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“Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study
BACKGROUND: Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6909516/ https://www.ncbi.nlm.nih.gov/pubmed/31830967 http://dx.doi.org/10.1186/s12904-019-0493-7 |
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author | Im, Jennifer Mak, Susanna Upshur, Ross Steinberg, Leah Kuluski, Kerry |
author_facet | Im, Jennifer Mak, Susanna Upshur, Ross Steinberg, Leah Kuluski, Kerry |
author_sort | Im, Jennifer |
collection | PubMed |
description | BACKGROUND: Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers. METHODS: In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data. RESULTS: Four themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members. CONCLUSION: The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life. |
format | Online Article Text |
id | pubmed-6909516 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-69095162019-12-19 “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study Im, Jennifer Mak, Susanna Upshur, Ross Steinberg, Leah Kuluski, Kerry BMC Palliat Care Research Article BACKGROUND: Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers. METHODS: In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data. RESULTS: Four themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members. CONCLUSION: The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life. BioMed Central 2019-12-12 /pmc/articles/PMC6909516/ /pubmed/31830967 http://dx.doi.org/10.1186/s12904-019-0493-7 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Article Im, Jennifer Mak, Susanna Upshur, Ross Steinberg, Leah Kuluski, Kerry “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study |
title | “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study |
title_full | “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study |
title_fullStr | “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study |
title_full_unstemmed | “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study |
title_short | “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study |
title_sort | “whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a qualitative study |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6909516/ https://www.ncbi.nlm.nih.gov/pubmed/31830967 http://dx.doi.org/10.1186/s12904-019-0493-7 |
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