Who we are and what we did
We are university researchers working on a project exploring experiences of novel research and treatments within cancer care. As part of this we reviewed sociological studies over the last decade to identify the contribution of sociology to understanding cancer and care. To ensure the review was manageable we limited our focus to English language publications about adult cancers and mainstream health-care. Again, to make the review manageable, we didn’t focus on research that including cancer alongside other diseases, articles about childhood or adolescent cancer, and articles about complementary and alternative therapies.
The majority of the research we reviewed was published as journal articles which we mainly identified by a database search (2007 to 2017). Our review included a total of 256 publications.
We identified three themes in the research we reviewed which we went on to analyse in more depth:
• experiences of living with and beyond cancer
• perceptions of risk and responsibility for cancer
• the organisation and delivery of research and clinical care
What we found
Living with and beyond cancer
The largest proportion of articles we reviewed was about living with and beyond cancer. These studies mostly drew on interviews about people’s experiences of cancer diagnosis, treatment and support. Most of the articles were about people’s experiences of one cancer, and most of these were about women’s experiences of breast and/or gynaecological cancers. The majority of studies focused on white Europeans, although some did focus on Black and Minority Ethnic (BME) or religious minorities, mainly in Europe, North America or Australia.
This research showed how a cancer diagnosis and living with and beyond cancer could be disruptive and prompt changes in people’s sense of who they are. However, people have a range of experiences which do not fit neatly into common depictions of people ‘fighting’ cancer or being a cancer ‘survivor’. Sociologists have also explored how people experience cancer care, highlighting the best ways to support a diversity of patients, including recognising and supporting the ‘work’ of being a cancer patient, for example the way people seek information, consult others, make decisions, are involved in self-care, advocacy and support, and indeed, participate in research).
Risk and responsibility
The research we reviewed on risk and responsibilities for cancer also tended to focus on predominantly white women’s experiences, particularly of cancer screening, but it also covered other experiences, for example in relation to men’s risk of prostate cancer. A lot of this work looked at how people’s understandings of cancer risk vary depending on their backgrounds, helping to explain different levels of screening uptake and delays in diagnosis. Other authors explored the problems with health care providers or commentators, for example in the media, over-emphasising the responsibilities of individuals for preventing cancer through their own behaviour. This body of research explored how popular media and screening policies can focus too heavily on individual responsibilities for cancer prevention, without addressing environmental and social elements of cancer risk management, including cultural and language barriers to screening.
Organising research and care
A third set of literatures explored cancer health professionals’ practice, patient involvement in research and care and regulation and policies concerning cancer. Again, the focus was mainly on North America and Europe. This work traced the rise of ‘evidence-based’ medicine and the increasing level of collaboration between researchers and healthcare providers, including via international associations and private-public partnerships involving pharmaceutical companies. The growing role of patients in shaping research agendas was also covered, especially in relation to the tensions around how and when patients are involved, and what kinds of voices are included.
We concluded by noting that, although biomedicine (medical research and care) has advanced apace over the last decade, it is not the sole or even the main driver of improvement in how cancer is experienced or care is provided. Patients’ expectations and involvement have blossomed and transformed over this period, and this in turn changes their experiences of cancer and its risk. Biomedicine also brings with it many questions, not just answers, for patients and providers alike. Sociologists have played an important role in documenting a diversity of experiences and dilemmas that arise from these developments, challenging stereotypes of the typical cancer patient or person coming forward for screening. All this helps to improve services towards better care for a wider range of needs.
Our review also suggests that sociological analysis could extend to include a wider range of perspectives, given that much of it is focused on white European women’s experiences. Sociology has an important part to play in investigating people’s views on, and experience with, a range of cancer research, screening and treatment, and in challenging taken-for-granted assumptions about how best to research with and care for people affected by cancer.
Why is the study important?
This paper questions the widely accepted view that biomedical research is straightforwardly driving improvements in cancer care, demonstrating the importance of social research about living with and beyond cancer in improving cancer services and reducing the risk of cancer. It also underlines the importance of journalists, public commentators and social researchers investigating and taking into account the different experiences and perspectives of a range of people affected by cancer so that their voices can be heard and services shaped to cater for their needs.
The full article is available to read (without charge) here: https://onlinelibrary.wiley.com/doi/full/10.1111/1467-9566.12662
To cite: Kerr, A. , Ross, E. , Jacques, G. and Cunningham‐Burley, S. (2018), The sociology of cancer: a decade of research. Sociology of Health and Illness, 40: 552-576. doi:10.1111/1467-9566.12662.