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 S M; Gill F J; Phillips M B; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon M E

Publisher

Palliative Care and Social Practice

Date

2020

Subject

children; cancer; life-limiting illness; non-cancer; parents; paediatric palliative care; article.; interest with respect to the research; support needs; and/or publication of this; authorship; health professionals

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.

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

Oncology 2020 List

Collection

Citation

Aoun S M; Gill F J; Phillips M B; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon M E, “The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups,” Pediatric Palliative Care Library, accessed July 26, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17359.

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