Discussion

Main findings
Community-dwelling PD patients encounter a variety of changes in care such as changes in the level of unpaid care, the purchase of tools, modification of pharmacotherapy or admission to hospital. These changes have an impact on patients’ lives, no matter the apparent complexity of the change. Three themes related to patients’ coping influence their experiences of the changes in care and the situation afterward: the ability to anticipate, the ability to initiate and the ability to act independently. Being able to anticipate, initiate and independently handle a change in care contribute to a sense of control and acceptance of the post-change situation. Patients with mild-staged disease, who succeed to initiate a change in care, have realistic expectations of it. However, when a healthcare provider initiates a change without explicitly discussing what can be expected, patients’ expectations are unrealistically high and unmet.

Strengths and limitations
To the best of our knowledge, this study is unique in its focus on community-dwelling PD patients’ coping with the moments changes in care occur. The design of the study has unique features. The monthly visits of the research assistant enabled us to respond quickly to changes in care and to interview patients shortly after these turning points in life, thereby limiting the risk of recall bias. In addition, the information gathered from the patients’ videos was used to tailor the interview topic guide, facilitating in-depth questioning in the interviews [19]. Moreover, our study population varied in sex, age, living circumstances and severity of disease. We succeeded to include two patients with H&Y stage 4; this is unique given the level of disability that comes with such a disease-stage. We, therefore, feel that we were able to make a valid contribution to the knowledge of the changes in care community-dwelling PD patient’s encounter and of their coping with these changes.
However, some limitations need to be taken into account. Most of the included patients had a mild-stage disease. The use of technical equipment and the long duration of data collection might have influenced this. The (expected) burden of making videos was a frequently mentioned reason not to participate in the first place, and one participating patient withdrew early for this reason. Patients willing and able to use technical equipment – such as the patients included in this study – might be more able to initiate and independently handle changes in care. It is possible that non-participants would have encountered more complex care changes that were more difficult to anticipate, initiate or handle independently. Our population, finally, came from a single regional setting in the Netherlands with well-developed specialized PD care. This population was not inclined to consult their GP for PD-related questions, as we know from an earlier study [16]. Patients in different areas might have different care experiences.

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].

Implications for clinical practice
Most of the changes in care the community-dwelling PD patients in our study encountered occurred in the patient’s personal context, and seemed to have more to do with patients’ level of functioning and context-related factors than with disease-specific factors. Therefore, offering support to PD patients to handle changes in care does not have to be limited to neurologists, it can also be provided by healthcare providers with insight into the relevant influencing factors, such as the GP that patients have a long-term relationship with. This is in line with the growing insight that patients’ healthcare needs are more defined by their ability to cope than by their disease [9]. We feel that GPs can fulfil the same supportive role to handle care changes for community-dwelling patients suffering from complex (low prevalent) diseases such as PD as for patients with prevailing conditions such as COPD and DM, although the disease-specific care for these patients is organised differently.
Knowing that PD patients’ coping methods influence their experiences and acceptance of the post-change situation, GPs should focus their support on enabling patients to anticipate, initiate and act independently whenever possible. It is essential for GPs to have knowledge of the disease, treatment and possible care changes to be able to explicitly discuss what can realistically be expected of a care change.