Interpretation in relation to existing literature

Resilience
Chronically ill patients’ subjective well-being does not have to be affected by new impairments if they develop successful coping strategies to deal with the problems they face in their daily lives [9,20]. Resilience is crucial in this. Huber et al. have already proposed to view health as ‘the ability to adapt and to self-manage’ [20]. Although studies on successful coping with PD emphasize that patients need to accept that they have a chronic disease that will inevitably lead to disabilities and limitations, and that they need to be realistic about their possibilities, yet search for solutions that limit the impact of disabilities and limitations on one’s personal life, symptoms such as apathy and fatigue challenge patients in their resilience [12,13,21–23]. We were, therefore, pleasantly surprised to find out that most patients in our study were able to independently cope with the problems they encountered by making adaptations in their contexts such as a reconstruction of the bathroom or the purchase of an electric shaver. They anticipated and initiated changes in care themselves, not willing to wait until the disease would take over control by forcing the change to happen. This importance of being in control is in line with other literature on coping with chronic diseases and seems to be independent of the type of disease patients suffer from and the type or complexity of change encountered [6,7,24,25].

Expectations
Earlier research on PD patients’ most bothersome symptoms and preferred coping strategies showed that patients have high confidence in medication, physical activity and instrumental support [26]. We found that patients’ expectations of changes in care are closely related to their ability to initiate these changes themselves. Patients who, for example, initiated a modification of their PD medication to find a better balance between the therapeutic effects and side effects had more realistic expectations of the change than patients in whose case the neurologist initiated the same change. This might be related to patients’ level of knowledge of the disease and medication: patients who have better understanding of the way their medication works may be more inclined to initiate a modification themselves and may better comprehend its possible effects. Education might be helpful in this.

Education
A study of patients with multiple sclerosis (MS), for example, showed that patients have more positive experiences with changes in care if they better know what to expect of their disease and treatment strategies [25]. As this can help patients with an unpredictable disease such as MS, the same might be true for patients suffering from the progressive disease with fluctuating expression that PD is [27]. PD patients expressed the need for education on the disease and treatment strategies before [26,28]. Our study adds to this by showing that education on possible solutions that fit into the patient’s context can help community-dwelling PD patients handle the changes in care that will inevitably occur during their disease. To anticipate, to initiate and to independently handle care changes, will contribute to PD patients’ resilience and their experienced quality of life and health [20,23].