Search

Objective: The aim of this study was to understand and describe the lived experience of Aboriginal and Torres Strait Islander people with osteoarthritis. Methods: Qualitative study guided by cultural security, which ensures that research is conducted in a way that will not compromise the cultural values, beliefs, and expectations of Aboriginal and Torres Strait Islander people. Participants were purposively sampled through the networks of project staff. Research yarns (a cultural form of conversation used as a data gathering tool) were conducted with 25 Aboriginal and Torres Strait Islander adults with self‐reported osteoarthritis in Western Australia and Victoria, Australia. Data were analyzed using a framework approach and presented through composite storytelling (hypothetical stories representing an amalgam of participants' experiences). Results: Two composite stories were constructed to reflect themes relating to beliefs and knowledge, impact, coping, and health care experiences. Common beliefs held by participants were that osteoarthritis is caused by previous physically active lifestyles. Many participants feared for their future, increasing disability and needing a wheelchair. Pain associated with osteoarthritis impacted daily activities, sleep, work, family, and social life and cultural activities. Multidimensional impacts were often experienced within complex health or life circumstances and associated with increased anxiety and depression. Most participants reported negative health care experiences, characterized by poor patient–provider communication. Conclusion: Our findings highlight that osteoarthritis is a multidimensional issue for Aboriginal and Torres Strait Islander people that permeates all aspects of life and highlights the need for integrated, multidisciplinary care that is culturally informed and individualized to patient need. [ABSTRACT FROM AUTHOR]

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., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2024 Elsevier Ltd. All rights reserved, including those for text and data mining, AI training, and similar technologies.)