Marco Boonstra

5 Marco Boonstra PREFACE I remember it vividly. My first visit to a dialysis unit at Dialysis Center Groningen (DCG). It was January 2015, and I had just started my job as a communication advisor. A nurse explained that the eight patients present in the unit traveled to the dialysis center three times a week. There, a nurse would insert two large needles into their shunt. Subsequently, a machine pumped their blood through an artificial kidney via dialysis lines for three to four hours. It was the only way for these people to filter their blood and survive. It left a strong impression on me! Unfortunately, an artificial kidney does not achieve the effectiveness of real kidneys. Intensive treatment alongside dialysis is needed to prevent patients from experiencing terrible itching, extreme fatigue, nausea, or, worse, death. That is why it is important to be cautious with products containing salt, potassium, phosphate, and, if someone also has diabetes, sugar. Patients also receive vitamins and often multiple medications. Since the kidneys often no longer produce urine, and people cannot urinate anymore, there is a fluid restriction of 800-1000 milliliters per day. I was very aware that this treatment demands a lot from individuals. Imagine having to incorporate a strict diet and a strenuous, exhausting treatment into your life. I admired the resilience of many dialysis patients. On the other hand, I also saw patients who were struggling. They became depressed, disillusioned, or felt overwhelmed by the vast amount of treatment advice. They were merely surviving, as rightfully pointed out in one of The Kidney Foundation’s commercials. How can we better help people who are facing such difficulties? Tanja Lips and Ralf Westerhuis, my former supervisors, encouraged me to seek answers to these questions. This was the start of my cooperation with Andrea de Winter from the Department of Health Sciences at the University Medical Center Groningen. Together, we wrote a research proposal for The Kidney Foundation. When it was approved, we could start our work. I look back with pride on this research, with the aim of better supporting patients with limited health literacy and their healthcare providers. Enjoy reading!

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