Caring for the caregiver: Exploring the “lived” caregiving and self-care experiences of family caregivers of persons with scleroderma during COVID-19
Scleroderma is a rare autoimmune connective tissue disease that damages skin and internal organs. Although many Canadians with scleroderma live at home with supported care from family, seeing their loved ones struggle with reduced participation in activities of daily living caused by disease symptoms often causes caregivers emotional distress in their caregiving role. Given the need for physical distancing during the COVID-19 pandemic, family caregivers are experiencing increased social isolation (to prevent contracting and spreading COVID-19) and emotional distress with fewer community care resources available. To direct the development of socially inclusive caregiving, self-care, and social support resources for family caregivers of persons with scleroderma, this research will provide an in-depth understanding of family caregivers “lived” experiences with caregiving and self-care during COVID-19. It will also provide evidence of how co-participation in an online scleroderma support group program influences caregiver burden, loneliness, social connection, social support, and self-care behaviour.