Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity.

PURPOSE: Children with medical complexity (CMC) often use rehabilitative services ("therapy") to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC. METHODS: Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives. RESULTS: Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce's ability to meet the need of CMC. CONCLUSION: Setting the ideal "dose" of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.

Caregiver and Provider Experiences of Home Healthcare Quality for Children With Medical Complexity.

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.