Progress in preventing, detecting and treating cancer means that survival rates have doubled in the UK in the past 50 years. But the impact on those caring for someone with the disease can still be significant.
Research by academics at Queen’s University Belfast has found that the psychological, physical, social and financial impacts of cancer on informal caregivers, from spouses or partners to adolescents, can be serious. With 1.1 million working adults providing daily support to a loved one with cancer, according to one recent report, more attention needs to be paid to caregivers, they say.
In addition, caregivers may face extra psychological pressure from challenges such as helping cancer survivors tackle discrimination when they are trying to access financial services, including loans, mortgages, health and travel insurance, according to a recent Queen’s study. Research published last year found that on average, up to 25% of those living beyond their cancer in Europe are unable to access and benefit from appropriate financial services because they have to declare their previous cancer diagnosis despite being cured.
“Make no mistake – this is financial discrimination against cancer survivors,” says Prof Mark Lawler, professor of digital health at Queen’s School of Medicine, Dentistry and Biomedical Sciences, who led the research. “I know people who are 17 years post their treatment and they are still having issues. Imagine if adolescents are looking after their parents and then they also have to deal with this financial aspect. There is enough stress for them.”
Lawler is campaigning for a UK-wide initiative to address this inequity, called the Right To Be Forgotten. “The idea is that five years post treatment you are cured so you shouldn’t have to declare your previous cancer diagnosis to a bank, a mortgage agency, an insurance company, or similar. And they shouldn’t be able to ask you.”
This can impact caregivers’ wellbeing. “Our work has demonstrated that if someone is diagnosed with cancer, it’s not only the patient who is affected. If you care for someone with cancer, your health can also suffer,” says Dr Olinda Santin, a reader in supportive cancer care at Queen’s School of Nursing and Midwifery.
“Carers’ and patients’ health are related. If we want to improve outcomes for patients, it’s really important to also take care of the caregiver,” she says. Her team launched cancercaringcoping.com as a forum for advice that is easy to access – and digest. “Carers had told us that sometimes trying to navigate through written material was really tricky. Plus your eye often runs down to the bad news on a leaflet. With videos you can receive the right information at the right point.”
Despite improved detection rates, cancer is still a leading cause of death worldwide, accounting for nearly 10 million deaths in 2022, or nearly one in six, and cases are increasing. Figures from the World Health Organization suggest there will be more than 35m new cancer cases in 2050, a 77% increase from an estimated 20m in 2022.
Prof Martin Dempster is a professor in the School of Psychology. His work focuses on trying to improve the psychological wellbeing and quality of life of those with cancer and those who care for them, which mostly encompasses family members. “Carers [in this context] is a tricky term because people don’t often see themselves as caregivers; they just see themselves as providing support,” he says.
When a carer is anxious, that generates anxiety in the person who has cancer, his research has found. “The two things are connected, because their psychological wellbeing is intertwined. So if the carer feels their life is miserable, and they’re not enjoying life, that will actually have a more negative impact on the person with cancer,” he says.
Oesophageal cancer, which mainly affects men over 60 or 65 years of age, is less well understood than breast or prostate cancer, so it makes people more anxious. It can be particularly hard to cope with the after-effects of removing a tumour from the oesophagus, which include difficulty eating, he says.
“Carers are usually wives. Our research showed they experienced higher levels of anxiety than the patients. Because they aren’t the ones feeling the symptoms, they are forever being vigilant about symptoms and worrying about the patient. The patient knows when things are getting worse and the carer doesn’t,” he says.
Dempster advocates an intervention called acceptance and commitment therapy, which helps people accept difficult feelings and commit to actions that are meaningful. “It’s about encouraging carers to give themselves permission to do something like meeting friends for a coffee, if that is something they value” he says.
Separate research into the impact on adolescents when a parent has cancer found they are often lonely and dealing with overwhelming emotions on their own. In research conducted by one of Dempster’s PhD students, Lydia McKeown, a young person told her: “I don’t have anyone to share with, so it affects my emotional stability a lot.”
Dempster suggests that if someone has teenage children who are the main carers “there needs to be an investigation into their psychological wellbeing and their loneliness, and how it can be resolved and managed”. Creating peer groups for adolescents to meet teenagers in the same situation can be helpful. One teenager who joined such a group told McKeown: “I met a group of kids who had either a mum or dad who was suffering from cancer, so those were the persons I felt comfortable talking about this whole situation with.”
With cancer rates still increasing – NHS figures showed nearly 950 people a day got a diagnosis in England in 2022 – it is clear that more attention needs to be paid to the invisible army supporting them through their illness.
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