293 The case for investigating the palliative needs of children in foster care: A call to action

Abstract

Objectives/Goals: The purpose of this study was to document the publicly available literature, measurement tools, secondary data, and expert perspective on the intersectional care gaps and disparities of children with palliative needs in foster care. Methods/Study Population: Four data collection methods determined the frontier of available information on the palliative needs of children in foster care. A literature review assessed the quality and content of published evidence. A catalogue of relevant measures tools and validation results determined what psychometric tools exist for the population, how well they performed in validation studies, and if any incorporated community members in their development. The National Data Archive for Child Abuse and Neglect was consulted to assess whether existing secondary data was fit for purpose. Informal interviews will be conducted with subject matter experts (pediatrics, palliative care, foster care) to determine the legitimacy and urgency of the problem. Results/Anticipated Results: Health inequities among children in foster care and children with medical complexity (CMC) suggest a strong likelihood of unmet palliative care needs for CMC in foster care; however, no literature or data describe the scope and severity, and few insights support development of safe and supportive interventions to meet these needs. No national publicly available datasets include both foster-related case or placement information and diagnosis or service-specific data, including Medicaid data and the Adoption and Foster Care Analysis and Reporting System (AFCARS). No work has been published integrating foster parents or former foster youth input on palliative needs. Participatory action research methodologies with critically ill patients have led to improvements in patient experience and clinical care. Discussion/Significance of Impact: The lack of data, community engagement, and validated measures to identify palliative needs of children in foster care stymie efforts to identify and correct health inequities. Participatory action research is needed to meaningfully engage foster and health care partners to determine what palliative care needs should be prioritized and measured.