Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness
<b>Background</b>. 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 contradict...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-02-01
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| Series: | Brain Sciences |
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| Online Access: | https://www.mdpi.com/2076-3425/13/2/308 |
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| author | Olivia Gosseries Caroline Schnakers Audrey Vanhaudenhuyse Charlotte Martial Charlène Aubinet Vanessa Charland-Verville Aurore Thibaut Jitka Annen Didier Ledoux Steven Laureys Charlotte Grégoire |
| author_facet | Olivia Gosseries Caroline Schnakers Audrey Vanhaudenhuyse Charlotte Martial Charlène Aubinet Vanessa Charland-Verville Aurore Thibaut Jitka Annen Didier Ledoux Steven Laureys Charlotte Grégoire |
| author_sort | Olivia Gosseries |
| collection | DOAJ |
| description | <b>Background</b>. 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. <b>Methods</b>. 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. <b>Results</b>. 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. <b>Conclusion</b>. 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. |
| first_indexed | 2024-03-11T09:04:21Z |
| format | Article |
| id | doaj.art-aa0624f9111840678a8aaa4cfc264dfe |
| institution | Directory Open Access Journal |
| issn | 2076-3425 |
| language | English |
| last_indexed | 2024-03-11T09:04:21Z |
| publishDate | 2023-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Brain Sciences |
| spelling | doaj.art-aa0624f9111840678a8aaa4cfc264dfe2023-11-16T19:29:12ZengMDPI AGBrain Sciences2076-34252023-02-0113230810.3390/brainsci13020308Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of ConsciousnessOlivia Gosseries0Caroline Schnakers1Audrey Vanhaudenhuyse2Charlotte Martial3Charlène Aubinet4Vanessa Charland-Verville5Aurore Thibaut6Jitka Annen7Didier Ledoux8Steven Laureys9Charlotte Grégoire10Coma Science Group, GIGA-Consciousness, University of Liège, Avenue de l’Hôpital, 1, 4000 Liège, BelgiumResearch Institute, Casa Colina Hospital and Centers for Healthcare, Pomona, CA 91767, USASensation and Perception Research Group, GIGA-Consciousness, University of Liège, 4000 Liège, BelgiumComa Science Group, GIGA-Consciousness, University of Liège, Avenue de l’Hôpital, 1, 4000 Liège, BelgiumComa Science Group, GIGA-Consciousness, University of Liège, Avenue de l’Hôpital, 1, 4000 Liège, BelgiumGIGA-Consciousness, Coma Science Group & Neurology Department, University and CHU of Liège, 4000 Liège, BelgiumComa Science Group, GIGA-Consciousness, University of Liège, Avenue de l’Hôpital, 1, 4000 Liège, BelgiumComa Science Group, GIGA-Consciousness, University of Liège, Avenue de l’Hôpital, 1, 4000 Liège, BelgiumCentre du Cerveau, University Hospital of Liège, 4000 Liège, BelgiumComa Science Group, GIGA-Consciousness, University of Liège, Avenue de l’Hôpital, 1, 4000 Liège, BelgiumSensation and Perception Research Group, GIGA-Consciousness, University of Liège, 4000 Liège, Belgium<b>Background</b>. 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. <b>Methods</b>. 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. <b>Results</b>. 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. <b>Conclusion</b>. 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.https://www.mdpi.com/2076-3425/13/2/308brain injuryfamily needscaregivervegetative stateunresponsive wakefulness syndromeminimally conscious state |
| spellingShingle | Olivia Gosseries Caroline Schnakers Audrey Vanhaudenhuyse Charlotte Martial Charlène Aubinet Vanessa Charland-Verville Aurore Thibaut Jitka Annen Didier Ledoux Steven Laureys Charlotte Grégoire Needs and Quality of Life of Caregivers of Patients with Prolonged Disorders of Consciousness Brain Sciences brain injury family needs caregiver vegetative state unresponsive wakefulness syndrome minimally conscious state |
| 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 | brain injury family needs caregiver vegetative state unresponsive wakefulness syndrome minimally conscious state |
| url | https://www.mdpi.com/2076-3425/13/2/308 |
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