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Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness
Background. Many patients with severe brain damage may survive and remain in a prolonged disorder of consciousness (PDoC), impacting the quality of life (QoL) and needs of their family caregivers. However, the current literature on the factors influencing these needs is contradictory. We aim to desc...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9953960/ https://www.ncbi.nlm.nih.gov/pubmed/36831851 http://dx.doi.org/10.3390/brainsci13020308 |
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author | Gosseries, Olivia Schnakers, Caroline Vanhaudenhuyse, Audrey Martial, Charlotte Aubinet, Charlène Charland-Verville, Vanessa Thibaut, Aurore Annen, Jitka Ledoux, Didier Laureys, Steven Grégoire, Charlotte |
author_facet | Gosseries, Olivia Schnakers, Caroline Vanhaudenhuyse, Audrey Martial, Charlotte Aubinet, Charlène Charland-Verville, Vanessa Thibaut, Aurore Annen, Jitka Ledoux, Didier Laureys, Steven Grégoire, Charlotte |
author_sort | Gosseries, Olivia |
collection | PubMed |
description | Background. Many patients with severe brain damage may survive and remain in a prolonged disorder of consciousness (PDoC), impacting the quality of life (QoL) and needs of their family caregivers. However, the current literature on the factors influencing these needs is contradictory. We aim to describe the needs, QoL, and emotional distress of caregivers of patients with PDoC. Methods. Questionnaires investigating the importance and satisfaction of six categories of needs (i.e., health information, emotional, instrumental, and professional supports, community support network, and involvement in care), QoL, and emotional distress were completed by the main caregivers of PDoC patients. Results. We analyzed 177 questionnaires. Seventy-nine percent of the needs were considered as important or very important, and 44% were partially met or unmet. The needs for health information and professional support were the most important, while the needs for involvement in care and for health information were the most satisfied. Mean QoL was low and emotional distress high. Variables such as care setting and time since brain injury affected the level of QoL and distress. Conclusion. The needs for health information and professional support should receive particular attention. Given their low QoL and high distress, adequate support structures should be provided to caregivers of PDoC patients. |
format | Online Article Text |
id | pubmed-9953960 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-99539602023-02-25 Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness Gosseries, Olivia Schnakers, Caroline Vanhaudenhuyse, Audrey Martial, Charlotte Aubinet, Charlène Charland-Verville, Vanessa Thibaut, Aurore Annen, Jitka Ledoux, Didier Laureys, Steven Grégoire, Charlotte Brain Sci Article Background. Many patients with severe brain damage may survive and remain in a prolonged disorder of consciousness (PDoC), impacting the quality of life (QoL) and needs of their family caregivers. However, the current literature on the factors influencing these needs is contradictory. We aim to describe the needs, QoL, and emotional distress of caregivers of patients with PDoC. Methods. Questionnaires investigating the importance and satisfaction of six categories of needs (i.e., health information, emotional, instrumental, and professional supports, community support network, and involvement in care), QoL, and emotional distress were completed by the main caregivers of PDoC patients. Results. We analyzed 177 questionnaires. Seventy-nine percent of the needs were considered as important or very important, and 44% were partially met or unmet. The needs for health information and professional support were the most important, while the needs for involvement in care and for health information were the most satisfied. Mean QoL was low and emotional distress high. Variables such as care setting and time since brain injury affected the level of QoL and distress. Conclusion. The needs for health information and professional support should receive particular attention. Given their low QoL and high distress, adequate support structures should be provided to caregivers of PDoC patients. MDPI 2023-02-11 /pmc/articles/PMC9953960/ /pubmed/36831851 http://dx.doi.org/10.3390/brainsci13020308 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Gosseries, Olivia Schnakers, Caroline Vanhaudenhuyse, Audrey Martial, Charlotte Aubinet, Charlène Charland-Verville, Vanessa Thibaut, Aurore Annen, Jitka Ledoux, Didier Laureys, Steven Grégoire, Charlotte Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness |
title | Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness |
title_full | Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness |
title_fullStr | Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness |
title_full_unstemmed | Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness |
title_short | Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness |
title_sort | needs and quality of life of caregivers of patients with prolonged disorders of consciousness |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9953960/ https://www.ncbi.nlm.nih.gov/pubmed/36831851 http://dx.doi.org/10.3390/brainsci13020308 |
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