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Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions

Background: Previous qualitative studies indicate high caregiver burden associated with providing care for people with treatment-resistant schizophrenia (TRS). In this study, we report the first quantitative data to characterize the burdens of caring for a person living with TRS. To better understan...

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Autores principales: Velligan, Dawn I., Brain, Cecilia, Bouérat Duvold, Laëtitia, Agid, Ofer
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6743609/
https://www.ncbi.nlm.nih.gov/pubmed/31551821
http://dx.doi.org/10.3389/fpsyt.2019.00584
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author Velligan, Dawn I.
Brain, Cecilia
Bouérat Duvold, Laëtitia
Agid, Ofer
author_facet Velligan, Dawn I.
Brain, Cecilia
Bouérat Duvold, Laëtitia
Agid, Ofer
author_sort Velligan, Dawn I.
collection PubMed
description Background: Previous qualitative studies indicate high caregiver burden associated with providing care for people with treatment-resistant schizophrenia (TRS). In this study, we report the first quantitative data to characterize the burdens of caring for a person living with TRS. To better understand the potential added burdens of persistent positive symptoms, we compared the self-reported burdens of caregiving for people living with TRS versus caregiving for those whose positive schizophrenia symptoms respond to treatment (comparator group). Methods: Non-professional adult caregivers providing ≥20 h/week of care to individuals with schizophrenia completed an online survey. Allocation to the TRS or comparator groups was based on caregiver report. TRS was defined as failure of ≥2 separate antipsychotics and at least moderate severity in two of four persistent core positive symptoms despite medication adherence. Care recipients in the comparator schizophrenia group had no clinically significant positive symptoms. Results: One hundred seventy seven caregivers (n = 100 TRS group, n = 77 comparator group) completed the online survey. Caregivers in both groups reported high levels of every day involvement in most aspects of daily life, including assistance with basic tasks, housekeeping, and in providing emotional support. There were no significant differences between groups on overall social life or health. However, caregivers of people living with TRS were significantly more likely to be experiencing stress (76% vs. 53%) and anxiety (58% vs. 43%). Relevant differences between caregiver groups were also noted for mean number of hours spent per week on direct care (TRS group vs. comparator group: 61.1 h/week vs. 39.7 h/week, respectively) and time spent “on call” (162.8 h/week vs. 121.6 h/week). Amongst the caregivers in the TRS group, correlation analyses revealed moderate positive correlations between the reported burden of individual persistent positive symptoms with overall caregiver burden. Conclusion: Our findings show that caring for a person living with TRS places considerable burden on caregivers’ lives, with the severity of the disease (and especially severity of positive symptoms) driving further burden, as highlighted by a number of quantitative differences between the TRS and comparator groups.
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spelling pubmed-67436092019-09-24 Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions Velligan, Dawn I. Brain, Cecilia Bouérat Duvold, Laëtitia Agid, Ofer Front Psychiatry Psychiatry Background: Previous qualitative studies indicate high caregiver burden associated with providing care for people with treatment-resistant schizophrenia (TRS). In this study, we report the first quantitative data to characterize the burdens of caring for a person living with TRS. To better understand the potential added burdens of persistent positive symptoms, we compared the self-reported burdens of caregiving for people living with TRS versus caregiving for those whose positive schizophrenia symptoms respond to treatment (comparator group). Methods: Non-professional adult caregivers providing ≥20 h/week of care to individuals with schizophrenia completed an online survey. Allocation to the TRS or comparator groups was based on caregiver report. TRS was defined as failure of ≥2 separate antipsychotics and at least moderate severity in two of four persistent core positive symptoms despite medication adherence. Care recipients in the comparator schizophrenia group had no clinically significant positive symptoms. Results: One hundred seventy seven caregivers (n = 100 TRS group, n = 77 comparator group) completed the online survey. Caregivers in both groups reported high levels of every day involvement in most aspects of daily life, including assistance with basic tasks, housekeeping, and in providing emotional support. There were no significant differences between groups on overall social life or health. However, caregivers of people living with TRS were significantly more likely to be experiencing stress (76% vs. 53%) and anxiety (58% vs. 43%). Relevant differences between caregiver groups were also noted for mean number of hours spent per week on direct care (TRS group vs. comparator group: 61.1 h/week vs. 39.7 h/week, respectively) and time spent “on call” (162.8 h/week vs. 121.6 h/week). Amongst the caregivers in the TRS group, correlation analyses revealed moderate positive correlations between the reported burden of individual persistent positive symptoms with overall caregiver burden. Conclusion: Our findings show that caring for a person living with TRS places considerable burden on caregivers’ lives, with the severity of the disease (and especially severity of positive symptoms) driving further burden, as highlighted by a number of quantitative differences between the TRS and comparator groups. Frontiers Media S.A. 2019-09-06 /pmc/articles/PMC6743609/ /pubmed/31551821 http://dx.doi.org/10.3389/fpsyt.2019.00584 Text en Copyright © 2019 Velligan, Brain, Bouérat Duvold and Agid http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Psychiatry
Velligan, Dawn I.
Brain, Cecilia
Bouérat Duvold, Laëtitia
Agid, Ofer
Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions
title Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions
title_full Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions
title_fullStr Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions
title_full_unstemmed Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions
title_short Caregiver Burdens Associated With Treatment-Resistant Schizophrenia: A Quantitative Caregiver Survey of Experiences, Attitudes, and Perceptions
title_sort caregiver burdens associated with treatment-resistant schizophrenia: a quantitative caregiver survey of experiences, attitudes, and perceptions
topic Psychiatry
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6743609/
https://www.ncbi.nlm.nih.gov/pubmed/31551821
http://dx.doi.org/10.3389/fpsyt.2019.00584
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