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“Time's Up”: The Experience of Entering Residential Aged Care for Young People with Acquired Neurological Disorders and Their Families

Published online by Cambridge University Press:  13 September 2018

Sandra Barry ,
Lucy Knox Open the ORCID record for Lucy Knox [Opens in a new window]  and
Jacinta M. Douglas Open the ORCID record for Jacinta M. Douglas [Opens in a new window]
Sandra Barry
Affiliation:
Living with Disability Research Centre, La Trobe University, Victoria, Australia Summer Foundation, Victoria, Australia
Lucy Knox
Affiliation:
Living with Disability Research Centre, La Trobe University, Victoria, Australia Summer Foundation, Victoria, Australia
Jacinta M. Douglas*
Affiliation:
Living with Disability Research Centre, La Trobe University, Victoria, Australia Summer Foundation, Victoria, Australia
*
Address for correspondence: Professor Jacinta Douglas, Living with Disability Research Centre, College of Science Health and Engineering, La Trobe University, Bundoora, Victoria 3086, Australia. E-mail: [email protected]
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Abstract

Background and aims: Previous research has highlighted that living in residential aged care (RAC) is associated with a range of negative outcomes for adults with acquired neurological disorders. This study sought to understand the lived experience of entering RAC for young people and their family members and characterise their needs during this process.

Method: Data included 64 written and verbal submissions to the 2015 Senate Inquiry into the Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia. In line with hermeneutic tradition, text was analysed using thematic analysis.

Results: Entry to RAC was experienced as a complex process that coalesced around three key events: an unexpected health crisis, a directive that time's up and the individual is required to leave the healthcare setting, with a subsequent decision to move into RAC. This decision was made in the absence of time, knowledge of options or adequate support.

Conclusions: Findings suggest that there are both immediate practice changes and longer term policy responses that can support the health and disability systems to uphold the rights of people with acquired disability to choose where and how they will live their lives.

Keywords

qualitativebrain injuriesnursing homeresidential aged careaccommodation
Type
Articles
Information
Brain Impairment , Volume 20 , Issue 1 , March 2019 , pp. 37 - 48
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2018 

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