Purpose: Racialized individuals are underrepresented in stroke research despite reporting unmet recovery needs. Understanding self-management experiences can inform service delivery improvements. In this study, we aimed to explore experiences of stroke self-management and recovery.
Materials and methods: Racialized adults (residing in Canada, self-identifying as non-White or Indigenous) living with stroke and caregivers participated. Photovoice methods involved: 1) initial interview; 2) participants' photographs illustrating important, joyful, and challenging aspects after stroke, strategies for overcoming challenges, and hopes/goals for recovery; 3) individual interview; and 4) focus group. Data were analyzed using thematic analysis.
Results: Fourteen individuals living with stroke and five caregivers participated. Themes highlighted the joy in daily life from cherished relationships and food, mealtimes, and preparing meals. Participants navigated personal and cultural factors in stroke self-management and recovery, and their recovery hopes and goals included maximizing independence and resuming valued activities.
Conclusions: These findings capture the experiences of racialized participants and reinforce the need for individualized and culturally appropriate stroke services to address ongoing challenges. Our findings highlight the importance of understanding what is meaningful after a stroke and how to support engagement in activities and roles that are most important to each person at that particular recovery stage.
Keywords: Stroke; equity; experiences; perspectives; photovoice; qualitative.
Photovoice may be a valuable method for clinicians to understand what activities (e.g., religious prayers, cultural festivals, cultural dance) are important to racialized individuals after stroke and how to best support themClinicians may need to explore individual and cultural beliefs that may not align with stroke best practices, such as inactivity after stroke.