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The beliefs kidney patients have about their illness, treatment and the support they experience, are important for their sense of autonomy and self-esteem. Even to keep their job. It may be possible to adjust these beliefs by means of a group course, according to PhD research of Daphne Jansen that was conducted at NIVEL.
“People with chronic kidney disease do not often feel that they can do the things they like in daily life. It’s important to support them at an early stage of the disease. In order to maintain their job, but also regarding other daily activities,” states Daphne Jansen. Patients with kidney disease perform paid work less often compared to people in the general population. They are also less active in other domains of life. It is particularly difficult to combine dialysis treatment with a job and other daily activities. Only a quarter of the patients on dialysis have paid jobs and many patients stop working before they start with dialysis treatment.
Patients with positive beliefs about their illness and treatment feel more autonomous and have a higher self-esteem. For example, because they experience control over their illness and they can fit the treatment into their daily lives. Whether a patient has a paid job seems to have a similar association with these beliefs. Support from family or social environment also plays an important role, yet ‘overprotection’ is counterproductive. “It’s important that support matches the needs of patients and increases patients’ feelings of autonomy. Furthermore, we found that the beliefs of patients varied throughout the illness trajectory. This suggests that these beliefs may be influenced.”
Jansen and fellow researchers therefore developed the course “Sterk door werk” (Working power). This course helps patients with kidney disease – together with their friends and family – to fit the illness into their daily lives. In order to strengthen helpful beliefs and resolve misconceptions, patients receive information from experts on combining a job and their disease and are given examples of kidney patients who have managed to stay active. At the same time the researchers also focus on the social environment. So that family, doctors and employers are less patronizing, and support patients’ wishes thereby offering opportunities to stay in control of their lives. The course also provides a practical plan to – despite the restrictions associated with the disease – stay active and continue working. The course has been tested on feasibility and organised in dialysis centres. Participants, course leaders and health professionals involved are positive.
“Little structural attention has yet been paid to psychological factors, such as personal beliefs and attitudes of the social environment. While these do play a role in living and working with chronic kidney disease,” states Daphne Jansen. “We expect that patients attending the course, as well as their friends and family, become aware of available opportunities to stay active and that they learn how to continue their job and leisure activities in a way that suits them. And by doing so, keep a grip on their lives.”
- Nierstichting Nederland
- Stichting Instituut Gak
- Ministerie van OC&W
- Hans Mak Instituut / LUMC
- Nierpatiënten Vereniging Nederland
- Vereniging Maatschappelijk Werk Nefrologie