title: Perspectives on Parkinson disease care in Dutch nursing homes.
abstract: BACKGROUND
  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.
authors.affiliation: Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands. Electronic address: anoukevanrumund@gmail.com.
authors.forename: Anouke
authors.initials: A
authors.lastname: van Rumund
authors.affiliation: Atrium Medical Center, Department of Neurology, Heerlen, The Netherlands.
authors.forename: Nico
authors.initials: N
authors.lastname: Weerkamp
authors.affiliation: Atrium Medical Center, Department of Neurology, Heerlen, The Netherlands.
authors.forename: Gerrit
authors.initials: G
authors.lastname: Tissingh
authors.affiliation: Department of General Practice, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
authors.forename: Sytse U
authors.initials: SU
authors.lastname: Zuidema
authors.affiliation: Department of Primary and Community Care: Center for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Raymond T
authors.initials: RT
authors.lastname: Koopmans
authors.affiliation: Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands; Scientific Institute for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Marten
authors.initials: M
authors.lastname: Munneke
authors.affiliation: Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Petra J E
authors.initials: PJ
authors.lastname: Poels
authors.affiliation: Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Bastiaan R
authors.initials: BR
authors.lastname: Bloem
mesh_terms: D000368:Aged; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009426:Netherlands; D009735:Nursing Homes; D010300:Parkinson Disease / Q000451:nursing*; D011369:Professional-Patient Relations; D036301:Qualitative Research; D011787:Quality of Health Care
keywords: Parkinson disease; nursing homes; qualitative research; quality of care