Home Healthc Now 2020 May/Jun;38(3):138-146
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.
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.