When collaboration falters: Family members’ managerial caregiving

Research problem and specific questions: Around one in ten Swedish people need support from others to help them coordinate their use of health and social care. This role tends to fall on to relatives, who have to step in to help identify, access, monitor and coordinate services.

Family carers have become a vital coordinating actor in the fragmented Swedish health and social care system, and yet little is known about carers’ experiences of providing “managerial care,” nor about its impacts on carers.

Consequently, this project aims to understand family carers’ experiences of providing managerial care and the mechanisms through which managerial care affects carers’ health and well-being.The project’s research questions are: What are family members’ experiences of critical moments in managerial caregiving when limits are set and collaboration falters?

What are the demographic, employment and social situations of family carers who carry out managerial care? How might managerial care account for Swedish women’s vulnerability to unpaid care work?

How does provision of family care, including managerial care, and its impacts on carers change once the cared-for person moves into residential care?

Can diverse managerial caregiving trajectories be identified?Data and method: This mixed methods project reuses 74 interviews with family members of older people in Stockholm County with extensive health and social care needs and will carry out 10 interviews with adult children of overseas-born older people with similar needs.

Thematic analyses of these interviews will be performed to explore diverse managerial caregiving trajectories.

Prospective, quantitative analyses will be carried out using the Swedish Longitudinal Occupational Survey of Health (2008–2024, N=57,104).

The analyses will be sensitive to the gender and educational heterogeneity which exists within the Sweden population.Societal relevance and utilisation: A policy reference group containing policy experts, practice specialists and third-sector representatives will support dialogue between the researchers and wider society at all stages of the project, from planning to dissemination.Plan for project realisation: Over the three-year project period, publications will be prepared for international peer-reviewed journals of good standing, and a range of activities will take place to encourage dialogue with other researchers and society at large.