Maintaining quality of life for people with intellectual disabilites during end-of-life in rural areas of Australia

Title
Maintaining quality of life for people with intellectual disabilites during end-of-life in rural areas of Australia
Publication Date
2022
Author(s)
Wark, Stuart
( author )
OrcID: https://orcid.org/0000-0002-5366-1860
Email: swark5@une.edu.au
UNE Id une-id:swark5
Hussain, Rafat
Müller, Arne
Parmenter, Trevor
Type of document
Journal Article
Language
en
Entity Type
Publication
Publisher
Routledge
Place of publication
Australia
DOI
10.1080/23297018.2022.2057232
UNE publication id
une:1959.11/52198
Abstract

Changing disease patterns and improved life expectancy have resulted in a growing cohort of older Australians with an intellectual disability, with the provision of end-of-life care to this group only recently emerging as a priority area. Particularly in rural settings, where the availability of both specialist and general local services may be limited, end-of-life care support remains under-explored. The current project aimed to specifically examine end-of-life care provision in rural areas, the focus of this article being individual quality-of-life during the end-of-life stage. The study used a focus group interview model with 22 rural disability support workers from either New South Wales or Queensland, who had direct experience in providing end-of-life care. An advisory committee, composed of people with intellectual disabilities, carers, and service providers, offered overall project guidance. Participants elaborated on factors that contributed to quality-of-life during end-of-life care. Verbatim transcripts of the focus groups were thematically analysed by the team, and three thematic categories identified: availability of services; individual needs; and untreated pain. Specifically, participants noted concerns about the unavailability of health services, inflexibility of funding support, artificial government barriers, and a widespread lack of pain relief for individuals. We conclude that end-of-life support people with intellectual disabilities in rural areas has to trade off the ongoing delivery of quality-of-life activities against the increasing need for health care, which itself is subject to accessibility issues, and which is exacerbated by the more general funding challenges seen across all locations with the National Disability Health Insurance implementation.

Link
Citation
Research and Practice in Intellectual and Developmental Disabilities, 9(2), p. 139-151
ISSN
2329-7026
2329-7018
Start page
139
End page
151

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