Patients with cancer believed that chemotherapy had to “hurt” or “cause side effects” to be effective
What are cancer patients’ perceptions of adjuvant chemotherapy?
30 patients with colon or rectal cancer who were regular, irregular, or 1-time participants in a support group.
Field notes were recorded after participant observation at monthly support group meetings lasting 1.5 hours and events, including a full-day retreat and a colorectal cancer forum. The support group was open to patients, caregivers, supporters, and occasional observers. In-depth semistructured interviews were also conducted with 8 participants, with questions probing topics related to cancer diagnosis, treatments, and the support group. Interviews were recorded and transcribed verbatim; both data sets were analysed for themes.
Side effects of chemotherapy. Many patients had ongoing side effects after active chemotherapy, including chemotherapy-induced peripheral neuropathy, whereas some patients had only a few side effects. A dominant idea expressed in the support groups was the belief that for chemotherapy to be effective, it had to “hurt” or “cause side effects.” When a patient described being admitted to hospital and “almost dying” from the side effects of chemotherapy, another patient remarked “So, it must have been working!” Side effects were typically perceived as “visible evidence” that chemotherapy was effective. In contrast, some patients wondered if the lack of side effects indicated lack of efficacy. Inconsistencies were observed in this regard. For example, a patient who did not have many side effects initially thought that she “must be cured” because she had an “easy time” with chemotherapy; she subsequently had anxiety because she worried that minimal side effects meant that she had not experienced the full curative benefit. Chemotherapy dose. Some patients could not receive chemotherapy as scheduled because of dehydration, low blood counts, side effects, or other complications. Unexpected delays in receiving chemotherapy led to feelings of “stress,” “fear,” or “disappointment” because patients believed they were receiving a lower dose that might be less effective than the full dose. One patient said “You’ve only got one shot so you want to make sure you get a 100% dose as you can’t go back and get the extra 30% later.” Even when patients were assured that treatment delays would not reduce efficacy, they still had doubts. Patients also had different perceptions about oral and intravenous chemotherapy. Patients who received oral chemotherapy wondered if it was less powerful than intravenous chemotherapy. One patient made an analogy to “taking an aspirin.” Another patient felt apologetic for taking oral chemotherapy because she thought that her cancer must not be as bad as those who were taking intravenous chemotherapy, despite awareness of a fellow patient who had almost died because of the side effects of oral chemotherapy.
The idea that chemotherapy had to “hurt” or “cause side effects” to be effective was a pervasive, although contradictory, theme throughout patient dialogue in a cancer support group.
Bell K. “If it almost kills you that means it’s working!” Cultural models of chemotherapy expressed in a cancer support group. Soc Sci Med 2009;68:169–76.
Healthcare professionals know chemotherapy as standard treatment for many cancers, with benefits generally outweighing risks. Yet nurses working with patients receiving chemotherapy are familiar with the ambiguity with which many patients approach their treatment. The study by Bell is an important contribution to the literature investigating patients’ perceptions of chemotherapy, and it is relevant to nurses caring for patients receiving chemotherapy.
It is standard practice for nurses to give patients factual information about drugs they will receive, including side effects, administration details, and treatment scheduling, before and during treatment.1 Common misperceptions and patient-specific concerns are also addressed. The study by Bell highlights that patients do not necessarily understand chemotherapy in terms of the biomedical logic that practitioners use. Patients questioned the efficacy of their treatment in relation to side effects, route of administration, and dose reductions, despite information provided by their oncologist, and even after treatment was completed. Therefore, we cannot underestimate the importance of these issues for patients, nor can we assume that patients’ perceptions of chemotherapy will be influenced simply by presenting factual information.
Although the study by Bell is relatively small, its findings resonate with clinical practice. Oncology nurses will recognise these perceptions as not uncommon but might be surprised at how pervasive and potentially stressful they can be for patients. The findings will lead nurses to more thoughtfully consider how they explore and address patients’ perceptions about chemotherapy. Nurses need to evaluate the content of chemotherapy education as it pertains to efficacy, side effects, route, and dose reductions. Acknowledging and empathising with patients’ perceptions should also be included in both chemotherapy education and follow-up care. Clearly, nurses have a role in addressing these perceptions or myths more systematically, completely, and sensitively, with patients.