The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
Title
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
Creator
Aoun SM; Gill FJ; Phillips MB; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon ME
Identifier
Publisher
Palliative Care and Social Practice
Date
2020
Subject
cancer; children; health professionals; life-limiting illness; paediatric palliative care; parents; support needs
Description
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
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Citation List Month
Special Edition #2
URL Address
Collection
Citation
Aoun SM; Gill FJ; Phillips MB; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon ME, “The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups,” Pediatric Palliative Care Library, accessed April 1, 2023, https://pedpalascnetlibrary.omeka.net/items/show/18092.