Fractured lives : partnering younger people with stroke

Stroke is often sudden and unexpected, but what follows is often a long-term trajectory, marked by uncertainties. The ‘suddenness’ and ‘unexpectedness’ of stroke may be felt particularly by working age individuals and people around them, given that stroke is commonly considered a disease of old age and/or caused by a sedentary lifestyle. Almost all individuals who had a stroke at a ‘younger’ age return home, as they tend to make a better recovery trajectory compared to ‘older’ individuals, but also due to the lack of other appropriate options. Once home, they are usually supported by family members, with their spouse often providing the bulk of support. In my thesis, I explore experiences of spouses of people who have had a stroke whilst in their working age (29-54). Drawing on qualitative data collected through policy document analysis, ethnographic interviews and participant observation in Victoria, Australia, I challenge the notion of ‘carers’ as constructed in current healthcare and policy discourses. While policy and healthcare practice assume that the spouses of people who had a stroke will suddenly become ‘carers’, and that they exist only within the ‘care relationship’ – a self-contained unit – my participants’ accounts illuminate that the everyday lives of ‘carers’ are much more complex. The onset of stroke fractures participants’ assumed coherence in life, and their various social relationships. Their participation in everyday practices of ‘informal care’ was one of many interwoven, yet sometimes conflicting, identity performances. By delineating how their fractured lives, in a network of various relationships, were constantly reformed and restructured, I aim to generate a basis on which service providers, healthcare practitioners, policy makers and members of the wider society can engage in a constructive and critical discussion towards creating a ‘caring society’.