Orchestrating home

The private space of the home is an important site of health care in most industrialised countries, and rehabilitation following intensive in-hospital treatment largely takes place in domestic settings. Home in this context is implicitly understood by individuals affected by illness (people with illness, family members, friends, carers), health care providers, and policy makers as an a priori entity that naturally provides continuity and stability. This takes for granted that family carers will maintain both therapeutic activities and the sense of ‘being at home’ – and all of the accompanying emotional dimensions – within the home environment. Drawing on ethnographic research with relatively young spousal carers in Victoria, Australia, we explore how the reconstruction of home as a site for post-stroke recovery changed the experiences and meanings given to the idea of home. Home as a therapeutic place depended on constant orchestrating work that reconfigured the physical, symbolic, and practical elements of home. This was not a straightforward or singular process, as tensions arose in trying to integrate the new, post-stroke therapeutic landscape and pre-stroke conceptualisations and lived realities of home life

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’

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’