ABSTRACT
OBJECTIVE: To understand experiences related to rheumatoid arthritis (RA) care and propose service-level strategies to reduce and mitigate inequities for Black people living in Canada. METHODS: Purposive and respondent driven sampling was used to recruit participants for qualitative interviews to explore population factors relevant to RA care and challenges and facilitators for access to health care services, medications, and enacting preferred treatment plans. Thematic analysis was conducted using the Braun and Clarke method with inductive and deductive coding and critical race theory guiding analysis. RESULTS: Six women and two men with RA, and two women health care professionals, expressed how their racial identity contributed to their understanding of RA, preferences for treatment, and outcome goals. Health care access was influenced by financial limitations and racism, by exclusion, and discrimination, and also by cultural norms in seeking health care and awareness about RA within the Black community. Participants experienced health system fragmentation and were not connected to ancillary supports. Treatment decision-making was influenced by the legacy of oppression and medical experimentation on Black people and the predominance of biomedical approaches emphasized by health care providers. Holistic and cultural approaches, provided in safe, trauma-informed care environments, with flexibility in service models, are desired. Partnerships between arthritis care services and Black community organizations are proposed to promote community awareness and knowledge about arthritis and provide support mechanisms for patients within their community. CONCLUSION: Our study highlights unique considerations based on race and ethnicity and provides suggestions for arthritis care to mitigate inequities for Black people living with arthritis.
Subject(s)
Arthritis, Rheumatoid , Male , Humans , Female , Arthritis, Rheumatoid/diagnosis , Arthritis, Rheumatoid/therapy , Qualitative Research , Health Services Accessibility , Black People , Health ServicesABSTRACT
When health systems are overwhelmed during a public health crisis regular care is often delayed and deaths result from lapses in routine care. Indigenous primary healthcare (PHC) can include a range of programmes that incorporate treatment and management, prevention and health promotion, as well as addressing the social determinants of health (SDoH) and a focus on redressing health inequities. We examined how Indigenous PHC mobilises and innovates during a public health crisis to address patient needs and the broader SDoH. A rapid review methodology conducted from January 2021 - March 2021 was purposefully chosen given the urgency with COVID-19, to understand the role of Indigenous PHC during a public health crisis. Our review identified five main themes that highlight the role of Indigenous PHC during a public health crisis: (1) development of culturally appropriate communication and education materials about vaccinations, infection prevention, and safety; (2) Indigenous-led approaches for the prevention of infection and promotion of health; (3) strengthening intergovernmental and interagency collaboration; (4) maintaining care continuity; and (5) addressing the SDoH. The findings highlight important considerations for mobilising Indigenous PHC services to meet the needs of Indigenous patients during a public health crisis such as the COVID-19 pandemic.
Subject(s)
COVID-19 , Primary Health Care , Humans , Public Health , Pandemics , Continuity of Patient CareABSTRACT
BACKGROUND: Indigenous peoples are overrepresented with chronic health conditions and experience suboptimal outcomes compared with non-Indigenous peoples. Genetic variations influence therapeutic responses, thus there are potential risks and harm when extrapolating evidence from the general population to Indigenous peoples. Indigenous population-specific clinical studies, and inclusion of Indigenous peoples in general population clinical trials, are perceived to be rare. Our study (1) identified and characterized Indigenous population-specific chronic disease trials and (2) identified the representation of Indigenous peoples in general population chronic disease trials conducted in Australia, Canada, New Zealand, and the United States. METHODS: For Objective 1, publicly available clinical trial registries were searched from May 2010 to May 2020 using Indigenous population-specific terms and included for data extraction if in pre-specified chronic disease. For identified trials, we extracted Indigenous population group identity and characteristics, type of intervention, and funding type. For Objective 2, a random selection of 10% of registered clinical trials was performed and the proportion of Indigenous population participants enrolled extracted. RESULTS: In total, 170 Indigenous population-specific chronic disease trials were identified. The clinical trials were predominantly behavioral interventions (n = 95). Among general population studies, 830 studies were randomly selected. When race was reported in studies (n = 526), Indigenous individuals were enrolled in 172 studies and constituted 5.6% of the total population enrolled in those studies. CONCLUSION: Clinical trials addressing chronic disease conditions in Indigenous populations are limited. It is crucial to ensure adequate representation of Indigenous peoples in clinical trials to ensure trial data are applicable to their clinical care.
Subject(s)
Indigenous Peoples , Native Hawaiian or Other Pacific Islander , Canada , Chronic Disease , Humans , New Zealand/epidemiology , Population Groups , United StatesABSTRACT
INTRODUCTION: Arthritis is a leading cause of disability in First Nations communities and is often accompanied by other chronic diseases. Existing care models prioritize accessibility to specialty care for treatment, whereas patient-centred approaches support broader health goals. METHODS: A patient care facilitator model of care, termed "arthritis liaison," was developed with the community to support culturally relevant patient-centred care plans. Following a one-year-long intervention, we report on the feasibility and acceptability of this care model from the perspectives of patients and health care providers. RESULTS: The arthritis liaison served as a bridge between the clinicians and patients, and fostered continuity, helping patients receive coordinated care within the community.
Subject(s)
Arthritis , Health Services, Indigenous , Arthritis/therapy , Humans , Patient CareABSTRACT
PURPOSE: Individuals who experience stroke have a higher likelihood of subsequent stroke events, making it imperative to plan for future medical care. In the event of a further serious health event, engaging in the process of advanced care planning (ACP) can help family members and health care professionals (HCPs) make medical decisions for individuals who have lost the capacity to do so. Few studies have explored the views and experiences of patients with stroke about discussing their wishes and preferences for future medical events, and the extent to which stroke HCPs engage in conversations around planning for such events. In this study, we sought to understand how the process of ACP unfolded between HCPs and patients post-stroke. PATIENTS AND METHODS: Using grounded theory (GT) methodology, we engaged in direct observation of HCP and patient interactions on an acute stroke unit and two stroke rehabilitation units. Using semi-structured interviews, 14 patients and four HCPs were interviewed directly about the ACP process. RESULTS: We found that open and continual ACP conversations were not taking place, patients experienced an apparent lack of urgency to engage in ACP, and HCPs were uncomfortable initiating ACP conversations due to the sensitive nature of the topic. CONCLUSION: In this study, we identified lack of engagement in ACP post-stroke, attributable to patient and HCP factors. This encourages us to look further into the process of ACP in order to develop open communication between the patient with stroke, their families, and stroke HCPs.
