Perspectives on rehabilitation for Aboriginal people with stroke: a qualitative study

ABSTRACT

Background

Aboriginal and Torres Strait Islander (hereinafter respectfully termed Aboriginal) people have a greater incidence of stroke at a younger age than non-Indigenous people in Australia. The needs and preferences of Aboriginal people for rehabilitation and longer-term support remain largely unknown.

Objectives

To identify the long-term rehabilitation needs of Aboriginal people who have a stroke, from the perspectives of Aboriginal persons with stroke and health care providers.

Methods

Aboriginal people who had experienced stroke in the previous three years were interviewed to obtain their experiences of rehabilitation care. Health professionals who provided care in each of six designated hospitals and nearby community health sites were involved in focus groups and individual interviews. Information obtained was thematically analyzed separately for Aboriginal people with stroke and health professionals, and compared using Nvivo.

Results

Among six Aboriginal people with stroke and 78 healthcare providers, four main themes emerged: the importance of family; variable access to services; the impact of stroke on Aboriginal peoples’ lives; and making positive choices. Communication and involvement of family was highlighted as essential for a shared understanding, particularly when making decisions about participating in short and long-term rehabilitation. Co–morbidities, conflicting priorities, and inadequate or inflexible services and transport compounded issues with changing life roles. Stories of resilience were also shared.

Conclusions

Aboriginal people report making positive lifestyle changes, but experience significant unmet rehabilitation needs. Addressing issues of communication, advocacy and flexible delivery should improve some of the shortfalls in service provision, particularly in regional and remote areas.

KEYWORDS:

• Stroke
• rehabilitation
• Aboriginal
• Torres Strait Islander
• Indigenous
• First Nations

Acknowledgments

We would like to acknowledge the people with stroke and their family members who participated in the study, and thank them for their generosity in sharing their personal experiences and knowledge, and giving so generously of their time. We would also like to acknowledge Kim Morey, Wendy Keech, and our community advisors Uncle Harold Stewart, Auntie Janice Rigney, Uncle George Kenmore, and Auntie Cynthia Weetra.

Availability of data and materials

The datasets and recordings generated and/or analysed during the current study are not publicly available because these are small communities and publication of such data would compromise anonymity. However, a limited transcribed dataset, without age and other potentially identifying information, is available from the corresponding author on reasonable request.

Supplementary material

Supplemental data for this article can be accessed on the publisher’s website.

Disclosure of Interest

The authors report no conflict of interest.

Dissemination

The findings of this study have been fed back to participants, health care sites, ethics committees, and research fora. The experiences of people with stroke have also been incorporated into the 2019 revision of the South Australian Health Stroke protocol, and educational videos have been produced to support cultural training (see https://vimeo.com/309029435/ef26caffe7 and https://vimeo.com/309029469/ff985f8708).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was funded through a Strategic Grant from the  Faculty of Medicine, Nursing and Health Sciences, Monash University  [SGS15-0082]. AGT was supported by a fellowship from the National Health & Medical Research Council (Australia; [GNT1042600]). AB was supported by a Viertel Senior Medical Research Fellowship, Sylvia and Charles Viertel Charitable Foundation. The funding bodies had no role in the design of the study, nor in the collection, analysis and interpretation of data.