| Autor: |
Holly L. Spraker-Perlman, Taylor Aglio, Erica C. Kaye, Deena Levine, Brittany Barnett, Kathryn Berry Carter, Michael McNeil, Lisa Clark, Justin N. Baker, the St. Jude Quality of Life Steering Council |
| Jazyk: |
angličtina |
| Rok vydání: |
2021 |
| Předmět: |
|
| Zdroj: |
Children, Vol 8, Iss 6, p 472 (2021) |
| Druh dokumentu: |
article |
| ISSN: |
2227-9067 |
| DOI: |
10.3390/children8060472 |
| Popis: |
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. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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