A qualitative study of legal and social justice needs for people with aphasia

Abstract

This paper presents an exploratory investigation of situations in which people with aphasia may be vulnerable to legal and access to justice issues. The study used a qualitative descriptive approach to analyse 167 de-identified transcriptions of previously collected interviews, with 50 participants with mild-to-severe aphasia following stroke, 48 family members, and their treating speech-language pathologists. Situations experienced by people with aphasia and their family members were coded using key-word searches based on the previously published framework developed by Ellison and colleagues to describe situations of vulnerability to legal and access to justice needs for older people. Health and financial and consumer situations were most frequently identified in the data. Additionally, there were a number of situations found specifically relating to people with aphasia involving their signatures and credit card use. Instances of discrimination and abuse were also identified, and, although infrequent, these issues point to the profound impact of aphasia on the ability to complain and, hence, to ensure rights to care are upheld. The findings of this study are consistent with previous research in suggesting that legal and access to justice needs are an important issue for people with aphasia and their families.

Keywords::

• Communication access
• legal needs
• aphasia
• legal capacity
• decision-making
• rights

Acknowledgements

This research was completed in partial fulfilment of the requirements for the award of Honours for Karen Barr (now Morris) in the Bachelor of Speech Pathology degree, University of Newcastle (November 2012), under the supervision of Professor Alison Ferguson and Professor Linda Worrall. The data used in this project were collected as part of a grant from the National Health and Medical Research Council, Australia (NHMRC Project Grant ID: 401532 – What people with aphasia want: Toward person-centred goal- setting in aphasia rehabilitation) led by Professor Linda Worrall from University of Queensland, with Associate Professor Bronwyn Davidson, Dr Deborah Hersh, Professor Alison Ferguson, Dr Tami Howe, and Dr Sue Sherratt. The project received ethical clearance from the Behavioural & Social Sciences Ethical Review Committee (BSSERC #2006000005) University of Queensland, and the Hunter New England Human Research Ethics Committee (HAREC #06/09/27/5.06). In keeping with the provisions of ethical clearance, the data used in this secondary study made use of the de-identified transcriptions only (approved by HNEHealth HREC, variation application approved 1 October 2009, and registered with University of Newcastle HREC). The authors wish to acknowledge and thank the participants for their time and contribution, and the Aphasia Registry (Communication Disability Centre, University of Queensland) for assistance with recruitment.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.