Khaliah Johnson1, Kristen E Allen2, William West3, Wynette Williams-Kirkwood3, Karen Wasilewski-Masker4, Cam Escoffery3, Katharine E Brock5. 1. Pediatric Palliative Care, Children's Healthcare of Atlanta, Atlanta, Georgia, USA; Department of Pediatrics, Emory University, Atlanta, Georgia, USA. Electronic address: Khaliah.Johnson@choa.org. 2. Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, Atlanta, Georgia, USA. 3. Rollins School of Public Health, Emory University, Atlanta, Georgia, USA. 4. Department of Pediatrics, Emory University, Atlanta, Georgia, USA; Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, Atlanta, Georgia, USA. 5. Pediatric Palliative Care, Children's Healthcare of Atlanta, Atlanta, Georgia, USA; Department of Pediatrics, Emory University, Atlanta, Georgia, USA; Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
Abstract
CONTEXT: Pediatric palliative care (PPC) can improve quality of life of children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, and PPC resources and personnel are often inequitably distributed toward 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 used 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 article, 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 and 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. CONCLUSION: 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.
CONTEXT: Pediatric palliative care (PPC) can improve quality of life of children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, and PPC resources and personnel are often inequitably distributed toward 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 used 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 article, 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 and 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. CONCLUSION: 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.
Authors: Julia Wager; Larissa Alice Kubek; Maria Brenner; Sara Calmanti; Carmel Doyle; Malin Lövgren; Ulrika Kreicbergs; Leontien Kremer; Philippe Le Moine; Guillaume Robert; Meggi Schuiling-Otten; Peter Schröder-Bäck; Eduard Verhagen; Boris Zernikow Journal: BMC Palliat Care Date: 2022-10-17 Impact factor: 3.113