Researchers are being led by Aboriginal and/or Torres Strait Islander communities of regional New South Wales to develop strategies that will empower Indigenous Australians to self-manage their recovery after stroke.

Yarning up After Stroke is inspired by New Zealand’s Take Charge program, which is a self-management tool that provides a framework for stroke survivors to determine their goals for stroke recovery.

‘New Zealand researchers developed and tested a conversation-based tool for use with stroke survivors, ideally facilitated by a non-health professional matched by ethnicity, gender and age to the stroke survivor. 

'This tool, which was tested with both Indigenous and non-Indigenous New Zealanders, has been shown to be one of the very few stroke recovery tools that contributes to statistically significant improvements in self-perceived recovery and disability,’ says Dr Heidi Janssen, a physiotherapist and researcher at the University of Newcastle who is leading a pilot study for the project funded by the Stroke Foundation.

‘We are using the Take Charge philosophy as a platform to develop something similar in an Australian context. 

'We are yarning with Aboriginal and/or Torres Strait Islander communities to understand what they believe are the solutions required to strengthen the stroke recovery experience of their community as they transition out of hospital. 

'We endeavour to create a similar yarning-based self-determined model of stroke recovery.’

Heidi is part of a team led by University of Newcastle stroke researcher Professor Chris Levi that was awarded $485,000 funding by the Medical Research Future Fund for the Yarning up After Stroke study in 2021. 

The initial phases of the project are being conducted with Aboriginal and/or Torres Strait Islander communities on Gomeroi/Kamilaroi/Gamilaroi Country, which encompasses the regional areas of Tamworth and Quirindi in north-eastern New South Wales.

‘It’s important to ensure that the community leads this project.

'An open and trusted relationship between researchers and Aboriginal and/or Torres Strait Islander communities involved in research is essential and something that has not always been the case. 

'We must work together and learn from one another on the research journey if we are to truly come up with feasible and effective solutions to some very challenging problems,’ Heidi says.

‘Of course, we are all in it to make a difference, but we don’t have the solutions; we don’t understand the problems; we don’t live the problems.

'So we sit and listen and learn and may sometimes make mistakes, from which I hope we continue to learn. 

'There is a lot of distrust of research and researchers in some communities and rightly so, because there has been a lot of research done in the past that was extremely unethical, harmful and done without community consultation or reciprocity.’

Heidi says their project team has a significant Aboriginal membership. 

There are several Aboriginal people with lived experience of having a stroke on their team, along with emerging and experienced Aboriginal researchers, Aboriginal health workers and clinicians and other respected community members, including Elders, who provide leadership and cultural guidance for the project.

‘It’s essential to consult many community members and to seek their guidance, especially those who are very well respected, such as community Elders. 

'We have also been connecting with community groups and people who have lived experience to try to understand what is appropriate and meaningful for Aboriginal and/or Torres Strait Islander Peoples who have lived with or cared for someone who has had a stroke,’ says Heidi.

As an example, she says, terms like intervention and rehabilitation can have negative connotations for Aboriginal and/ or Torres Strait Islander Peoples. 

It is therefore not always appropriate to use these terms and researchers must look to the community to understand how to respectfully describe these concepts in a meaningful and sensitive way.

The pilot study of the program is almost complete. 

Based on yarning, which is a culturally respectful, conversational way to learn, listen and share and receive information, the program aims to identify the needs and wants of Aboriginal Peoples for community-based stroke support and recovery.

‘We are at the stage of analysing our yarns and talking with health service providers to work together to develop a tool with a model of care that we aim to embed and then evaluate. 

'We are envisaging that a yarning-based approach will most definitely be involved,’ says Heidi.

‘People within our team have taught us that if you ask the question, you have to be ready for the answer. 

'You have to listen and be respectful of the answer.

'We started yarning and we learned that very quickly. 

'The resulting yarning-based recovery tool might be good but it won’t be the only strategy to empower people to take control of their stroke recovery.

'There are many other issues making it challenging for people to make good health choices and live their best lives after a significant health event. 

'Barriers include the availability of rehabilitation therapy support, access to GPs, transport, health literacy and the fact that the majority of Aboriginal and/or Torres Strait Islander Peoples in my health district live in regional and rural areas. 

'We have a lot to consider for the next phase.’

These issues, along with the general concerns of working with people in regional areas where rehabilitation and support services can be very limited, make developing a program for stroke recovery more complicated, she says, and underline the importance of working with both the local community and the health professionals in the area.

In the next phase, which is expected to begin in the coming months with the support of the Medical Research Future Fund grant, the team will produce a co-designed evidence and strengths-based conversational tool to support stroke recovery. 

This next phase (a feasibility study) seeks to determine the feasibility of using such a tool and to explore its potential beneficial effects on the emotional health and quality of life of Aboriginal and/or Torres Strait Islander Peoples living with stroke. 

Ultimately, the model will be adapted and tested in other regions across Australia.

‘The needs of Gomeroi/Kamilaroi Aboriginal and/or Torres Strait Islander Peoples are likely to be different from the needs of Aboriginal/Torres Strait Islander Peoples in Alice Springs, for example. 

'Each strategy needs to be adapted to meet the local needs of each individual community,’ Heidi says.

‘We are trying to build a framework around the process of working with different communities so as to adapt the fundamental elements of this stroke recovery tool to be appropriate for each community.’