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Aletta Jacobs School of Public Health
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Blog Aletta's Talent Network: Giving the patient a voice in research

Datum:22 juni 2021
Marco Boonstra
Marco Boonstra

Marco Boonstra, PhD candidate at the Department of Health Sciences, UMCG.
Time is ticking. The nervous 76-year old kidney patient Jan just took his place at the desk of the nephrologist. He knows that his lab results indicate kidney decline. He also knows he should exercise more and perhaps eat a bit healthier. But how on earth is he going to achieve that. What is healthy food exactly? How will he start living healthier in such a stressful period of his life, now that his wife passed away? And is his nephrologist able to identify Jan’s barriers within the 10 to 15 minutes of consultation time.

The story above is fictive, but illustrates why patients with limited health literacy and healthcare professionals face challenges during medical consultations. In general, patients struggle to understand information, communicate their personal experiences and needs during a consultation, and to apply the medication and lifestyle advices at home. At the same time, the professionals do not always recognize health literacy problems, tend to overestimate patients, provide difficult information or give generic advices without teaching practical skills or overcoming patient-specific barriers.

In our study we aim to overcome the challenges of both kidney patients with limited health literacy and kidney care professionals. When we started in 2018, the literature mainly provided insight in the negative effect of health literacy problems on kidney health, health care access and on the existence of risk behaviors, such as smoking. Based on this, we had no specific idea what our intervention should precisely target to improve both the competences of the patient and the professional.

This is where the patient’s voice became important. In our recently published work, we asked patients in interviews about their experiences regarding diagnosis, treatment, consultations, and the impact of kidney disease on daily life. With this approach, we revealed unexpected barriers from the patient perspective. For example, patients stated kidney disease for them was ‘a value from the lab’; the meaning was not discussed in detail, especially in general practices. Patients doubted what questions they should ask the doctor and what symptoms are important to share. Negative emotions, not seeing risks of unhealthy behaviors, the fact that their kidneys will never get better, and lacking social support were important barriers for patients to start or maintain lifestyle changes.

Male patient, 49 years, hospital care: ‘Now, the care team also starts about alcohol. Well, at some point you are not allowed anything. If you need to quit everything that is bad, I think it is better to commit suicide. Because everything is bad, this is bad, that is bad. Let me smoke my cigarette. I am okay with that.’

Meanwhile, in focus groups, we discussed the experiences of professionals when caring for patients with limited health literacy. We showed them quotations from the patient interviews. The patient’s voice was a great facilitator of the discussion. Professionals reflected upon their approaches and shared problems to recognize and support patients with limited health literacy. Also, they acknowledged their focus was probably too much on providing medical information, instead of asking about daily life barriers or using life aims to motivate patients. They also said their lifestyle advices probably were too much focused on the end-goal, and that they should seek ways to provide stepwise, feasible guidance.

Female, 44 years, general practitioner (FGD): ‘We may be too focused on the final goals and give less attention to the steps in between. For example, we say that someone needs to exercise more, so that he can use the bicycle again and do all kind of activities. And that he thinks: ‘I won’t reach that anyways and I can’t even make it to the end of the driveway.’ Then biking is of course not an option.’   

Based on our qualitative research, we developed the intervention Grip on your Kidneys, in co-creation with patients and healthcare professionals. It aims to improve the patients’ knowledge, communication competences, lifestyle and health, and the professionals’ health literacy competences. The results are expected in 2022. Based on our experiences, we encourage researchers to give patients a more prominent voice, for example in the development of interventions, but also in formulating research questions for future projects. And, please, keep information about your research or questionnaires as simple as possible, to give patients with literacy problems the chance to participate.

This research project is a cooperation between Health Sciences, Dr. Andrea F. de Winter and Prof. Dr. Sijmen A. Reijneveld and Marco Boonstra, and the Department of Nephrology, Prof. Dr. Gerjan Navis and Dr. Ralf Westerhuis.