Spinal cord injury health pilgrimages: “It's a matter of learning getting (through) some breakthroughs”

Abstract Background: People with spinal cord injuries (SCI) experience many transitions between care services. Knowing their emotional, experiential, and social perspectives during these transitions are essential to identify key moments to improve their journeys. The main purpose of this study was to understand the experiences of people with SCI living in Alberta, Canada, during their transitions of care through the analysis of their health pilgrimages. Methods: A virtual ethnographic qualitative constructivist approach was implemented using in-depth interviews conducted via phone or online video platform with 22 people living with SCI in rural and urban areas of Alberta as well as 27 family members and care providers. Results: The health pilgrimages of participants with SCI included key moments across nine distinct stages. We then proposed a critical interpretative framework formed by six statements, which can guide actions to improve the overall experience of people through their health pilgrimages. Using this framework, we identified three general key actions to improve SCI pilgrimages: 1) Understanding SCI from a multiplicity of perspectives, 2) Addressing structural violence, and 3) Co-constructing thriving opportunities. Conclusions: SCI Health Pilgrimages include different types of events characterizing key moments which could further guide improvements on how people experience their journeys living with this chronic condition. We propose six concrete statements that provide direction to create changes to improve SCI health pilgrimages.