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  • Andersen, Peter M.,1962-Umeå universitet,Neurovetenskaper (author)

Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden

  • Article/chapterEnglish2022

Publisher, publication year, extent ...

  • 2021-06-30
  • Taylor & Francis,2022
  • printrdacarrier

Numbers

  • LIBRIS-ID:oai:DiVA.org:umu-186171
  • https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-186171URI
  • https://doi.org/10.1080/21678421.2021.1936064DOI

Supplementary language notes

  • Language:English
  • Summary in:English

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  • Subject category:ref swepub-contenttype
  • Subject category:art swepub-publicationtype

Notes

  • Background: During the course of amyotrophic lateral sclerosis (ALS), patients and their families are faced with existential decisions concerning life-prolonging and -shortening measures. Correct anticipation of patient’s well-being and preferences is a prerequisite for patient-centered surrogate decision making.Methods: In Germany (N = 84), Poland (N = 77) and Sweden (N = 73) patient-caregiver dyads were interviewed. Standardized questionnaires on well-being (ADI-12 for depressiveness; ACSA for global quality of life) and wish for hastened death (SAHD) were used in ALS patients. Additionally, caregivers were asked to fill out the same questionnaires by anticipating patients’ perspective (surrogate perspective).Results: Caregivers significantly underestimated patients’ well-being in Germany and Poland. For Swedish caregivers, there were just as many who underestimated and overestimated well-being. The same was true for wish for hastened death in all three countries. For Swedish and Polish patients, caregivers’ estimation of well-being was not even associated with patients’ responses and the same was true for estimation of wish for hastened death in all three countries. Older caregivers and those with the most frequent encounter with the patient were the closest in their rating of well-being and wish for hastened death to the patients’ actual state, while caregivers with chronic disease him/herself were more likely to underestimate patient’s well-being.Discussion: Despite distinct cultural differences, there was a clear discrepancy between patients’ and caregivers’ perspective on patients’ well-being and preferences towards life in all three countries. This possible bias in caregivers’ judgment needs to be taken into account in surrogate decision making.

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Added entries (persons, corporate bodies, meetings, titles ...)

  • Kuźma-Kozakiewicz, MagdalenaDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland; Neurodegenerative Diseases Research Group, Medical University of Warsaw, Warsaw, Poland (author)
  • Keller, JürgenDepartment of Neurology, University of Ulm, Ulm, Germany (author)
  • Maksymowicz-Śliwińska, AnnaDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland (author)
  • Barć, KrzysztofDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland (author)
  • Nieporęcki, KrzysztofDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland (author)
  • Finsel, JuliaDepartment of Neurology, University of Ulm, Ulm, Germany (author)
  • Vazquez, CynthiaDepartment of Neurology, University of Ulm, Ulm, Germany (author)
  • Helczyk, OlgaDepartment of Neurology, University of Ulm, Ulm, Germany (author)
  • Linse, KatharinaDepartment of Neurology, Technische Universität Dresden, and German Center for Neurodegenerative Diseases (DZNE), Dresden, Germany (author)
  • Häggström, Ann-Cristin E.Umeå universitet,Neurovetenskaper(Swepub:umu)anha0123 (author)
  • Stenberg, EricaUmeå universitet,Neurovetenskaper(Swepub:umu)eral0022 (author)
  • Semb, Olof,1968-Umeå universitet,Professionell utveckling(Swepub:umu)olse0001 (author)
  • Ciećwierska, KatarzynaDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland (author)
  • Szejko, NataliaDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland (author)
  • Uttner, IngoDepartment of Neurology, University of Ulm, Ulm, Germany (author)
  • Herrmann, AndreasDepartment of Neurology, Technische Universität Dresden, and German Center for Neurodegenerative Diseases (DZNE), Dresden, Germany (author)
  • Petri, SusanneDepartment of Neurology, Hannover Medical School, Hannover, Germany (author)
  • Meyer, ThomasDepartment of Neurology, Charité CVK, Berlin, Germany (author)
  • Ludolph, Albert C.Department of Neurology, University of Ulm, Ulm, Germany; German Center for Neurodegenerative Diseases (DZNE), Ulm, Germany (author)
  • Lulé, DorothéeDepartment of Neurology, University of Ulm, Ulm, Germany (author)
  • Umeå universitetNeurovetenskaper (creator_code:org_t)

Related titles

  • In:Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration: Taylor & Francis23:3-4, s. 252-2622167-84212167-9223

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