Exploring networks of care in the end-of-life context through eco maps: feminist perspectives on caregiving in between family, community, and professionals in Sweden

Abstract

ABSTRACT More complex understanding of relationality in care networks around patients with life-limiting illness and their significant others is needed. This is the case not only because care is distributed unequally along gendered lines, but also because of the changing landscape of care in welfare states where families and communities are made more self-responsible. This study examines everyday experiences of support from six patients and nine significant others admitted to specialized palliative care in Sweden using a transdisciplinary approach uniting ‘eco maps’ and interviews. Findings indicate that while community can offer meaningful support, the ability of participants to accept that support was mixed. While professionals were welcomed in alleviating the individual and familial struggle of illness and loss, friends were seldom expected to help practically or emotionally. This was especially true for female informal caregivers, who tended to take on the emotional burden of caregiving alone. However, male patients expressed how increasing frailty opened up possibilities for caring masculinities where friends took on greater practical and emotional significance in their lives. This study contributes to field related and feminist literature by elaborating on care as an extended and relational practice shared and counter-balanced between multiple actors with differential roles and values.