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

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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.

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Most cited references 23

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The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study.

Gail Ewing, Caroline Brundle, Sheila Payne … (2013)

Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice.

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Quantifying the burden of caregiving in Duchenne muscular dystrophy

Erik Landfeldt, Peter Lindgren, Christopher F. Bell … (2016)

Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers’ rating of patients’ health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0.85 (95 % CI 0.82–0.88) and 0.77 (0.74–0.80) across ambulatory classes and 0.88 (0.85–0.90) and 0.57 (0.39–0.74) across caregivers’ rating of patients’ health and mental status. Mean VAS score was 0.74 (0.73–0.75), mean SF-12 Mental Health Component Summary score 44 (43–45), and mean ZBI score 29 (28–30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients’ health and mental status, was significantly associated with annual household cost burden (>$5000 vs. 50 vs. <25 h 3.35, 2.32–4.83) (p < 0.007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease. Electronic supplementary material The online version of this article (doi:10.1007/s00415-016-8080-9) contains supplementary material, which is available to authorized users.

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The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial

Samar M. Aoun, Gunn Grande, Denise Howting … (2015)

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain.

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Author and article information

Contributors

Samar M. Aoun:

ORCID: https://orcid.org/0000-0002-4073-4805

Fenella J. Gill

Marianne B. Phillips

Suzanne Momber:

ORCID: https://orcid.org/0000-0001-6232-4930

Lisa Cuddeford

Renee Deleuil

Roswitha Stegmann

Denise Howting

Maureen E. Lyon

Journal

Journal ID (nlm-ta): Palliat Care Soc Pract

Journal ID (publisher-id): PCR

Journal ID (hwp): sppcr

Title: Palliative Care and Social Practice

Publisher: SAGE Publications (Sage UK: London, England )

ISSN (Electronic): 2632-3524

Publication date (Electronic): 25 September 2020

Publication date Collection: 2020

Volume: 14

Electronic Location Identifier: 2632352420958000

Affiliations

[1-2632352420958000]Professor, Perron Institute for Neurological and Translational Science, 8 Verdun Street, Nedlands, WA 6009, Australia

[2-2632352420958000]La Trobe University, Melbourne, VIC, Australia

[3-2632352420958000]Child and Adolescent Health Service, Perth Children’s Hospital, Nedlands, WA, Australia; Curtin University, Perth, WA, Australia

[4-2632352420958000]Child and Adolescent Health Service, Perth Children’s Hospital, Nedlands, WA, Australia

[5-2632352420958000]Child and Adolescent Health Service, Perth Children’s Hospital, Nedlands, WA, Australia

[6-2632352420958000]Child and Adolescent Health Service, Perth Children’s Hospital, Nedlands, WA, Australia

[7-2632352420958000]Child and Adolescent Health Service, Perth Children’s Hospital, Nedlands, WA, Australia

[8-2632352420958000]La Trobe University, Melbourne, VIC, Australia

[9-2632352420958000]La Trobe University, Melbourne, VIC, Australia; Centre for Medical Research, Harry Perkins Institute of Medical Research, The University of Western Australia, Perth, WA, Australia

[10-2632352420958000]Children’s National Hospital, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA

Author notes

[*] s.aoun@ 123456latrobe.edu.au

Author information

Samar M. Aoun https://orcid.org/0000-0002-4073-4805

Suzanne Momber https://orcid.org/0000-0001-6232-4930

Article

Publisher ID: 10.1177_2632352420958000

DOI: 10.1177/2632352420958000

PMC ID: 7525220

PubMed ID: 33033802

SO-VID: 87a373c1-fcdf-4c85-8d9d-9f6d4c2c2e6a

License:

This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

History

Date received : 17 June 2020

Date accepted : 17 August 2020

Funding

Funded by: Department of Health, Government of Western Australia, FundRef https://doi.org/10.13039/501100006065;

Award ID: none

Custom metadata

cover-date January-December 2020

typesetter ts1

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

Data availability:

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

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

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Abstract

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Cancer Metabolism

Most cited references 23

The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study.

Quantifying the burden of caregiving in Duchenne muscular dystrophy

The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial

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