Being in control of Parkinson’s disease: A qualitative study of community-dwelling patients’ coping with changes in care

Abstract

Background: Chronically ill patients have to cope with transfers in the level or setting of care. Patients with prevalent disorders such as diabetes mellitus can be supported by their general practitioner (GP) when experiencing such care changes, as the GP already offers them disease-specific care. For community-dwelling patients with low-prevalent diseases such as Parkinson’s disease (PD) – for which disease-specific care is provided by medical specialists – tailoring support to handle care changes requires more insight into patients’ coping.

Objectives: To explore PD patients’ coping with care changes.

Methods: A qualitative interview study was performed in 2013–2015 with a purposive sample of 16 community-dwelling PD patients in the Netherlands. A research assistant visited patients every month to explore if they had experienced a care change. If so, patients were interviewed face-to-face. An inductive approach to comparative content analysis was used.

Results: Patients encountered a variety of care changes such as changes in the level of unpaid care, the purchase of tools, modification of pharmacotherapy or admission to hospital. Being able to anticipate, initiate and independently handle care changes contributes to patients’ sense of control and acceptance of the post-change situation. Patients, who commenced care changes themselves, had more realistic expectations of it.

Conclusion: Community-dwelling PD patients seem to be able to cope with the care changes they face. Offering education to facilitate their anticipation and initiation of changes in care and their ability to act independently, can contribute to patients’ wellbeing. GPs can play a role in this.

Keywords:

• Neurology (Parkinson’s disease)
• general practice/family medicine
• patient empowerment
• qualitative designs and methods (changes in care)

Acknowledgements

The authors would like to thank the patients and the GPs who participated in this study. They also want to thank Frans Derksen for his help in analyzing the first series of interviews, and research assistant Annelies van Dijk for collecting the videos every month.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Additional information

Funding

This study was supported by the Dutch Parkinson’s Disease Association under grant number [2012-V15], and the Health Insurers Innovation Foundation under grant number [2687].