Platform Presentation The Joint Annual Meeting of the Stroke Society of Australasia (SSA) and Smartstrokes 2023

“Well, I may as well go home because I felt no one was listening to me”: Yarning with people living with stroke about their recovery experience. A qualitative study.  (#62)

Simone Owen 1 , Reakeeta Smallwood 2 , Uncle Neville Sampson 3 , Aunty Audrey Trindall 3 4 , Joe Miller 4 , Kim Usher AM 5 , Jackson Newberry-Dupe 6 , Rachel Peake 7 , Natalie Ciccone 8 , Vickie Brandy 7 , Christopher Levi 6 9 10 , Heidi Janssen 1 9 10 , and The Yarning up After Stroke Collaborative Group 11
  1. Hunter Stroke Service, Hunter New England Local Health District, New Lambton Heights, NSW, Australia
  2. Newcastle’s Department of Rural Health, University of Newcastle, Tamworth, NSW, Australia
  3. Community Elder, Tamworth, NSW, Australia
  4. Consumer with lived experience , Tamworth, NSW, Australia
  5. School of Health, University of New England, Armidale, NSW, Australia
  6. School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia
  7. Hunter New England Local Health District, Tamworth, NSW, Australia
  8. School of Medical and Health Sciences, Edith Cowan University, Joondalup, WA, Australia
  9. Heart and Stroke Program , Hunter Medical Research Institute, New Lambton Heights, NSW, Australia
  10. Hunter New England Health Local Health District, New Lambton Heights, NSW, Australia
  11. Cardiovascular Health Mission, Medical Research Future Fund, Australia

Background: We acknowledge the burden and risk of stroke in Aboriginal and/or Torres Strait Islander* populations in regional Australia is significant. Access to culturally safe stroke recovery care tools and services is important in optimising quality of life after stroke.

 

Aims: To understand the recovery experience and challenges of Aboriginal people living with stroke on Gamilaroi country of regional NSW, Australia.

 

Methods: Under the leadership of the Gamilaroi community, community participatory action research methods were undertaken incorporating individual and group yarn-ups with Aboriginal people in the community living with stroke and their family. This relational approach was continued throughout the qualitative analytic process, with a non-Aboriginal qualitative researcher undertaking inductive narrative analysis of the emergent themes in the yarns, with frequent review and input from Aboriginal and non-Aboriginal clinician researchers and our cultural advisory group. Thematic analysis was performed using NVivo 12 software.

 

Results: Yarns were completed with (i) people living with stroke (n=5, 60% female), (ii) and their family and carers (n=5, 80% female) and a (iii) community group (n=6, 100% female). The four themes were: (i) The role of family in stroke recovery, (ii) Trusted relationships with people aware of stroke and support options, (iii) Importance of culturally appropriate interactions with health service, and (iv) Disrespect and racism impacts stroke care access.

 

Conclusion: The role of family, trusted relationships, cultural safety and respect must be considered in improving the post-stroke quality of life for Aboriginal people on Gamilaroi country. These learnings can be used as a framework to inform future work with other regional Australian Aboriginal communities. We will use these and other stakeholder learnings to inform the co-design of culturally safe stroke recovery tools (i.e., a yarning tool) and services with and for the Gamilaroi community.

 

*We recognise the diversity of Aboriginal and Torres Strait Islander people. Recognising this we have used the preferred term ‘Aboriginal people’.