Parents as Advocates for Pediatric Palliative Care

Title

Parents as Advocates for Pediatric Palliative Care

Creator

Lord BT; Morrison W; Goldstein RD; Feudtner C

Publisher

Pediatrics

Date

2021

Subject

Advocacy; Palliative care; Parents; Pediatrics

Description

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.

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

Special Edition #2

Citation

Lord BT; Morrison W; Goldstein RD; Feudtner C, “Parents as Advocates for Pediatric Palliative Care,” Pediatric Palliative Care Library, accessed September 30, 2022, https://pedpalascnetlibrary.omeka.net/items/show/18071.

Social Bookmarking