Original Study
Perspectives on Parkinson Disease Care in Dutch Nursing Homes

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Abstract

Introduction

Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers.

Methods

Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care.

Results

Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses.

Conclusions

PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders.

Section snippets

Methods

Experiences and unmet needs were explored in 2 ways: (1) interviewing residents and informal caregivers and (2) focus group discussions with health care workers.

Results

Fifteen residents and 15 (unrelated) informal caregivers were included for an interview. Five focus group discussions were organized with 35 participants in total: 2 focus groups with nurses (13 participants) and 3 focus groups with nursing home professionals (22 participants). Characteristics of the participants are displayed in Table 1.

Discussion

This study revealed the following unmet needs for PD care in nursing homes from the perspective of residents, caregivers, and health care workers:

  • Unsatisfactory emotional support and empathy for residents and caregivers

  • Insufficient staff knowledge on PD-related issues

  • Limited cooperation with PD specialists and PD nurses

The next question to be answered is: what can be done to improve PD care in nursing homes? In this section, we give several recommendations based on the 3 major unmet needs found

Acknowledgments

The authors thank all those who contributed to the conduct of this study, especially the investigators Ch. Emonts, A. de Klein, B. van Lange, and L. de Roo, who took part in data collection and data analysis, and the Prinses Beatrix Fonds as the funding source. The Prinses Beatrix Fonds took no part in the content of this article or the conduct of the study.

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  • Cited by (0)

    This study was funded by the Prinses Beatrix Fonds.

    The authors declare no conflicts of interest.

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