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The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study

INTRODUCTION: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a...

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Autores principales: Wasilewski, Marina B., Kokorelias, Kristina M., Nonoyama, Mika, Dale, Craig, McKim, Douglas A, Road, Jeremy, Leasa, David, Tandon, Anu, Goldstein, Roger, Rose, Louise
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9703527/
https://www.ncbi.nlm.nih.gov/pubmed/36452271
http://dx.doi.org/10.1177/20552076221134964
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author Wasilewski, Marina B.
Kokorelias, Kristina M.
Nonoyama, Mika
Dale, Craig
McKim, Douglas A
Road, Jeremy
Leasa, David
Tandon, Anu
Goldstein, Roger
Rose, Louise
author_facet Wasilewski, Marina B.
Kokorelias, Kristina M.
Nonoyama, Mika
Dale, Craig
McKim, Douglas A
Road, Jeremy
Leasa, David
Tandon, Anu
Goldstein, Roger
Rose, Louise
author_sort Wasilewski, Marina B.
collection PubMed
description INTRODUCTION: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers’ support needs. METHODS: A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis. RESULTS: In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful. DISCUSSION: Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory.
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spelling pubmed-97035272022-11-29 The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study Wasilewski, Marina B. Kokorelias, Kristina M. Nonoyama, Mika Dale, Craig McKim, Douglas A Road, Jeremy Leasa, David Tandon, Anu Goldstein, Roger Rose, Louise Digit Health Qualitative Study INTRODUCTION: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers’ support needs. METHODS: A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis. RESULTS: In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful. DISCUSSION: Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory. SAGE Publications 2022-11-25 /pmc/articles/PMC9703527/ /pubmed/36452271 http://dx.doi.org/10.1177/20552076221134964 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Qualitative Study
Wasilewski, Marina B.
Kokorelias, Kristina M.
Nonoyama, Mika
Dale, Craig
McKim, Douglas A
Road, Jeremy
Leasa, David
Tandon, Anu
Goldstein, Roger
Rose, Louise
The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study
title The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study
title_full The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study
title_fullStr The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study
title_full_unstemmed The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study
title_short The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study
title_sort experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: a qualitative study
topic Qualitative Study
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9703527/
https://www.ncbi.nlm.nih.gov/pubmed/36452271
http://dx.doi.org/10.1177/20552076221134964
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