Cancer risk in marginalised women
A new qualitative research study with women at two women’s centres reveals that their experiences of social adversity profoundly shaped their practices, aspirations and attitudes towards risk, health and healthcare. The study’s authors were Sarah Hanson, Duncan Gilbert, Rebecca Landy, Grace Okolic and Cornelia Guell,.
The research is based on interviews and focus groups with 23 women and seven staff members at the two women’s centres. The findings were grouped under three themes:
- Risk factors in the context of women’s daily lives.
- Risk perception shaped by social circumstances.
- Navigating health systems.
Some of the key findings are summarised below, alongside quotes from some of the women interviewed.
Women’s narratives of risk factors were strongly situated in the circumstances of their very difficult daily lives. For example, material poverty, the use of food banks, living in a hostel and the mental distress of children being removed and prison sentences. The findings suggest that these circumstances represent the conditions and lack of control over their lives that are the sources of their risk, rather than single behaviours.
Issues of poor sleep, eating in the context of mental distress and material deprivation and alcohol use and smoking were all discussed at length. All these factors are linked with different cancers. All twelve of the women who completed a World Health Organisation wellbeing questionnaire reported mental health problems.
In addition to specific health risks, the researched explored women’s risk perception and found that it was shaped by their social circumstances and failings at a structural level. Interviewees’ narratives were framed in fatalistic, indeed from their point of view realistic, terms with a low expectation of living a long and healthy life and seemed to manifest in self-neglect and self-harm.
I found some of the quotes profoundly upsetting:
Because I didn’t have my daughter for a couple of years so no point in cooking for myself. Cooking for her it gives me a purpose for my day. My main meal of the day is probably the only purpose I have. To go out and
get it, get her from school and prepare it.
No. If I get ill and die, I get ill and I die. I didn’t think I’d make it to 40 so any more birthdays is a plus for me … Because I didn’t think I’d make it this far. So every day, I don’t live it as my last, but I’ve done quite well to reach age 40.
I know in the long term smoking isn’t good for me. I know my weight fluctuating up and down, I know my sleep pattern isn’t good for me, I know all these things aren’t good for me but I think because the state of mind that I’m in, I don’t feel mentally strong enough to actually tackle those issues and that’s probably my biggest thing.
The researchers also found that social isolation contributed considerably to these fatalistic views and a general lack of self-esteem.
Navigating health systems
In their interviews, the staff of the women’s centre pointed out that all the women had experienced using and navigating mental health and wellbeing services, which was often a difficult experience, requiring resilience and perseverance. Staff emphasised that women navigated these services and complex processes while largely living in chaotic and overwhelming circumstances that required their own substantial navigation and management. Living with acute financial pressures, for example, that made women think in fortnightly or monthly cycles did not match with a longer term view in health and social care.
The researchers also found that the women had little trust in the health system, having been let down repeatedly by a range of services. Agencies but also health professionals were therefore often regarded with suspicion and not always trusted to provide support and help.
This lack of trust was linked to a reluctance to participate in health screening, so often key to the early identification and successful treatment of cancers.
Perhaps the most challenging conclusion of this research was that the women interviewed had a good understanding of the risks of different health behaviours but the combination of structural disadvantage, low personal expectations and negative experiences of the health system meant that they were at a considerably high risk of cancer than other women. In particular, the women’s very difficult experiences of navigating systems to try to get support for their mental health problems appeared to shape their expectations of the support they might also get for physical health issues.
Screening for early detection of cancer and early reporting of symptoms becomes a marginal concern in the
‘whirlwind’ of everyday life, social circumstances and previous experiences.