Background/Purpose:

Outcome inequities exist for Indigenous patients in Canada with inflammatory arthritis conditions. Primary health services innovations that better support urban Indigenous patients exist, but these innovations have not been adopted broadly by specialty care systems. To inform specialty care systems and providers so as to better respond to urban Indigenous patient needs, develop care alliances with patients and primary health service providers, and ultimately resolve care gaps, we conducted a qualitative study using novel patient-driven methodology to identify experiences in accessing and navigating the health system for inflammatory arthritis care.

Methods:

The Patient and Community Engagement Research Program (PaCER) method is a qualitative research method led by patients using an iterative three phase process: Set, Collect and Reflect. The Reflect phase was completed with urban First Nations and Métis patients engaged in a multidisciplinary urban Indigenous primary health service with integrated rheumatology specialty services using an adapted interview guide and referring to the themes identified in a parallel non-First Nations and non-Métis inflammatory arthritis patients study. Experiences and challenges in: 1) Initial access to rheumatology care; 2) Ongoing access to rheumatology care; 3) Information about the disease and resources for those living with arthritis; 4) Fear of the future; and 5) Collaborative and continuous care; were explored. Multiple rounds of coding, theme determination and review were conducted to ensure authentic representation of patient experiences, and full incorporation of Indigenous perspectives in the research.

Results:

Eleven First Nations and Métis women with inflammatory arthritis representing a spectrum of recent-onset to established disease, and ranging from 39-70 years of age, consented to be interviewed. Access to care, continuity of care and collaboration were facilitated by a supportive and culturally safe environment that addressed care needs, assisted patients in navigating complex networks of primary and tertiary providers and social services, and that recognized the value in offering traditional approaches to health and wellness. Despite the overall positive experiences reported by participants, there was still tension and discomfort around pharmacotherapy for inflammatory arthritis. Experiences of incomplete effect, occurrence of side effects and fear of addiction were shared.

Conclusion:

The results draw attention to the need for specialty care system change to build on culturally responsive models of care that already exist. Initial access and continuity of specialty care can be facilitated with collaboration between primary and specialty care in an urban Indigenous health service model. Enhanced patient education and resource coordination is required, as is support for decisions around pharmacotherapy to optimize inflammatory arthritis management.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/experiences-of-urban-first-nations-and-metis-patients-accessing-and-navigating-the-health-system-for-inflammatory-arthritis-care/