Abstract
Currently dominant in medical discourse, the concept of self-management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under-theorised. While self-management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day-to-day management. In all, 22 couples participated in in-depth, semi-structured interviews with each partner interviewed separately (n=44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork.
Highlights
Recent discursive and policy shifts towards the healthy citizen have re-centred the individual as informed, active and responsible for the management of their health (Clarke and Bennett 2012, Jones 2015, Moore et al 2015, Scambler et al 2014, Vassilev et al 2013, Wilson et al 2007)
Illness work Male partners of women with endometriosis described a range of ways in which they performed illness work, which is defined as comprising regimen work, crisis prevention and management, symptom management and diagnosis-related work (Corbin and Strauss, 1985)
We argue that the concept of healthwork retains much explanatory value in the context of chronic illness
Summary
Recent discursive and policy shifts towards the healthy citizen have re-centred the individual as informed, active and responsible for the management of their health (Clarke and Bennett 2012, Jones 2015, Moore et al 2015, Scambler et al 2014, Vassilev et al 2013, Wilson et al 2007). While a small number of studies do discuss men’s involvement in the management of a partner’s illness, this work largely focusses on older people’s experiences (Eriksson and Sandberg 2008, Ribeiro et al 2007, Sandberg and Eriksson 2007) for example in the context of dementia (Baker and Robertson 2008, Baker et al 2010, Neufeld and Kushner 2009), or in experiences of cancer (Gilbert et al 2014, Maughan et al, 2002, Perz et al 2011) This involvement is commonly conceptualised in terms of care and care-giving (Gilbert et al 2014, Ribeiro et al 2007), which tends to position the associated actions as directed at the person with the condition, rather than seeing the tasks involved as a distributed activity
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