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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 2020-11-05, 22:24 authored by Samar AounSamar Aoun, FJ Gill, MB Phillips, S Momber, L Cuddeford, R Deleuil, R Stegmann, Denise HowtingDenise 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.


Publication Date



Palliative Care and Social Practice




14p. (p. 1-14)





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