Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore

Objectives This study aims to describe the caregivers’ end-of-life (EOL) decision-making experience, what made family caregivers feel assured when they were making the right call, and when they felt uncertain or regretful about decisions made. The objective is to describe the decision-making journey...

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Main Authors: Gerald Choon Huat Koh, Pin Sym Foong, See Mieng Tan, Min Li Ong, Xingyu Xia
Format: Article
Language:English
Published: BMJ Publishing Group 2024-07-01
Series:BMJ Public Health
Online Access:https://bmjpublichealth.bmj.com/content/2/1/e000646.full
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author Gerald Choon Huat Koh
Pin Sym Foong
See Mieng Tan
Min Li Ong
Xingyu Xia
author_facet Gerald Choon Huat Koh
Pin Sym Foong
See Mieng Tan
Min Li Ong
Xingyu Xia
author_sort Gerald Choon Huat Koh
collection DOAJ
description Objectives This study aims to describe the caregivers’ end-of-life (EOL) decision-making experience, what made family caregivers feel assured when they were making the right call, and when they felt uncertain or regretful about decisions made. The objective is to describe the decision-making journey and identify how interventions can be developed for these caregivers.Methods Semi-structured interviews with 14 adult and spousal caregivers were conducted using an interview guide and transcripts were coded inductively via reflexive thematic analysis.Results First, clarity in communication enhances satisfaction with their decisions. This involves transparency of communication channels within the family unit which is in charge of helping their patient make EOL decisions, and with the healthcare professional. Second, satisfaction was enhanced with clear prognostication of the patient’s condition to the family who then used it to discuss their options. Finally, families often elect a lead facilitator within the family unit who manages the decision-making process, and collates multiple perspectives from all the stakeholders.Conclusions Based on these findings, we recommend that interventions to support family-based decision-making in Singapore should be based on the three principles of hearing patient values, sharing these values with other loved ones and providers and applying these values in collaboration with the providers and family members.
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spelling doaj-art-08ee8989874f4e61999dc9e1107e00ca2025-01-28T21:05:09ZengBMJ Publishing GroupBMJ Public Health2753-42942024-07-012110.1136/bmjph-2023-000646Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in SingaporeGerald Choon Huat Koh0Pin Sym Foong1See Mieng Tan2Min Li Ong3Xingyu Xia45 MOH Office of Healthcare Transformation, Singapore2 Saw Swee Hock School of Public Health, National University of Singapore, SingaporeTelehealth Core, National University of Singapore, SingaporeSaw Swee Hock School of Public Heath, National University of Singapore, SingaporeDepartment of Neurology, Huashan Hospital Fudan University, Shanghai, Shanghai, ChinaObjectives This study aims to describe the caregivers’ end-of-life (EOL) decision-making experience, what made family caregivers feel assured when they were making the right call, and when they felt uncertain or regretful about decisions made. The objective is to describe the decision-making journey and identify how interventions can be developed for these caregivers.Methods Semi-structured interviews with 14 adult and spousal caregivers were conducted using an interview guide and transcripts were coded inductively via reflexive thematic analysis.Results First, clarity in communication enhances satisfaction with their decisions. This involves transparency of communication channels within the family unit which is in charge of helping their patient make EOL decisions, and with the healthcare professional. Second, satisfaction was enhanced with clear prognostication of the patient’s condition to the family who then used it to discuss their options. Finally, families often elect a lead facilitator within the family unit who manages the decision-making process, and collates multiple perspectives from all the stakeholders.Conclusions Based on these findings, we recommend that interventions to support family-based decision-making in Singapore should be based on the three principles of hearing patient values, sharing these values with other loved ones and providers and applying these values in collaboration with the providers and family members.https://bmjpublichealth.bmj.com/content/2/1/e000646.full
spellingShingle Gerald Choon Huat Koh
Pin Sym Foong
See Mieng Tan
Min Li Ong
Xingyu Xia
Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore
BMJ Public Health
title Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore
title_full Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore
title_fullStr Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore
title_full_unstemmed Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore
title_short Hearing, sharing and applying: a qualitative study of the experiences of family caregivers’ end-of-life decision-making in Singapore
title_sort hearing sharing and applying a qualitative study of the experiences of family caregivers end of life decision making in singapore
url https://bmjpublichealth.bmj.com/content/2/1/e000646.full
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