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Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care

Journal article
Authors Ramona Schenell
Anneli Olsson Ozanne
Susann Strang
Ingela Henoch
Published in Palliative and Supportive Care
ISSN 14789515
Publication year 2019
Published at Institute of Health and Care Sciences
Language en
Keywords Autonomy, Palliative, QPP, Quality of care, Self-determination
Subject categories Health Sciences

Abstract

© Cambridge University Press 2019. ObjectiveDependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.MethodThis cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.ResultQoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.Significance of resultsBroad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.

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