Spousal caregivers' experiences of participation in everyday life when living in shifting contexts

Background: To promote health and well-being, and to meet the desires of the growing elderly population to age in place, elderly spousal caregivers need adequate support such as respite care services. More knowledge is needed about elderly spousal caregivers' experiences in relation to participation, which is an aspect of health that remains relatively unexplored for this group. Aim: To explore and describe how elderly spousal caregivers experience and discuss participation in everyday life when living in shifting contexts due to the use of respite care. Method: A grounded theory approach was used during data generation and analysis, which involved repeated focus group interviews with 12 spousal caregivers. Results: Complexity and ambiguity was understood to imbue participation in everyday life. Being in charge of everyday life was challenging for spousal caregivers, and created a need for personal time. Respite care and home care service gave them time, although when interacting with social contexts other issues arose that influenced their own recovery. Conclusions: A holistic 'situation centered' approach that focuses on the elderly couple's life story and needs might capture a wider perspective and enable adequate support that influences their health, well-being, and participation in everyday life.