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The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups

journal contribution
posted on 05.11.2020, 22:24 by Samar Aoun, FJ Gill, MB Phillips, S Momber, L Cuddeford, R Deleuil, R Stegmann, Denise Howting, ME Lyon
© The Author(s), 2020. 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.

History

Publication Date

01/01/2020

Journal

Palliative Care and Social Practice

Volume

14

Pagination

14p. (p. 1-14)

Publisher

SAGE

ISSN

2632-3524

Rights Statement

The Author reserves all moral rights over the deposited text and must be credited if any re-use occurs. Documents deposited in OPAL are the Open Access versions of outputs published elsewhere. Changes resulting from the publishing process may therefore not be reflected in this document. The final published version may be obtained via the publisher’s DOI. Please note that additional copyright and access restrictions may apply to the published version.

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