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

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

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

November 2022 List

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 June 22, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18546.