OncoAfrica

Proactive, Patient, Reactive?

By Stefanie Harsch, Ph.D.

How do we portray people affected by cancer in Kenya and what are the implications for policy, practice, and research? This “idea of cancer” also influences our understanding of what we call a person with cancer and what to expect from them. Surprisingly, when looking at cancer policy in Kenya, the activity of persons at risk of or with cancer seems to change over the course of cancer care. Should they be proactive in preventing the disease? Should they be receptive patients who merely follow instructions? Or should they be actively managing their survivorship?

Why should we care about the words we use? The words we use to describe cancer patients influence how we perceive and interact with them, as well as the interventions we recommend. They also shape the way we talk about people with cancer in society and tell a story about how they should perceive themselves. This external attribution and the associations and tasks that go with it have a massive effect on the healing process. Therefore, reflecting on how we talk about people with cancer is important. Here, we uncover how the public and cancer patients are described in the Kenyan discourse, and the implications for policy, practice, and research. Since policy strongly influences public perception and discourse, we evaluated Kenya’s three most recent National Cancer Control Strategies and analyzed the words used for cancer patients and the activities assigned to them.

Our analysis of these strategy documents show a trend in Kenya from expanding the vocabulary used for cancer patients (exclusively referred to as such) to a patient diagnosed with cancer (a patient who has cancer, among other things) up to a person with cancer. In 2023, the value of patient-centred care (but not person-centred care) and the role of cancer champions were mentioned for the first time. Moreover, if we look at the activities related to patients at all stages: prevention, early detection, treatment, and palliative care, patients are more reactive rather than proactive in managing their disease.

Interestingly, if we change the perspective and ask cancer survivors to describe their life with the disease, there is a description of the medical care they receive as well as their individual roles in managing the disease. This is not limited to preventive activities such as going for HPV vaccination, screening, or signing up for NHIF. In addition,  we observe individuals’ engagement in following up with the diagnosis, raising money, processing the diagnosis mentally (shock, denial, acceptance, etc.), adjusting dietary behaviour and other lifestyles, communicating and comforting family members, connecting with other cancer survivors, coping with side effects, regaining hope, balancing work, adjusting to the new living conditions, and finding help with daily tasks. Surprisingly, the national cancer control strategies do not capture this active role of patients. The patients’ active role does not diminish but complements the healthcare professional’s role.

So, how should we perceive a person at risk of or diagnosed with cancer? Does the term ‘patient’ refer to someone waiting to receive treatment and for physical improvement? Does ‘reactive’ to the recommendations about physical management of the disease fit better? Is it a ‘proactive’ person? Or do people diagnosed with cancer combine all these features at the same time? Questions of active or reactive roles also arise in the discussion about the self-description of people who have completed their cancer treatment. Are they survivors (as the first strategy suggests), or are they champions (as the third strategy includes), or are they warriors because they fought the war and won?

When talking about people with cancer, it is worth considering two aspects: the power of naming yourself and the activities to perform. First, like the long-needed and widely heard voice of the ‘nothing for us without us’ movement, it is important to acknowledge how people with cancer describe themselves. They refer to themselves as people living with NCDs (or other health problems), and the very term ‘living’ indicates the active role they play. Let us not reduce people to a physical description of their bodies, but let us include the identity of the person, and that cancer affects people physically, mentally, socially, and spiritually, and that there are multiple ways the diagnosed person can respond.

Second, it is of undeniable importance to recognise the active and proactive role played by people living with cancer. Discussions about patient activation or even more cancer literacy can be helpful here. If we acknowledge this active role, we will then explore how policy can add this to the disease management provided by health professionals, how practice can harness it, and how research can give a voice to those affected. Kenya has taken the first promising steps. Let us take heart and move faster and further.