Priorities in healthcare provision in Parkinson's disease from the perspective of Parkinson Nurses: A focus group study

Marlena van Munster; Katarzyna Czabanowska; Timo Clemens; Estera Wieczorek; David Pedrosa; Tiago A Mestre; Johanne Stümpel

doi:10.1016/j.ijnsa.2024.100213

Priorities in healthcare provision in Parkinson's disease from the perspective of Parkinson Nurses: A focus group study

Int J Nurs Stud Adv. 2024 Jun 12:7:100213. doi: 10.1016/j.ijnsa.2024.100213. eCollection 2024 Dec.

Authors

Marlena van Munster^{1

2

3}, Katarzyna Czabanowska^{3

4}, Timo Clemens³, Estera Wieczorek^{5

6}, David Pedrosa¹, Tiago A Mestre⁷, Johanne Stümpel^{1

8}

Affiliations

¹ Department of Neurology, Philipps University Marburg, 35043 Marburg, Germany.
² Institute of General Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany.
³ Department of International Health, CAPHRI Care and Public Health Research Institute, Maastricht University, 6229 ER Maastricht, Netherlands.
⁴ Department of Health Policy Management, Institute of Public Health, Faculty of Health Sciences, Jagiellonian University, 31-066 Krakow, Poland.
⁵ Department of Health Economics and Social Security, Institute of Public Health, Faculty of Health Sciences, Jagiellonian University Collegium Medicum, Krakow, Poland.
⁶ Department of Health Services Research, Faculty of Health, Medicine and Life Sciences, CAPHRI, Maastricht University, Maastricht, Netherlands.
⁷ Parkinson Disease and Movement Disorders Centre, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute, University of Ottawa Brain and Mind Research Institute, Ottawa, ON K1Y 4E9, Canada.
⁸ Center for Life Ethics, University of Bonn, 53113 Bonn, Germany.

Abstract

Background: Through their expertise and diverse skills, Parkinson Nurses are key care providers for people with Parkinson's disease. They are seen as an important profession for person-centered and multidisciplinary care, considered priorities in Parkinson's care delivery. Currently, however, little is known about the priorities that this profession itself defines for the care of Parkinson's patients and how they perceive their own role in the care process.

Objective: To explore the perspective of Parkinson Nurses on care priorities in people with Parkinson's disease.

Design: Qualitative study.

Settings: The iCare-PD study served as the object of study by establishing an interdisciplinary, person-centered and nurse-led care model in several European countries and Canada. The nurses who participated in this model were part of the study.

Participants: Six Parkinson Nurses participated in the study.

Methods: We conducted a thematic focus group, adopting the paradigm of pragmatism to draft an interview guide. The focus group was based on the inspiration card method and followed recommendations for co-creation processes.

Results: Parkinson Nurses define care priorities for Parkinson's in areas of education, multi-professionalism, and need-orientation. They see themselves as mediators and coordinators of care delivery processes.

Conclusions: In line with international recommendations, Parkinson Nurses prioritize key aspects of multidisciplinary and person-centered care. At the same time, however, the nurses also name care priorities that go beyond the international recommendations. It is therefore crucial to integrate the perspective of this important profession into recommendations for the delivery of healthcare for people with Parkinson's.Tweetable abstract How do specialized nurses define priorities for person-centered Parkinson's care? Answers are sought in this qualitative study by @MarlenaMunster.

Keywords: Competence; Healthcare utilization; Nursing; Parkinson Nurse; Parkinson's disease.