What creates trust in breast cancer patients? And what can cause them to lose it? In a study that followed twelve patients from diagnosis to the end of their treatment, nursing scientists discovered different answers to these questions.
What creates trust in breast cancer patients? And what can cause them to lose it? In a study that followed twelve patients from diagnosis to the end of their treatment, nursing scientists discovered different answers to these questions.
Trust is an enigmatic term. We appear to have an intuitive understanding of it — most four-year-olds can usually tell whether the person they're dealing with is trustworthy. Yet it is difficult to define the term clearly. A research paper by Andrea Kobleder and her team from the Institute of Health Sciences at the University of Applied Sciences in St. Gallen contains the observation: "Trust is the optimistic belief, in a moment of vulnerability, [...] that another party will act in your best interest despite uncertainty."
In a study funded by the Swiss Cancer Research Foundation, Kobleder and her team followed the treatment journey of twelve breast cancer patients, from diagnosis through to follow-up appointments approximately one year after the end of the treatment. The researchers conducted regular interviews with the participants and asked them to complete questionnaires. They also gave the participants a tablet so that they could make notes and send text messages to the researchers.
"Many of the messages captured in-the-moment impressions, which add a layer of detail to the information gathered from interviews and questionnaires," says Kobleder. "We created these digital diaries as a data collection tool. Only afterwards did we realise that they also act as a kind of intervention. At the end of the study, many of the participants thanked us for giving them the opportunity to write down how they felt. They found it helpful."
The digital diaries also helped the researchers because they allowed them to see how the confidence of the participants developed over time. At first, the women had to come to terms with the shock of the cancer diagnosis, but when they started treatment, they generally had a great deal of confidence in the healthcare system. One particular message stands out for Kobleder. "I can't cut the cancer out myself," she wrote, "so I have to rely on other people, and I have to trust them."
Many participants viewed the treatment as a necessary path to survival, one that meant giving up some control over their bodies. They described surrendering to the treatment's machinery, describing it as "the merry-go-round that never stops". Kobleder mentions another powerful metaphor used by a different participant. "She felt she was on a conveyor belt, with her head held in place by a suction cup while parts of her body were periodically unscrewed or removed." It sounds frightening, but most people felt reassured by the hospital's well-rehearsed procedures. "The machinery also gives a sense of security," says Kobleder.
The study shows that participants felt particularly vulnerable at certain times. Predictably, the transitions between treatment phases were especially challenging. Once they had completed chemotherapy, for instance, they had to adapt to a new environment and treatment team when they began radiotherapy. "The cogs in the fragmented system don't always work together," says Kobleder. "This lack of cohesion can breed mistrust. For example, several participants reported receiving conflicting information from different sources."
Conflicting information isn't necessarily incorrect, however. The treatment plan discussed by the medical specialist with the patient might change after the hospital's tumour board meeting. Oncologists routinely adjust the duration of chemotherapy, but a significant change – like reducing the treatment plan from six months to just two – can be a shock for patients," says Kobleder. "We often underestimate the significant knowledge gap between healthcare professionals and patients."
The researchers wanted to know what made the study participants more confident. For example, the participants' confidence increased when they felt that they were seen not just as a breast cancer patient, but also as an individual. Patients also responded positively to healthcare professionals who communicated honestly, especially when they openly acknowledged that they didn't have an answer. The research findings suggest ways of incorporating more trust-promoting elements into treatment. "You don't need massive changes to the system," says Kobleder. "In most cases, small changes to people's attitudes are enough."
Project number: KFS-5113-08-2020
