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Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden
Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Neurovetenskaper.ORCID-id: 0000-0003-0094-5429
Department of Neurology, Medical University of Warsaw, Warsaw, Poland; Neurodegenerative Diseases Research Group, Medical University of Warsaw, Warsaw, Poland.
Department of Neurology, University of Ulm, Ulm, Germany.
Department of Neurology, Medical University of Warsaw, Warsaw, Poland.
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2022 (Engelska)Ingår i: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, ISSN 2167-8421, E-ISSN 2167-9223, Vol. 23, nr 3-4, s. 252-262Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
Taylor & Francis, 2022. Vol. 23, nr 3-4, s. 252-262
Nyckelord [en]
amyotrophic lateral sclerosis, caregivers, Decision making, palliative care, quality of life
Nationell ämneskategori
Omvårdnad Neurologi
Identifikatorer
URN: urn:nbn:se:umu:diva-186171DOI: 10.1080/21678421.2021.1936064ISI: 000668449000001PubMedID: 34187249Scopus ID: 2-s2.0-85109350114OAI: oai:DiVA.org:umu-186171DiVA, id: diva2:1580796
Forskningsfinansiär
VetenskapsrådetTillgänglig från: 2021-07-16 Skapad: 2021-07-16 Senast uppdaterad: 2024-03-19Bibliografiskt granskad

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Andersen, Peter M.Häggström, Ann-Cristin E.Stenberg, EricaSemb, Olof

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Andersen, Peter M.Häggström, Ann-Cristin E.Stenberg, EricaSemb, Olof
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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
OmvårdnadNeurologi

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