Respite needs of families receiving palliative care

Smith, Christine H., Graham, Carol A. and Herbert, Anthony R. (2017) Respite needs of families receiving palliative care. Journal of Paediatrics and Child Health, 53 2: 173-179. doi:10.1111/jpc.13324


Author Smith, Christine H.
Graham, Carol A.
Herbert, Anthony R.
Title Respite needs of families receiving palliative care
Journal name Journal of Paediatrics and Child Health   Check publisher's open access policy
ISSN 1440-1754
1034-4810
Publication date 2017-02-01
Year available 2017
Sub-type Article (original research)
DOI 10.1111/jpc.13324
Open Access Status Not yet assessed
Volume 53
Issue 2
Start page 173
End page 179
Total pages 7
Place of publication Chichester, West Sussex, United Kingdom
Publisher Wiley-Blackwell Publishing
Language eng
Subject 2735 Pediatrics, Perinatology, and Child Health
Abstract Aim: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this. Methods: A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned. Results: Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider. Conclusions: There is disparate provision of respite care with the main perceived barrier to attaining ‘ideal respite’ being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.
Formatted abstract
Aim: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.

Methods: A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned.

Results: Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider.

Conclusions: There is disparate provision of respite care with the main perceived barrier to attaining ‘ideal respite’ being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.
Keyword Child
Life-limiting illness
Palliative care
Respite
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: HERDC Pre-Audit
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Created: Mon, 20 Mar 2017, 20:37:00 EST by Anthony Herbert on behalf of Children's Health Queensland Clinical Unit