical complexity for future evaluations of quality improvement, research, and policy initiatives.
尽管患有复杂疾病的儿童数量不断增加，但目前对于儿科家庭医疗保健的质量却知之甚少。本研究的目的是描述患有复杂疾病儿童的主要家庭照顾者（父母）和医疗服务提供者所体验到的儿科家庭医疗保健的质量。对20名照顾者和20名提供者进行了半结构化的深入关键信息人访谈，并使用医学研究所的质量框架（有效、安全、以患者为中心、及时、公平和高效）分析了影响家庭医疗保健质量的因素。系统复杂性、保险拒付和劳动力短缺影响了患者建立和维持家庭医疗保健服务的能力，导致出院延迟并对家庭产生负面影响。当能够获得家庭医疗保健服务时，受访者认为它在改善患者和家庭日常生活以及尽量减少急诊和住院服务使用方面是有效的。然而，受访者指出需要更多针对儿科的家庭医疗保健培训，并提高护理计划沟通的效率。总体而言，由于获取障碍，家庭医疗保健未被视为及时或公平的。本研究提供了一个新的概念框架，代表了家庭医疗保健质量与患有复杂疾病儿童的结局之间的关系，以供未来对质量改进、研究和政策举措进行评估。
