Growing older with lifelong disability

what is "quality of life" in the middle years?

Kathleen Tait, Rafat Hussain, Stuart Wark, Francis Fung

Research output: Contribution to journalArticle

Abstract

Background
This study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia.

Methods and procedures
A cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents.

Results
The overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD , 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q.

Conclusions
The findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options.
Original languageEnglish
Pages (from-to)206-215
Number of pages10
JournalBritish Journal of Learning Disabilities
Volume48
Issue number3
Early online date7 Jun 2020
DOIs
Publication statusPublished - Sep 2020

Keywords

  • community care
  • empowerment issue
  • intellectual disabilities
  • residential services

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