Astrid Stephan
Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals
Stephan, Astrid; Afram, Basema; Koskenniemi, Jaana; Verbeek, Hilde; Soto, Maria E.; Bleijlevens, Michel H.C.; Sutcliffe, Caroline; Lethin, Connie; Risco, Ester; Saks, Kai; Hamers, Jan P.H.; Meyer, Gabriele; Guiteras, Anna Renom; Sauerland, Dirk; W�bker, Ansgar; Bremer, Patrick; Beerens, Hanneke C.; Zwakhalen, Sandra M.G.; Ruwaard, Dirk; Ambergen, Ton; Hallberg, Ingalill Rahm; Emilsson, Ulla Melin; Karlsson, Staffan; Bokberg, Christina; Challis, David; Jolley, David; Tucker, Sue; Bowns, Ian; Roe, Brenda; Burns, Alistair; Leino-Kilpi, Helena; Suhonen, Riitta; Viitanen, Matti; Arve, Seija; Stolt, Minna; Hupli, Maija; Tiit, Ene Margit; Leibur, Jelena; Raamat, Katrin; Armolik, Angelika; Toivari, Marjatta Teija Tuula; Zabalegui, Adelaida; Navarro, Montserrat; Cabrera, Esther; Alvira, Carme; Farre, Marta; Miguel, Susana; Soto, Maria; Milhet, Agathe; Sourdet, Sandrine; Gillette, Sophie; Vellas, Bruno
Authors
Basema Afram
Jaana Koskenniemi
Hilde Verbeek
Maria E. Soto
Michel H.C. Bleijlevens
Caroline Sutcliffe
Connie Lethin
Ester Risco
Kai Saks
Jan P.H. Hamers
Gabriele Meyer
Anna Renom Guiteras
Dirk Sauerland
Ansgar W�bker
Patrick Bremer
Hanneke C. Beerens
Sandra M.G. Zwakhalen
Dirk Ruwaard
Ton Ambergen
Ingalill Rahm Hallberg
Ulla Melin Emilsson
Staffan Karlsson
Christina Bokberg
Professor DAVID CHALLIS David.Challis@nottingham.ac.uk
Researcher (Co-Investigator)
David Jolley
Sue Tucker
Ian Bowns
Brenda Roe
Alistair Burns
Helena Leino-Kilpi
Riitta Suhonen
Matti Viitanen
Seija Arve
Minna Stolt
Maija Hupli
Ene Margit Tiit
Jelena Leibur
Katrin Raamat
Angelika Armolik
Marjatta Teija Tuula Toivari
Adelaida Zabalegui
Montserrat Navarro
Esther Cabrera
Carme Alvira
Marta Farre
Susana Miguel
Maria Soto
Agathe Milhet
Sandrine Sourdet
Sophie Gillette
Bruno Vellas
Abstract
© 2014 John Wiley & Sons Ltd. Aims: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. Background: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. Design: Cross-sectional survey in eight European countries (November 2010-January 2012). Methods: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). Results: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. Conclusion: Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.
Citation
Stephan, A., Afram, B., Koskenniemi, J., Verbeek, H., Soto, M. E., Bleijlevens, M. H., …Vellas, B. (2015). Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals. Journal of Advanced Nursing, 71(6), 1392-1404. https://doi.org/10.1111/jan.12493
Journal Article Type | Article |
---|---|
Acceptance Date | Jul 5, 2014 |
Online Publication Date | Aug 4, 2014 |
Publication Date | 2015-06 |
Deposit Date | Jul 15, 2020 |
Journal | Journal of Advanced Nursing |
Print ISSN | 0309-2402 |
Electronic ISSN | 1365-2648 |
Publisher | Wiley |
Peer Reviewed | Peer Reviewed |
Volume | 71 |
Issue | 6 |
Pages | 1392-1404 |
DOI | https://doi.org/10.1111/jan.12493 |
Public URL | https://nottingham-repository.worktribe.com/output/3751937 |
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