Dr Brooke Conley

Abstract

I acknowledge the Wurundjeri and Yamaji peoples as the Traditional Custodians of the lands where new knowledge detailed in this thesis has been collaboratively created. Thank you also to the community members who participated in this research for sharing their stories.

Background

Arthritis conditions (osteoarthritis [OA], gout, and rheumatoid arthritis [RA]) result in considerable pain and suffering, and disproportionately impact Aboriginal and Torres Strait Islander peoples (respectfully, hereafter referred to as Indigenous peoples), who are more likely than non-Indigenous people 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 Indigenous peoples. Responding to community-identified needs, and priorities outlined in Australia’s National Strategic Action Plan for Arthritis (2019), the aim of my thesis was to inform the co-design of culturally appropriate arthritis education resources for Indigenous peoples.

Methods

Adopting a community-based participatory action research (PAR) framework, Indigenous peoples with lived experience of arthritis conditions were recruited from metropolitan and regional settings in two Australian states – Western Australia (WA) and Victoria (VIC). These individuals participated as co-researchers via two reference groups to prioritise Indigenous voices and knowledge systems.

A four-phase participatory research process was undertaken:

1. Establishment of two community reference groups (CRG)
2. Exploration of beliefs, knowledge, health information needs and preferences of Indigenous peoples living with arthritis through research yarns (culturally appropriate interviews)
3. Synthesis of recommendations in high-quality clinical practice guidelines (CPG) on arthritis care
4. Integration of the lived experience of people with arthritis conditions and CPG recommendations to inform the development of culturally appropriate arthritis education resources.

Findings

Eight CRG members (VIC n=4, WA n=4) met on four occasions over the course of the project. CRG members represented different locations, including metropolitan (n=2) and regional areas (n=2) in VIC and a regional area in WA (n=4) with a range of ages (22–68 years old), and conditions (osteoarthritis n=4; gout n=2; rheumatoid arthritis n=1; and mixed n=1). Thirty people participated in research yarns. The sample included people from different locations (VIC n=9; WA n=21) with a range of ages (22–75 years), and conditions (osteoarthritis n=19; gout n=4; rheumatoid arthritis n=5; and mixed n=2).

This data was collected and analysed to give insight into the experiences and informational needs and preferences of Indigenous peoples with arthritis conditions (research yarn themes). Following a comprehensive search, 57 CPGs were identified, of which 30 were assessed as high quality and provided management recommendations for arthritis conditions. Eighteen CPGs included education recommendations, and these were integrated with research yarn themes.

Synthesis of the two datasets resulted in the following recommendations for the content of education resources: information describing the impact of arthritis on health and wellbeing, when/how to access care, management options (e.g., benefits/risks) and disease knowledge (e.g., prognosis, addressing misconceptions), alongside positive lived experience stories, Indigenous symbols (e.g., flags) and colourful, local art.

Recommendations for delivery of education resources included using formats such as brochures, videos and/or yarning circles facilitated by health professionals, family and/or Indigenous community members. These recommendations were used to co-design three information brochures, one for each arthritis condition (OA, gout and RA), and four videos featuring the lived experiences of four Indigenous people.

Conclusions

Development of these education resources can support Indigenous peoples to better manage their arthritis conditions. Findings can also assist health professionals in delivering high-quality arthritis care and tailored education for Indigenous peoples. Additionally, the robust, community-engaged approach used to generate education recommendations can serve as a template for the creation of other health education resources for Indigenous peoples.

Supervisors

• Dr Samantha Bunzli
• Professor Peter Choong
• Professor Michelle Dowsey

School

Medicine, St Vincent's Hospital

Read the thesis