Caregiver and Provider Experiences of Home Healthcare for Children with Medical Complexity

Abstract

Background Children with medical complexity (CMC) are a small but growing population that uses home healthcare (HHC). The objective of this study was to characterize the quality of HHC experienced by caregivers and healthcare providers of CMC. Methods In-depth key informant interviews of primary caregivers (n=20) and providers (n=20) of CMC were conducted in Washington State. A semi-structured interview guide was used to elicit experiences of quality of HHC. Transcribed interviews were coded and analyzed to identify factors affecting HHC quality using the Institute of Medicine’s quality framework (effective, safe, patient-centered, timely, equitable, and efficient). Results System complexity, insurance denials, and workforce shortages affected CMC’s ability to establish and maintain access to HHC leading to hospital discharge delays and negative family impacts. When HHC was accessible, respondents experienced HHC as effective in improving patient and family daily life and minimizing use of emergency and hospital services. Care was perceived as safer if HHC providers were present, but respondents identified a need for more pediatric-specific HHC training. Caregivers valued developmentally appropriate patient-centered HHC. HHC was not perceived as timely or equitable due to access barriers. Respondents experienced inefficiencies in communicating the care plan. Conclusion This study identified areas for improvement to mitigate perceived quality gaps in establishing and maintaining high-quality HHC for CMC in Washington State. This study also provides a conceptual framework to explaining the relationship between quality of HHC and outcomes for CMC for future quality improvement, research, and policy initiatives.