Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives
Title
Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives
Creator
Mooney-Doyle K; Pyke-Grimm K A; Lanzel AF; Montgomery KE; Hassan J; Thompson A; Rouselle R; Matheny Antommaria AH
Identifier
Publisher
Pediatrics
Date
2022
Subject
Institutional Review Board; Palliative Care
Description
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.
Rights
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Citation List Month
November 2022 List
URL Address
Collection
Citation
Mooney-Doyle K; Pyke-Grimm K A; Lanzel AF; Montgomery KE; Hassan J; Thompson A; Rouselle R; Matheny Antommaria AH, “Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives,” Pediatric Palliative Care Library, accessed April 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18546.