Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting

Abstract Background Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor’s outcomes. Our study aimed to examine and quantify objective...

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Main Authors: Yi Wang, Shilpa Tyagi, Helen Hoenig, Kim En Lee, Narayanaswamy Venketasubramanian, Edward Menon, Deidre Anne De Silva, Philip Yap, Boon Yeow Tan, Sherry H. Young, Yee Sien Ng, Tian Ming Tu, Yan Hoon Ang, Keng He Kong, Rajinder Singh, Reshma A. Merchant, Hui Meng Chang, Chou Ning, Angela Cheong, Gerald Choon-Huat Koh
Format: Article
Language:English
Published: BMC 2021-10-01
Series:BMC Public Health
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Online Access:https://doi.org/10.1186/s12889-021-11991-3
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author Yi Wang
Shilpa Tyagi
Helen Hoenig
Kim En Lee
Narayanaswamy Venketasubramanian
Edward Menon
Deidre Anne De Silva
Philip Yap
Boon Yeow Tan
Sherry H. Young
Yee Sien Ng
Tian Ming Tu
Yan Hoon Ang
Keng He Kong
Rajinder Singh
Reshma A. Merchant
Hui Meng Chang
Chou Ning
Angela Cheong
Gerald Choon-Huat Koh
author_facet Yi Wang
Shilpa Tyagi
Helen Hoenig
Kim En Lee
Narayanaswamy Venketasubramanian
Edward Menon
Deidre Anne De Silva
Philip Yap
Boon Yeow Tan
Sherry H. Young
Yee Sien Ng
Tian Ming Tu
Yan Hoon Ang
Keng He Kong
Rajinder Singh
Reshma A. Merchant
Hui Meng Chang
Chou Ning
Angela Cheong
Gerald Choon-Huat Koh
author_sort Yi Wang
collection DOAJ
description Abstract Background Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor’s outcomes. Our study aimed to examine and quantify objective and subjective informal care burden after stroke; and to explore the factors associated with informal care burden in Singapore. Methods Stroke patients and their informal caregivers were recruited from all five tertiary hospitals in Singapore from December 2010 to September 2013. Informal care comprised of assistance provided by informal caregivers with any of the activities of daily living. Informal care burden was measured by patients’ likelihood of requiring informal care, hours of informal care required, and informal caregivers’ Zarit’s Burden Score. We examined informal care burden at 3-months and 12-months post-stroke. Generalized linear regressions were applied with control variables including patients’ and informal caregivers’ demographic characteristics, arrangement of informal care, and patients’ health status including stroke severity (measured using National Institute of Health Stroke Scale), functional status (measured using Modified Rankin Scale), self-reported depression, and common comorbidities. Results Three hundred and five patients and 263 patients were examined at 3-months and 12-months. Around 35% were female and 60% were Chinese. Sixty three percent and 49% of the patients required informal care at 3-months and 12-months point, respectively. Among those who required informal care, average hours required per week were 64.3 h at 3-months and 76.6 h at 12-months point. Patients with higher functional dependency were more likely to require informal care at both time points, and required more hours of informal care at 3-months point. Female informal caregivers and those caring for patients with higher functional dependency reported higher Zarit’s Burden. While informal caregivers who worked full-time reported higher burden, those caring for married stroke patients reported lower burden at 3-months point. Informal caregivers who co-cared with foreign domestic workers, i.e.: stay-in migrant female waged domestic workers, reported lower burden. Conclusions Informal care burden remains high up to 12-months post-stroke. Factors such as functional dependency, stroke severity, informal caregiver gender and co-caring with foreign domestic workers were associated with informal care burden.
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spelling doaj.art-1eacfa07a1274232bd3dc2fa82d1e76e2022-12-21T21:29:51ZengBMCBMC Public Health1471-24582021-10-0121111410.1186/s12889-021-11991-3Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian settingYi Wang0Shilpa Tyagi1Helen Hoenig2Kim En Lee3Narayanaswamy Venketasubramanian4Edward Menon5Deidre Anne De Silva6Philip Yap7Boon Yeow Tan8Sherry H. Young9Yee Sien Ng10Tian Ming Tu11Yan Hoon Ang12Keng He Kong13Rajinder Singh14Reshma A. Merchant15Hui Meng Chang16Chou Ning17Angela Cheong18Gerald Choon-Huat Koh19Saw Swee Hock School of Public Health, National University of SingaporeSaw Swee Hock School of Public Health, National University of SingaporePhysical Medicine and Rehabilitation ServiceLee Kim En Neurology Pte Ltd, Mount Elizabeth, #11-14/15, Mount Elizabeth Medical CentreRaffles Neuroscience Centre, Raffles HospitalSt. Andrew’s Community HospitalNational Neuroscience Institute, Singapore General Hospital campusDept of Geriatric Medicine, Khoo Teck Puat HospitalSt. Luke’s HospitalDepartment of Rehabilitation Medicine, Changi General HospitalDepartment of Rehabilitation Medicine, Singapore General HospitalDepartment of Neurology, National Neuroscience Institute, Neurology, Tan Tock Seng HospitalDept of Geriatric Medicine, Khoo Teck Puat HospitalDepartment of Rehabilitation Medicine, Tan Tock Seng HospitalDepartment of Neurology, National Neuroscience Institute, Neurology, Tan Tock Seng HospitalDepartment of Medicine, Yong Loo Lin School of Medicine, National University of SingaporeNational Neuroscience Institute, Singapore General Hospital campusDepartment of Neurosurgery, National University HospitalSaw Swee Hock School of Public Health, National University of SingaporeSaw Swee Hock School of Public Health, National University of SingaporeAbstract Background Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor’s outcomes. Our study aimed to examine and quantify objective and subjective informal care burden after stroke; and to explore the factors associated with informal care burden in Singapore. Methods Stroke patients and their informal caregivers were recruited from all five tertiary hospitals in Singapore from December 2010 to September 2013. Informal care comprised of assistance provided by informal caregivers with any of the activities of daily living. Informal care burden was measured by patients’ likelihood of requiring informal care, hours of informal care required, and informal caregivers’ Zarit’s Burden Score. We examined informal care burden at 3-months and 12-months post-stroke. Generalized linear regressions were applied with control variables including patients’ and informal caregivers’ demographic characteristics, arrangement of informal care, and patients’ health status including stroke severity (measured using National Institute of Health Stroke Scale), functional status (measured using Modified Rankin Scale), self-reported depression, and common comorbidities. Results Three hundred and five patients and 263 patients were examined at 3-months and 12-months. Around 35% were female and 60% were Chinese. Sixty three percent and 49% of the patients required informal care at 3-months and 12-months point, respectively. Among those who required informal care, average hours required per week were 64.3 h at 3-months and 76.6 h at 12-months point. Patients with higher functional dependency were more likely to require informal care at both time points, and required more hours of informal care at 3-months point. Female informal caregivers and those caring for patients with higher functional dependency reported higher Zarit’s Burden. While informal caregivers who worked full-time reported higher burden, those caring for married stroke patients reported lower burden at 3-months point. Informal caregivers who co-cared with foreign domestic workers, i.e.: stay-in migrant female waged domestic workers, reported lower burden. Conclusions Informal care burden remains high up to 12-months post-stroke. Factors such as functional dependency, stroke severity, informal caregiver gender and co-caring with foreign domestic workers were associated with informal care burden.https://doi.org/10.1186/s12889-021-11991-3Informal careQuality of lifeRehabilitationStrokeStroke managementSocio-economic factors
spellingShingle Yi Wang
Shilpa Tyagi
Helen Hoenig
Kim En Lee
Narayanaswamy Venketasubramanian
Edward Menon
Deidre Anne De Silva
Philip Yap
Boon Yeow Tan
Sherry H. Young
Yee Sien Ng
Tian Ming Tu
Yan Hoon Ang
Keng He Kong
Rajinder Singh
Reshma A. Merchant
Hui Meng Chang
Chou Ning
Angela Cheong
Gerald Choon-Huat Koh
Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
BMC Public Health
Informal care
Quality of life
Rehabilitation
Stroke
Stroke management
Socio-economic factors
title Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
title_full Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
title_fullStr Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
title_full_unstemmed Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
title_short Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
title_sort burden of informal care in stroke survivors and its determinants a prospective observational study in an asian setting
topic Informal care
Quality of life
Rehabilitation
Stroke
Stroke management
Socio-economic factors
url https://doi.org/10.1186/s12889-021-11991-3
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