Routines of isolation? A qualitative study of informal caregiving in the context of glioma in Australia

Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and feelings of loneliness and isolation among informal caregivers are widespread, and opportunities for quality or meaningful social connectedness are lacking. While considerable research has quantified the causes and effects of loneliness and isolation in informal care contexts, the lived experience of loneliness has received relatively little attention. The aim of this study was to better understand the everyday experiences of a group of home-based informal caregivers of people living with glioma in Queensland, Australia. Drawing on in-depth interviews with 32 informal caregivers, purposively sampled, and recruited through a tertiary hospital, in this paper, we explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Using the framework approach to thematic analysis, we derived four themes: (a) the 'need' to be near the care recipient, and the implications for caregiver mobility; (b) the strong sense of responsibility for care, and the virtues of 'good' caring; (c) experiences of loneliness in the company of others and (d) postponement of social connection and minimising the self. The findings, we argue, are reflective of broader social and moral norms and expectations within experiences of home-based informal care.