77 Theme 3: Not taking a front-seat role Over time, patients with moderate to severe CKD became aware of the importance of self-management, although they did not always succeed to take a front-seat role and meet the HCP’s expectations. The patients’ negative emotions, limited ability to act on risks and leaving the responsibility to others influenced their self-management negatively. Negative emotions, such as hopelessness, fear and loneliness, were common and caused by the burden of treatment, having multiple diseases, or life events, such as the loss of a partner. As a result, patients said to lack energy or motivation to follow-up on HCP’s advices in all health settings. Daily life itself was already enough to deal with. Patients also shared problems to act on risks. For example, they were unaware of noteworthy symptoms, such as fatigue, and treatment risks. Some patients had past experiences that made them more alert. For example, a patient was hospitalized because of medication side effects. Since that moment, she read medication prescriptions. Additionally, many patients left the responsibility for self-management to others. Partners or family members monitored their diet, prepared medication, and asked questions during consultations. Theme 4: Maintaining change Even when patients, on the short-term, took a front-seat role, maintaining selfmanagement was difficult. Patients resigned to self-management because they felt to have made too many adaptations in their lives already. The joy of food, smoking, or alcohol helped to enjoy or deal with life and therefore they reverted to old habits. Or, they were unable to combine lifestyle changes for multiple diseases. For example, patients said it was difficult to eat less sugar and salt when they had diabetes and CKD. As a result, their self-management had shortcomings. Older patients believed ‘age comes with flaws’ and were unwilling to adapt habits much at this point in life.
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