Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives.
| Autor: | Mooney-Doyle K; University of Maryland School of Nursing, Baltimore, Maryland., Pyke-Grimm KA; Stanford Children's Health, Palo Alto, California., Lanzel AF; Children's National Medical Center, Washington, District of Columbia., Montgomery KE; University of Wisconsin-Madison School of Nursing, Madison, Wisconsin., Hassan J; Omar's Dream Foundation, San Jose, California., Thompson A; Emory University Institutional Review Board, Atlanta, Georgia., Rouselle R; Emory University Institutional Review Board, Atlanta, Georgia., Matheny Antommaria AH; Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. |
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| Jazyk: | angličtina |
| Zdroj: | Pediatrics [Pediatrics] 2022 Oct 01; Vol. 150 (4). |
| DOI: | 10.1542/peds.2022-057502 |
| Abstrakt: | Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise. (Copyright © 2022 by the American Academy of Pediatrics.) |
| Databáze: | MEDLINE |
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