Indigenous Perspectives and Experiences Regarding Childhood Arthritis in Canada and the United States: A Scoping Review Protocol

Childhood Arthritis refers to any form of arthritis affecting children, with Juvenile Idiopathic Arthritis (JIA) being the most common form (Lites et al., 2023). JIA occurs in children under the age of 16 presenting with arthritis of >=6 weeks duration of unknown etiology (Barnabe et al., 2018; Prakken et al., 2011). It can significantly impair children's physical mobility, growth, development, psychosocial well-being, and overall quality of life due to chronic inflammation, pain, and joint damage (Badarnee et al., 2022; Beeckman et al., 2019). Childhood arthritis also occurs in other systemic rheumatic diseases including systemic lupus erythematosus, juvenile dermatomyositis, systemic vasculitis, and autoinflammatory diseases. The identification of Indigenous children is based on their cultural and/or community ties to Indigenous groups, including First Nations, Métis, and Inuit in Canada (Government of Canada, 2025), and Native American and Alaska Native in the United States (U.S. Department of the Interior, n.d.). These children are at heightened risk for JIA and other related conditions (Barnabe et al., 2018a, 2018b). Studies show that Indigenous people affected by rheumatoid arthritis have experienced more severe outcomes, including greater pain, sleep disturbances, fatigue, and mortality (Barnabe et al., 2018a, 2018b). These exceptional health challenges linked to arthritis are rooted in structural inequities, geographic barriers, and longstanding mistrust in healthcare systems stemming from persistent colonization and intergenerational trauma (Kim, 2019; Vogel, 2015). These structural challenges can profoundly affect how Indigenous families understand, experience, and manage chronic illnesses such as childhood arthritis. These challenges are further exacerbated by the lack of alignment of culturally safe and responsive healthcare approaches that respect and incorporate Indigenous worldviews (Kim, 2019). Despite increasing recognition of the need for Indigenous perspectives and culturally informed care over the recent years (Phillips-Beck et al., 2024), specific scoping reviews on the Indigenous perspectives on the causes and experiences of managing arthritis in Indigenous children are limited. Moreover, mainstream treatment models often prefer Western biomedical approaches rather than including Indigenous knowledge systems, culturally sensitive health approaches, or community-driven health practices that prioritize interconnection, balance, and spiritual growth and understanding (Hitchon et al., 2023). Considering the research gap in experiences, perspectives, and practices related to arthritis in Indigenous children (and their caregivers), and the culture-informed practices used with Indigenous child populations in Canada and the United States, a comprehensive mapping of the existing literature is urgently needed. Although research specifically focused on Indigenous children with arthritis is limited, insights from adult populations offer valuable context. For example, Loyola-Sanchez et al. (2020)’s study explored the experiences of Indigenous persons with arthritis and healthcare providers to inform health service improvements and enhance patient outcomes. On-reserve outreach clinics in Canada emphasized peer support and community building, which helped patients feel validated, reduce isolation, and reclaim their purpose despite chronic illness. Such collective peer models are more effective than individual approaches. Also, patients emphasize a preference for holistic and traditional healing approaches that integrate physical, emotional, and spiritual dimensions of wellness (Loyola-Sanchez et al., 2020). These preferences are often unmet in mainstream systems, leading to mistrust and limited engagement with biomedical treatments (Thurston et al., 2014). The present scoping review aims to synthesize and analyze the reported experiences and perspectives of Indigenous children, parents, and caregivers concerning childhood arthritis in Canada and the United States. By centering Indigenous voices, this review illuminates both the barriers to care and the culturally grounded strategies of resilience and support that families employ. Understanding these lived experiences is essential to informing culturally safe, accessible, and effective care for Indigenous children living with arthritis. This review will shed light on the gaps in existing literature and the direction of development related to research, healthcare policy, and culturally informed care programs. We have specifically focused on Canada and the United States due to their similar healthcare systems and overlapping histories of colonization, residential schooling, and systemic health inequities experienced by Indigenous peoples. Furthermore, while the specific cultures of Indigenous communities vary widely, there are shared perspectives on health that emphasize the elements incorporating balance, community, spirituality, and intergenerational relationships that shape culturally informed care practices in both countries (Gall et al., 2021). Geographical focus allows for a meaningful comparison.

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