Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources

Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources

Johnson K; Allen K E; West W; Williams-Kirkwood W; Wasilewski-Masker K; Escoffery C; Brock K E

Journal of Pain and Symptom Management

2020

community needs assessment (CNA); pediatric hospice; pediatric palliative care

CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed towards urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access. OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services. METHODS: The CNA utilized a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion manuscript, entitled "A Methodological Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources." RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility, high importance recommendations included expanding PPC education for both providers and patients, and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services. CONCLUSIONS: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.

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June 2020 List