Towards a Sociology of Cancer Caregiving

The lived experience of carers is an element of caregiving often unseen in previous research. Olson's book begins to address this absence by reporting on longitudinal narrative interviews with 32 carers of a spouse with cancer in Australia. After the narrative phase, the carers were asked about their emotional experiences and use of support services. While it is serious, cancer is no longer viewed, according to Olson, as synonymous with death; it is this uncertainty and severity which distinguishes cancer caregiving from other forms of caregiving. The aim of the book is to sociologically examine and unpack the lived experiences of informal carers who look after a spouse with cancer. To extend our understanding of carers’ experiences, sociologies of emotion, time and identity as practice are drawn upon to develop a study of cancer caregiving in a way that is both sociological and participant-driven. The introduction traces the historical and political contexts of care by contrasting Australian policies with those from the UK, the USA and Sweden. Subsequent chapters are presented to reflect a caregiving trajectory, moving from the immediate impacts of the cancer diagnosis to tensions throughout the months and often years of caregiving. It sensibly starts with the title ‘carer’ and what it means for someone to become, specifically, a cancer carer. The second chapter concentrates on loss and grief. Olson claims that some carers experience psychological loss and its associated anticipatory grief, whereas other carers’ experiences of grief centre on the ‘physical loss’ (p. 13) occurring when an asymptomatic but aggressive cancer is diagnosed at the terminal stage. Chapters three and four focus on emotions. The former highlights the emotional responses of the spouse carer to cancer diagnosis. This is a topic, for Olson, that has been popular in psychology but has escaped extensive attention in sociology. According to Olson, denial is one coping strategy used in the short-term whereas in the long-term, carers manage their emotions with respect to the future. In short, the diagnosis is viewed as ‘temporally transformative’ (p. 14) as carers’ assumptions about a joint future with their spouse are disrupted. Emotion management is explored further in the next chapter relating to carers’ shared experiences with their spouse as well as with wider family and friends. Carers spoke of social norms as to how they should feel, as a spouse and carer, and how individuals who are both spouse and carer may feel conflicted. The final empirical chapter explores notions of time and how carers’ experiences were greatly influenced by the extent to which they had control over their time. Those with less control lacked the time to feel, as they were trying to balance multiple roles and viewed emotions as an ‘indulgence’ (p.14) that they could not afford time-wise. In addition, those with less time wanted practical support such as respite and financial help. Spouses with fewer demands on their time often sought out social support as a distraction from their emotions, or to help them interpret them. Such variations in control can go some way to explaining differences in cancer carers’ experiences and their differing support needs. Taken together, the chapters adopt a micro-sociological approach, drawing on concepts such as emotion management and providing insight into carers’ experiences of - among other things - identity, mortality and uncertainty. The macro-sociological approach provided in the concluding chapter could arguably help improve the contexts of caregiving. These approaches combined can help to explore the variation in spouses’ experiences and to develop ways of supporting carers. The book is rich with quotes and descriptive anecdotes that allow the lived experiences of the cancer carers to be firmly positioned at the centre of the narrative. A particularly striking concept is that of ‘indefinite loss’ (p. 44), that is, when there is uncertainty surrounding how a cancer diagnosis will affect a patient's wellbeing and life expectancy. This can place carers in a position in which they are more aware of their own mortality and that of their spouse, as well as developing new priorities and mourning the unrealisability of their future plans. This is a concept developed by the application of a sociological lens to cancer caregiving and there is great scope for further qualitative research to be conducted around this. Carers’ lived experiences were also depicted as involving new forms of loss and normlessness in time, or ‘temporal anomie’ (p. 55), that are responsive to the way a diagnosis is delivered. Moreover, these experiences varied based on each carer's responsibilities and, at times, challenged their emotions, emotion work, and identity as a spouse. Considering these intersections arguably facilitiates the development of a sociology of cancer caregiving, a feat that I believe Olson has skilfully accomplished. With its focus on the emotional and temporal aspects of cancer carers’ lived experiences, viewed through both micro-sociological and macro-sociological lenses, this book presents a new approach of how we, as individuals and members of society, could view cancer caregiving, given the uncertainty and severity of the disease. It will be of benefit to those interested in the sociologies of emotions and time as well as in conceptualisations of identity. Furthermore, its potential implications for policy development for informal carers means it should be read by people working in this area as we begin to develop greater sociological understanding of what it means to be a carer of a spouse with cancer

Grief · Narrative · Narrative inquiry · Psychotherapist · Sociology · Spouse · Family Support in Illness · Psychology · Social Psychology