Integrating evidence from lived experience of Aboriginal people and clinical practice guidelines to develop arthritis educational resources: a mixed-methods study

Brooke Conley; Jane Linton; Jonathan Bullen; Ivan Lin; Rachel Toovey; Jennifer Persaud; Penny O'Brien; Ryan Prehn; Janet Bromley; Nola Gregory; Trevor Pickett; Lennelle Papertalk; Charmaine Green; Wanda Flanagan; Samantha Bunzli

doi:10.1016/S2665-9913(24)00233-9

Integrating evidence from lived experience of Aboriginal people and clinical practice guidelines to develop arthritis educational resources: a mixed-methods study

Lancet Rheumatol. 2024 Dec 5:S2665-9913(24)00233-9. doi: 10.1016/S2665-9913(24)00233-9. Online ahead of print.

Authors

Brooke Conley¹, Jane Linton², Jonathan Bullen³, Ivan Lin⁴, Rachel Toovey⁵, Jennifer Persaud⁶, Penny O'Brien⁷, Ryan Prehn⁸, Janet Bromley⁹, Nola Gregory¹⁰, Trevor Pickett¹¹, Lennelle Papertalk¹¹, Charmaine Green¹¹, Wanda Flanagan¹¹, Samantha Bunzli¹²

Affiliations

¹ Department of Physiotherapy, The University of Melbourne, Melbourne, VIC, Australia. Electronic address: [email protected].
² Physiotherapy Department, Clarence Valley Health Service, Grafton, NSW, Australia; University Centre for Rural Health, School of Health Sciences, The University of Sydney, Lismore, NSW, Australia.
³ Office of the Deputy Vice-Chancellor Academic, Curtin University, Perth, WA, Australia; Telethon Kids Institute, Perth, WA, Australia.
⁴ Western Australian Centre for Rural Health, The University of Western Australia, Geraldton, WA, Australia; Geraldton Regional Aboriginal Medical Service, Geraldton, WA, Australia.
⁵ Department of Physiotherapy, The University of Melbourne, Melbourne, VIC, Australia.
⁶ Arthritis and Osteoporosis Western Australia, Perth, WA, Australia; Physiotherapy Department, Sir Charles Gairdner Hospital, Nedlands, WA, Australia.
⁷ Department of Surgery, St Vincent's Hospital Melbourne, The University of Melbourne, Melbourne, VIC, Australia.
⁸ Department of Surgery, St Vincent's Hospital Melbourne, The University of Melbourne, Melbourne, VIC, Australia; Project Community Reference Group, Melbourne, VIC, Australia.
⁹ Project Community Reference Group, Melbourne, VIC, Australia.
¹⁰ Project Community Reference Group, Geraldton, WA, Australia.
¹¹ Western Australian Centre for Rural Health, The University of Western Australia, Geraldton, WA, Australia.
¹² Department of Physiotherapy, The University of Melbourne, Melbourne, VIC, Australia; School of Health Sciences and Social Work, Nathan Campus, Griffith University, Brisbane, QLD, Australia; Physiotherapy Department, Royal Brisbane and Women's Hospital, Brisbane, QLD, Australia.

PMID: 39647492
DOI: 10.1016/S2665-9913(24)00233-9

Abstract

Background: Globally, osteoarthritis, rheumatoid arthritis, and gout (arthritis conditions) result in considerable pain and suffering and disproportionately affect First Nations Peoples, who are more likely than non-First Nations Peoples to have an arthritis condition and to experience a higher burden of disease. Access to culturally appropriate health information supports the health and wellbeing of First Nations Peoples. The aim of this study was to identify evidence-based, culturally appropriate recommendations to inform the development of arthritis educational resources for Aboriginal and Torres Strait Islander Peoples (First Nations Peoples in Australia).

Methods: This mixed-methods study using community-based participatory action research had three phases: interviews (research yarns) with Aboriginal people to explore their informational needs and preferences for arthritis educational resources; systematic reviews and synthesis of education recommendations from high-quality arthritis clinical practice guidelines; and integration and interpretation of datasets from the first two phases. Details of the three systematic reviews have been published previously. We only included clinical practice guidelines that met our inclusion criterion of high quality, assessed using the Appraisal of Guidelines for Research and Evaluation II instrument.

Findings: Between Dec 24, 2020, and Nov 2, 2022, 30 Aboriginal people participated in research yarns. 21 (70%) participants were female and nine (30%) were male, with median age 60 years (range 22-75). All participants identified as Aboriginal and no participants identified as Torres Strait Islander. Research yarn data was combined with education recommendations from 18 clinical practice guidelines. Synthesis of the two datasets generated the following recommendations for inclusion in educational resources: the impact of arthritis on health and wellbeing, when and how to access care, management options (eg, benefits and risks), and disease knowledge (eg, prognosis and addressing misconceptions). In addition, educational resources should be jargon-free and include positive lived experience stories, flags, and colourful local art. Educational resources should be created by Aboriginal people and delivered by health professionals, family, or Aboriginal Community members in the form of brochures, videos, or yarning circles.

Interpretation: The recommendations from this study will inform the development of arthritis educational resources for Aboriginal Peoples. The findings can also support health professionals to deliver evidenced-based arthritis care to Aboriginal Peoples. Internationally, a community-based participatory action research approach can be applied to develop educational resources for First Nations Peoples and communities.

Funding: Australian Commonwealth Government through Arthritis Australia.