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Title: Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting
Authors: Wang, Yi 
Tyagi, Shilpa 
Hoenig, Helen
Lee, Kim En 
Venketasubramanian, Narayanaswamy
Menon, Edward
De Silva, Deidre Anne
Yap, Philip 
Tan, Boon Yeow 
Young, Sherry H
Ng, Yee Sien 
Tu, Tian Ming 
Ang, Yan Hoon
Kong, Keng He 
Singh, Rajinder 
Merchant, Reshma A 
Chang, Hui Meng 
Ning, Chou
Cheong, Angela
Koh, Gerald Choon-Huat 
Keywords: Science & Technology
Life Sciences & Biomedicine
Public, Environmental & Occupational Health
Informal care
Quality of life
Stroke management
Socio-economic factors
Issue Date: 26-Oct-2021
Publisher: BMC
Citation: Wang, Yi, Tyagi, Shilpa, Hoenig, Helen, Lee, Kim En, Venketasubramanian, Narayanaswamy, Menon, Edward, De Silva, Deidre Anne, Yap, Philip, Tan, Boon Yeow, Young, Sherry H, Ng, Yee Sien, Tu, Tian Ming, Ang, Yan Hoon, Kong, Keng He, Singh, Rajinder, Merchant, Reshma A, Chang, Hui Meng, Ning, Chou, Cheong, Angela, Koh, Gerald Choon-Huat (2021-10-26). Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting. BMC PUBLIC HEALTH 21 (1). ScholarBank@NUS Repository.
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.
ISSN: 14712458
DOI: 10.1186/s12889-021-11991-3
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