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

Samar M Aoun, Fenella J Gill, Marianne B Phillips, Suzanne Momber, Lisa Cuddeford, Renee Deleuil, Roswitha Stegmann, Denise Howting, Maureen E Lyon, Samar M Aoun, Fenella J Gill, Marianne B Phillips, Suzanne Momber, Lisa Cuddeford, Renee Deleuil, Roswitha Stegmann, Denise Howting, Maureen E Lyon

Abstract

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.

Keywords: cancer; children; health professionals; life-limiting illness; non-cancer; paediatric palliative care; parents; support needs.

Conflict of interest statement

Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

© The Author(s), 2020.

Figures

Figure 1.
Figure 1.
Support needs identified by parents at baseline and follow-up,n = 28.
Figure 2.
Figure 2.
Differences in support needs between the cancer and non-cancer groups at baseline.
Figure 3.
Figure 3.
Differences in support needs between the cancer and non-cancer groups at follow-up.

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Source: PubMed

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