Impact of specialized pediatric palliative care programs on communication and decision-making |
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| Institution: | 1. Dept. of Bioethics and Humanities, School of Medicine, University of Washington, Seattle, WA, United States;2. Dept. of Pediatrics, School of Medicine, University of Washington, Seattle, WA, United States;3. Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA, United States;4. Dept. of Biobehavioral Nursing & Health Systems, School of Nursing, University of Washington, Seattle, WA, United States;5. Department of Anesthesiology and Pain Medicine, School of Medicine, University of Washington, Seattle, WA, United States;6. School of Social Work, University of Washington, Seattle, WA, United States;7. Center for Child Health, Behavior and Development, Seattle Children''s Research Institute, Seattle, WA, United States;8. Department of Biostatistics, University of Washington, Seattle, WA, United States;9. Dept. of Medicine, Division of Pulmonary and Critical Care Medicine, School of Medicine, University of Washington, Seattle, WA, United States;10. Dept. of Rehabilitative Medicine, School of Medicine, University of Washington, Seattle, WA, United States |
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| Abstract: | ObjectiveTo summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions.MethodsOur search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018.ResultsWe reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs.ConclusionSPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality.Practice implicationsMore research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes. |
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| Keywords: | Palliative care Pediatrics Children Decision-making Communication Counseling Specialized pediatric palliative care program |
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