Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development

Title

Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development

Creator

Miller E G;Weaver M S; Ragsdale L; Hills T; Humphrey L; Williams C S P; Morvant A; Pitts B; Waldman E; Lotstein D; Linebarger J; Feudtner C; Klick J C

Publisher

Journal of Palliative Medicine

Date

2020

Subject

pediatric palliative care; program development

Description

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.

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

August 2020 List

Collection

Citation

Miller E G;Weaver M S; Ragsdale L; Hills T; Humphrey L; Williams C S P; Morvant A; Pitts B; Waldman E; Lotstein D; Linebarger J; Feudtner C; Klick J C, “Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development,” Pediatric Palliative Care Library, accessed July 25, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17176.

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