Integrating Step-down Care in Community-based Paediatric Palliative Services: A Realist Evaluation

Abstract

AbstractBackgroundYoung persons with advanced life-limiting illness living at home have fluctuating and complex needs. Community paediatric palliative care (PPC) is still predominantly specialist-led. This poses a potential care vacuum as medical conditions stabilise and specialised care ceases. One home-based PPC service introduced a step-down care program (COMET) as bridge to continuous yet adaptable support. Above overall effectiveness, how different outcomes are achieved is also investigated for context.MethodsWe conducted a realist evaluation, using a mixed-methods case series design to study COMET operations and impact within the community care context (Context->Mechanism->Outcomes). Patient medical records and in-depth interviews with family caregivers and PPC professionals generated rich quantitative and qualitative data for analysis.ResultsOf 121 patients under specialist PPC homecare, 18 (14.9%) were enrolled in COMET since November 2020; 12 of these formed individual case studies. Interviews with 15 caregivers and 7 PPC clinicians produced three crucial findings: (i) Ongoing access to specialist care is required for ever evolving complexities; (ii) Continuing support at home is vital for regular management and intermittent emergencies; (iii) COMET harmonizes shifting levels of support within a single unified framework, safeguarding existing rapport and care consistency.ConclusionUntil generalist PPC expertise becomes prevalent outside the hospital setting, novel care models like COMET could plug gaps in community PPC services by offering flexible care options. Continuity of care, efficient resource management, and superior service quality are inherent benefits, if meaningful care tiering through substantive patient assessments are refined further in future iterations.