Family Experiences with Palliative Care in Freestanding Paediatric Hospices: A Scoping Review
Title
Family Experiences with Palliative Care in Freestanding Paediatric Hospices: A Scoping Review
Creator
Dorman J; Raffin BS; daSilva CK; Miller M
Identifier
Publisher
BMJ Supportive and Palliative Care
Date
2022
Subject
Bereavement; Pediatrics; Family; Scoping review; Hospice care; Terminal care
Description
BACKGROUND: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families' experiences of this care within freestanding paediatric hospices. OBJECTIVES: To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement. CRITERIA: Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families' experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English. EXCLUSION CRITERIA: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss. SOURCES OF EVIDENCE: Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results. CHARTING METHODS: The scoping review was guided by recommendations from Arksey and O'Malley and Levac et al. RESULTS: A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas. CONCLUSIONS: There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
Rights
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Citation List Month
September 2022 List
URL Address
Collection
Citation
Dorman J; Raffin BS; daSilva CK; Miller M, “Family Experiences with Palliative Care in Freestanding Paediatric Hospices: A Scoping Review,” Pediatric Palliative Care Library, accessed April 19, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18270.