Impact of specialized pediatric palliative care programs on communication and decision-making. Issue 8 (August 2019)

• Record Type: Journal Article
• Authors: Streuli, Jürg C.; Widger, Kimberley; Medeiros, Christina; Zuniga-Villanueva, Gregorio; Trenholm, Madeline
• Is Part Of: Patient education and counseling. Volume 102:Issue 8(2019)
• Page Start: 1404
• Page End: 1412
• Publication Date: 2019-08
• Subjects: Palliative care -- Pediatrics -- Children -- Decision-making -- Communication -- Counseling -- Specialized pediatric palliative care program; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2019.02.011
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: Specialized pediatric palliative care programs may positively impact communication. Specialized pediatric palliative care programs may enhance decision-making. Studies are mostly of poor quality with serious shortcomings. Ill children and family other than parents were not participants in any studies. The specific program elements linked to improved outcomes were unclear. Abstract: Objective: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. Methods: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018. Results: We 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. Conclusion: SPPC 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 implications: More 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.