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Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within,...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8226717/ https://www.ncbi.nlm.nih.gov/pubmed/34205109 http://dx.doi.org/10.3390/children8060472 |
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author | Spraker-Perlman, Holly L. Aglio, Taylor Kaye, Erica C. Levine, Deena Barnett, Brittany Berry Carter, Kathryn McNeil, Michael Clark, Lisa Baker, Justin N. |
author_facet | Spraker-Perlman, Holly L. Aglio, Taylor Kaye, Erica C. Levine, Deena Barnett, Brittany Berry Carter, Kathryn McNeil, Michael Clark, Lisa Baker, Justin N. |
author_sort | Spraker-Perlman, Holly L. |
collection | PubMed |
description | As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care. |
format | Online Article Text |
id | pubmed-8226717 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-82267172021-06-26 Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development Spraker-Perlman, Holly L. Aglio, Taylor Kaye, Erica C. Levine, Deena Barnett, Brittany Berry Carter, Kathryn McNeil, Michael Clark, Lisa Baker, Justin N. Children (Basel) Article As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care. MDPI 2021-06-03 /pmc/articles/PMC8226717/ /pubmed/34205109 http://dx.doi.org/10.3390/children8060472 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Spraker-Perlman, Holly L. Aglio, Taylor Kaye, Erica C. Levine, Deena Barnett, Brittany Berry Carter, Kathryn McNeil, Michael Clark, Lisa Baker, Justin N. Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development |
title | Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development |
title_full | Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development |
title_fullStr | Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development |
title_full_unstemmed | Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development |
title_short | Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development |
title_sort | leveraging grief: involving bereaved parents in pediatric palliative oncology program planning and development |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8226717/ https://www.ncbi.nlm.nih.gov/pubmed/34205109 http://dx.doi.org/10.3390/children8060472 |
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