Abstract
One of the most notable things about Rebecca Olson’s book on cancer caregiving is how germane the work is to a wide range of subfields in sociology. Towards a Sociology of Cancer Caregiving: Time To Feel centers on the experiences of 32 Australian spouses caring for a loved one stricken with cancer, but the story manages to bring in the sociology of emotions, life course theory, identity theory, theories of grief and bereavement, discussions of anomie, and discussions of medical uncertainty, illness experience, and doctor-patient communication. The author integrates this patchwork of ideas seamlessly into her analysis and the result is a beautifully written qualitative account of what it means (and feels like) to care for someone with cancer. Olson has also accomplished something that many sociologists struggle to do: She has made her work relevant to health-care practitioners who regularly interact with and support family caregivers. The book offers realistic, empirically informed recommendations for improving the lives of cancer caregivers (or “carers,” as they are known in Australia) and does so without sacrificing sociological richness. In my view, this book is an impressive work of public medical sociology.
A major strength of Olson’s research is her decision to interview caregivers more than once, at different points in their caring “careers.” Not only does this longitudinal approach lend greater validity to the accounts offered in the book, but it also helps illustrate the variability in the caregiving experience and how experiences change over time. Too often, care work is caricatured (in society as well as in the literature) as a saintly sacrifice or, alternatively, as a set of burdensome tasks. Of course, in reality, care work (paid or unpaid) is both of these, as well as many things in between. Olson eschews simplistic interpretations of care work and encourages us to look more carefully at the context and conditions of care when rendering our scholarly assessments.
The fact that Olson interviewed her respondents at different junctures in their caring trajectories allows her to capture what it is like for patients and caregivers to live the reality of “the unknown” for months and sometimes years. As Olson points out, cancer is no longer a death sentence for many people, and yet all patients and carers must grapple with the possibility of death. The result? Lives fundamentally transformed by uncertainty. Olson deftly grapples with the idea of uncertainty and offers us two concepts: indefinite loss and temporal anomie. Building on the concept of anticipated grief—wherein a person begins to grieve the loss of a loved one before they actually die—Olson suggests that when a cancer prognosis is unknown, caregivers are stuck in “limbo” for extended periods of time, unsure of whether, when, and how their loved one will die. Their grief is characterized by a sense of indefinite loss.
Given this protracted period of uncertainty and grief, Olson also suggests that time is constructed differently for cancer caregivers, such that they cannot contemplate future life goals or decisions. Respondents in the book talk about hesitating to make financial arrangements, make career decisions, or contemplate vacations because they are unsure of how to forecast (or even if they should forecast) a life without their loved one. This temporal anomie means carers must live in the present moment, a reality that has its benefits (e.g., appreciating life as it comes; relinquishing control) but also comes with a heavy share of distress and burdens. Olson argues that indefinite loss and temporal anomie have largely been ignored by medical providers and psychological support staff and that greater attention should be paid to the role uncertainty—in all its dimensions—plays in the life of cancer caregivers and their families.
Olson’s work also disabuses us of the idea that cancer caregivers are prone to a state of denial about the fate of their loved one (a critique often levied by clinicians). She suggests that caregivers wittingly engage in emotion work to promote feelings of stoicism, tenacity, and perseverance in their ill spouses. Rather than viewing this as an expression of denial, Olson shows that such emotion management is a form of coping that is rooted in two structural realities. First, carers receive clear messages from friends, family, medical providers, and even the media that living with cancer is a “fight.” Not surprisingly, then, caregivers and patients adhere to and promote feeling rules that mirror these social dictates, especially when they are presenting a public face. Second, Olson shows that the nature and quality of interaction with medical staff, especially at the point of diagnosis/prognosis, profoundly shapes 1) what patients and carers understand about the illness trajectory and 2) the kind of emotion work caregivers engage in. As a direct result of interactions with medical professionals, carers are left to cope with bleak prognoses or, more often than not, partial disclosures about terminality.
It is not surprising, under these conditions, that caregivers engage in emotion work that relies on widely accepted and available tropes, such as “fighting,” “battling,” and “winning” vis-à-vis cancer. I think it would behoove every medical professional working with cancer patients and their families to read Olson’s book, paying particular attention to her discussion of caregiver/patient denial and coping. Emotions scholars will be equally pleased with this aspect of the book, since Olson demonstrates clearly that the emotions and emotion management surrounding cancer care are a “result of many interactions, internal, financial, social, medical, and otherwise” (p.73).
Olson also tackles head-on the debate (mostly in the UK and Australia) about the nomenclature of caregiving. Some carers reject the term “carer,” arguing that their care work is an extension of their roles and responsibilities as family. Others strategically embrace the title of carer, in large part because doing so opens the door to a range of health and support services from the state. Olson transcends this debate, arguing that further research is needed to “understand the processes and circumstances under which caregiving leads to identification as a carer or rejection of the carer identity” (p.20).
Asking her respondents to discuss their views on the matter, Olson finds that when reciprocity is maintained in the spousal relationship (i.e., the carer still benefits in some way from the bond), carers are inclined to disavow the label of carer. But when meaningful interactions diminish (because, say, a loved one is mentally incapacitated), respondents are more likely to embrace the identity of carer. Olson suggests we conceptualize cancer and marriage as “two competing figured worlds” (p.31), within which caregivers come to define themselves over time. The important point here is that caregivers’ perceptions of themselves often shift, as the figured world of marriage diminishes and the figured world of cancer becomes more salient.
Towards a Sociology of Cancer Caregiving offers a sensitive and moving portrait of cancer caregiving while also reminding us that caregiving is a social, dynamic reality, shaped by time, uncertainty, diagnosis/prognosis, disease trajectories, and interaction with medical providers. There are moments in the book where the claims could be tempered with recognition of the small sample size, but overall the insights in this book constitute a significant contribution to medical sociology, the sociology of emotions, and the literature on care work.