Factors Associated Caregiver Burdens Among Family Living With Stroke Patient: A Systematic Review

Authors

  • Belina Tuariana Gaio Ximenes Hospital Nacional Guido Valadares
  • Mira Triharini Faculty of Nursing Airlangga University, Indonesia
  • Retno Indarwati Faculty of Nursing, Universitas Airlangga, Surabaya, Indonesia
  • Ida Zuhroidah Faculty Of Nursing, Jember University, Jember, Indonesia

DOI:

https://doi.org/10.19184/nlj.v10i1.53690

Keywords:

Caregivers burden, Family, Stroke patients

Abstract

Introduction: Stroke is a life-changing event that impacts not only people with disabilities, but also their families which is a source of high demands for long-term care, potentially causing a burden on caregivers. This study aims to analyse the factors associated caregiver burdens among family of stroke patients. Method: The method used was a systematic review sourced from journals searched through the Scopus, Science of Direct, WOS and Spinger Link databases published in less than the last 5 years (2018-2023). Keywords adjusted to Medical Subject Heading (Mesh) phrases, namely “Caregiver OR Family AND Burden OR Care OR Caring AND Stroke OR ((haemorrhagic stroke)) OR Stroke OR Disease”. Analysis of the results of this study using the PEOS method (Population, Exposure, Outcomes, and Study Design). Results: Study showed that 12 studies according to the specified inclusion criteria. All articles have a design cross-sectional study. The majority of respondents informal caregivers from various countries. The results of the review showed that factors related to caregiver burden in families of stroke patients are patient's condition, time of treatment, education level, income, length of treatment, patient complications, family support. Conclusion: Based on the results found, there are several factors that can affect caregiver burden so that one of the nursing interventions that can be provided is the provision of education related to patient care and the importance of family support in caring for patient with stroke so that it is expected to reduce the burden on caregivers.

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References

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Ariska, Y. N., Handayani, P. A., & Hartati, E. (2020). Faktor yang Berhubungan dengan Beban Caregiver dalam Merawat Keluarga yang Mengalami Stroke. Holistic Nursing and Health Science, 3(1), 52–63. https://doi.org/10.14710/hnhs.3.1.2020.52-63

Béjot, Y., Daubail, B., & Giroud, M. (2016). Epidemiology of stroke and transient ischemic attacks: Current knowledge and perspectives. Revue Neurologique, 172(1), 59–68. https://doi.org/10.1016/j.neurol.2015.07.013

Çelik, A., & Kara, B. (2019). The relationship between the stroke survivors’ functional status and their informal caregivers’ burden and quality of life. AIMS MEDICAL SCIENCE, 6(1), 115–127. https://doi.org/10.3934/medsci.2019.1.115

Chafjiri, R. T., Navabi, N., Shamsalinia, A., & Ghaffari, F. (2017). The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. Clinical Interventions in Aging,12,453458.https://doi.org/10.2147/CIA.S121285

David et al., 2021. (2017). David C, Namasivayam-MacDonald AM, Shune SE. Contributors to poststroke dysphagia-related caregiver burden. Am J Speech Lang Pathol 2021;30:1061-73. doi: 10.1044/2021_AJSLP-20-00250. Journal of Chemical Information and Modeling, 53(9),16891699.file:///C:/Users/User/Downloads/fvm939e.pdf

Fang, L., Dong, M., Fang, W., & Zheng, J. (2022). Relationships between care burden, resilience, and depressive symptoms among the main family caregivers of stroke patients: A cross sectional study. Frontiers in Psychiatry,13.https://doi.org/10.3389/fpsyt.2022.960830

Freytes et al., 2021. (2023). Freytes IM, Sullivan M, Schmitzberger M, LeLaurin J, Orozco T, Eliazar Macke N, et al. Types of stroke-related deficits and their impact on family caregiver’s depressive symptoms, burden, and quality of life. Disability Health J 2021;14:101019.doi:10.1016/.Solusi,21(4),792.https://doi.org/10.26623/slsi.v21i4.7531

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Giray, E., Eyigör, S., Çalık, Y., Gezer, İ. A., Sarı, A., Umay, E., Akaltun, M. S., Tıkız, C., Ünlü, Z., Vural, M., Aydeniz, B., & Karahan, A. Y. (2023b). The caregiver burden of informal caregivers for stroke patients with and without dysphagia: A multi-center, cross-sectional study in Türkiye. Turkish Journal of Physical Medicine and Rehabilitation, 69(4), 453–463. https://doi.org/10.5606/tftrd.2023.11894

He, L., Wang, J., Wang, F., Wang, L., Liu, Y., Zhou, F., & Xu, F. (2023). Depression status and functional outcome of patients with ischemic stroke and the impact on caregivers living in Chengdu: a cross-sectional study. Frontiers in Psychiatry, 14. https://doi.org/10.3389/fpsyt.2023.1166273

Jacobsson, M., Hargestam, M., Bååthe, F., & Hagqvist, E. (2022). (2023). Jacobsson, M., Hargestam, M., Bååthe, F., & Hagqvist, E. (2022). Organizational logic in times of crisis : How physicians narrate responses health services against the Covid-19 pandemic in Swedish hospitals Translated by. 14(June 2018). https://doi.org/10.4081/jphia.2019

Jaracz, K., Grabowska-Fudala, B., Kleka, P., Smelkowska, A., Pawlicka, A., Górna, K., & Tomczak, M. (2022). Development and Psychometric Properties of the Caregiver Burden Scale in Polish Caregivers of Stroke Patients. Psychology Research and Behavior Management, 15(February), 665 675. https://doi.org/10.2147/PRBM.S348972

Kavga, A., Kalemikerakis, I., Faros, A., Milaka, M., Tsekoura, D., Skoulatou, M., Tsatsou, I., & Govina, O. (2021). The effects of patients’ and caregivers’ characteristics on the burden of families caring for stroke survivors. International Journal of Environmental Research and Public Health, 18(14). https://doi.org/10.3390/ijerph18147298

Kazemi, A., Azimian, J., Mafi, M., Allen, K. A., & Motalebi, S. A. (2021). Caregiver burden and coping strategies in caregivers of older patients with stroke. BMC Psychology, 9(1), 1–10. https://doi.org/10.1186/s40359-021-00556-z

Kukreti, S., Strong, C., Chen, J.-S., Chen, Y.-J., Griffiths, M. D., Hsieh, M.-T., & Lin, C.-Y. (2023). The association of care burden with motivation of vaccine acceptance among caregivers of stroke patients during the COVID-19 pandemic: mediating roles of problematic social media use, worry, and fear. BMC Psychology, 11(1). https://doi.org/10.1186/s40359-023-01186-3

Kumar, P., Nagar, P., & Parmar, L. (2021). Quality of Life in Recent Stroke Patients and Burden on Caregivers in Gujarat state of Western India. JOURNAL OF PHARMACEUTICAL RESEARCH INTERNATIONAL, 33(37A), 45–53. https://doi.org/10.9734/JPRI/2021/v33i37A31978

Masoudian, N., Sarmadi, M., Najafi, R., Najafi, F., & Maleki, S. (2019). Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran. HOME HEALTH CARE MANAGEMENT AND PRACTICE, 31(4), 213–218. https://doi.org/10.1177/1084822319843137

Okonkwo, U. P., Agbo, C. F., Ibeneme, S. C., Igwe, E. S., Akosile, C. O., Onwuakagba, I. U., Emmanuel, O. C., Maduagwu, S. M., Ezenwankwo, E. F., & Ekechukwu, E. N. (2022). The Burden and Quality of life of Caregivers of Stroke Survivors with Cognitive Impairment in Selected Healthcare Facilities in Anambra State, Nigeria. Gerontology and Geriatric Medicine, 8. https://doi.org/10.1177/23337214221126329

Plöthner et al., (2022). Plöthner M, Schmidt K, De Jong L, Zeidler J, Damm K. Needs and preferencesÿ essence of informal caregivers regarding outpatient care for the elderly: a systematic literature review. BMC Geriatr. 2019;19(1):1–22. הארץ, 8.5.2017, 2003–2005.

Pratiwi, J. N. P. (2018). Rancangan Intervensi Psikologis Untuk Mengurangi Beban Perawatan Pada Para Perawat Lansia Magister Psikologi Profesi Fakultas Psikologi Universitas Muhammadiyah Surakarta 2018. http://eprints.ums.ac.id/id/eprint/67129

Risnarita, D., Pribadi, T., Furqoni, P. D., & Elliya, R. (2022). Depresi, kecemasan, stress dan beban perawatan pengasuh utama (caregiver) pasien dengan stroke. Holistik Jurnal Kesehatan, 16(7), 625–635. https://doi.org/10.33024/hjk.v16i7.8843

Rombough et al., 2019. (2016). Rombough RE, Howse EL, Bartfay WJ. Ketegangan pengasuh dan beban pengasuh dari pengasuh utama penderita stroke dengan dan tanpa afasia. Rehabilitasi Nurs 2019;31:199-209. doi: 10.1002/ j.2048-7940.2006.tb00136.x. Management Accounting Research, 30, 2–17. https://doi.org/10.1016/j.mar.2015.07.001

Ugur, H. G., & Erci, B. (2019). The effect of home care for stroke patients and education of caregivers on the caregiver burden and quality of life. Acta Clinica Croatica, 58(2), 321–332. https://doi.org/10.20471/acc.2019.58.02.16

Wang, J., Cui, J., Tu, S., Yang, R., & Zhao, L. (2022). Resilience and caregiving ability among caregivers of people with stroke: The mediating role of uncertainty in illness. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.788737

Yang, D. G., Gu, R., Sato, S., Zheng, F., Sano, M., Yashima, C., Eguchi, J., Ishida, T., Kawaguchi, M., Kubo, J., & Kakuda, W. (2020). The Ability for Basic Movement Scale II Can Predict Functional Outcome and Discharge Destination in Stroke Patients. Journal of Stroke and Cerebrovascular Diseases, 29(1), 104484. https://doi.org/10.1016/j.jstrokecerebrovasdis.2019.104484

Zhu W et al., 2019. (2023). . Zhu W, Jiang Y. A meta-analytic study of predictors for informal caregiver burden in patients with stroke. J Stroke Cerebrovasc Dis 2018;27:3636-46. doi: 10.1016/j.jstroke care brovasdis.2018.08.037. 13(2), 101–114.

Adelman et al., 2019. (2011). Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Beban pengasuh: Tinjauan klinis. JAMA 2019;311:1052-60. doi: 10.1001/jama.2014.304. In Paper Knowledge . Toward a Media History of Documents (Vol. 7, Issue 2).

Akosile, C. O., Banjo, T. O., Okoye, E. C., Ibikunle, P. O., & Odole, A. C. (2018). Informal caregiving burden and perceived social support in an acute stroke care facility. Health and Quality of Life Outcomes, 16(1), 1–7. https://doi.org/10.1186/s12955-018-0885-z

Ariska, Y. N., Handayani, P. A., & Hartati, E. (2020). Faktor yang Berhubungan dengan Beban Caregiver dalam Merawat Keluarga yang Mengalami Stroke. Holistic Nursing and Health Science, 3(1), 52–63. https://doi.org/10.14710/hnhs.3.1.2020.52-63

Béjot, Y., Daubail, B., & Giroud, M. (2016). Epidemiology of stroke and transient ischemic attacks: Current knowledge and perspectives. Revue Neurologique, 172(1), 59–68. https://doi.org/10.1016/j.neurol.2015.07.013

Çelik, A., & Kara, B. (2019). The relationship between the stroke survivors’ functional status and their informal caregivers’ burden and quality of life. AIMS MEDICAL SCIENCE, 6(1), 115–127. https://doi.org/10.3934/medsci.2019.1.115

Chafjiri, R. T., Navabi, N., Shamsalinia, A., & Ghaffari, F. (2017). The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. Clinical Interventions in Aging, 12, 453–458. https://doi.org/10.2147/CIA.S121285

David et al., 2021. (2017). David C, Namasivayam-MacDonald AM, Shune SE. Contributors to poststroke dysphagia-related caregiver burden. Am J Speech Lang Pathol 2021;30:1061-73. doi: 10.1044/2021_AJSLP-20-00250. Journal of Chemical Information and Modeling, 53(9), 1689–1699. file:///C:/Users/User/Downloads/fvm939e.pdf

Fang, L., Dong, M., Fang, W., & Zheng, J. (2022). Relationships between care burden, resilience, and depressive symptoms among the main family caregivers of stroke patients: A cross-sectional study. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.960830

Freytes et al., 2021. (2023). Freytes IM, Sullivan M, Schmitzberger M, LeLaurin J, Orozco T, Eliazar Macke N, et al. Types of stroke-related deficits and their impact on family caregiver’s depressive symptoms, burden, and quality of life. Disabil Health J 2021;14:101019. doi: 10.1016/. Solusi, 21(4), 792. https://doi.org/10.26623/slsi.v21i4.7531

Giray, E., Eyigör, S., Çalık, Y., Gezer, İ. A., Sarı, A., Umay, E., Akaltun, M. S., Tıkız, C., Ünlü, Z., Vural, M., Aydeniz, B., & Karahan, A. Y. (2023a). The caregiver burden of informal caregivers for stroke patients with and without dysphagia: A multi-center, cross-sectional study in Türkiye. Turkish Journal of Physical Medicine and Rehabilitation, 69(4), 453–463. https://doi.org/10.5606/tftrd.2023.11894

Giray, E., Eyigör, S., Çalık, Y., Gezer, İ. A., Sarı, A., Umay, E., Akaltun, M. S., Tıkız, C., Ünlü, Z., Vural, M., Aydeniz, B., & Karahan, A. Y. (2023b). The caregiver burden of informal caregivers for stroke patients with and without dysphagia: A multi-center, cross-sectional study in Türkiye. Turkish Journal of Physical Medicine and Rehabilitation, 69(4), 453–463. https://doi.org/10.5606/tftrd.2023.11894

He, L., Wang, J., Wang, F., Wang, L., Liu, Y., Zhou, F., & Xu, F. (2023). Depression status and functional outcome of patients with ischemic stroke and the impact on caregivers living in Chengdu: a cross-sectional study. Frontiers in Psychiatry, 14. https://doi.org/10.3389/fpsyt.2023.1166273

Jacobsson, M., Hargestam, M., Bååthe, F., & Hagqvist, E. (2022). (2023). Jacobsson, M., Hargestam, M., Bååthe, F., & Hagqvist, E. (2022). Organizational logic in times of crisis : How physicians narrate responses health services against the Covid-19 pandemic in Swedish hospitals Translated by. 14(June 2018). https://doi.org/10.4081/jphia.2019

Jaracz, K., Grabowska-Fudala, B., Kleka, P., Smelkowska, A., Pawlicka, A., Górna, K., & Tomczak, M. (2022). Development and Psychometric Properties of the Caregiver Burden Scale in Polish Caregivers of Stroke Patients. Psychology Research and Behavior Management, 15(February), 665–675. https://doi.org/10.2147/PRBM.S348972

Kavga, A., Kalemikerakis, I., Faros, A., Milaka, M., Tsekoura, D., Skoulatou, M., Tsatsou, I., & Govina, O. (2021). The effects of patients’ and caregivers’ characteristics on the burden of families caring for stroke survivors. International Journal of Environmental Research and Public Health, 18(14). https://doi.org/10.3390/ijerph18147298

Kazemi, A., Azimian, J., Mafi, M., Allen, K. A., & Motalebi, S. A. (2021). Caregiver burden and coping strategies in caregivers of older patients with stroke. BMC Psychology, 9(1), 1–10. https://doi.org/10.1186/s40359-021-00556-z

Kukreti, S., Strong, C., Chen, J.-S., Chen, Y.-J., Griffiths, M. D., Hsieh, M.-T., & Lin, C.-Y. (2023). The association of care burden with motivation of vaccine acceptance among caregivers of stroke patients during the COVID-19 pandemic: mediating roles of problematic social media use, worry, and fear. BMC Psychology, 11(1). https://doi.org/10.1186/s40359-023-01186-3

Kumar, P., Nagar, P., & Parmar, L. (2021). Quality of Life in Recent Stroke Patients and Burden on Caregivers in Gujarat state of Western India. Journal Of Pharmaceutical Research International, 33(37A), 45–53. https://doi.org/10.9734/JPRI/2021/v33i37A31978

Masoudian, N., Sarmadi, M., Najafi, R., Najafi, F., & Maleki, S. (2019). Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran. HOME HEALTH CARE MANAGEMENT AND PRACTICE, 31(4), 213–218. https://doi.org/10.1177/1084822319843137

Okonkwo, U. P., Agbo, C. F., Ibeneme, S. C., Igwe, E. S., Akosile, C. O., Onwuakagba, I. U., Emmanuel, O. C., Maduagwu, S. M., Ezenwankwo, E. F., & Ekechukwu, E. N. (2022). The Burden and Quality of life of Caregivers of Stroke Survivors with Cognitive Impairment in Selected Healthcare Facilities in Anambra State, Nigeria. Gerontology and Geriatric Medicine, 8. https://doi.org/10.1177/23337214221126329

Plöthner et al., 2019. (2022). Plöthner M, Schmidt K, De Jong L, Zeidler J, Damm K. Needs and preferencesÿ essence of informal caregivers regarding outpatient care for the elderly: a systematic literature review. BMC Geriatr. 2019;19(1):1–22. הארץ, 8.5.2017, 2003–2005.

Pratiwi, J. N. P. (2018). Rancangan Intervensi Psikologis Untuk Mengurangi Beban Perawatan Pada Para Perawat Lansia Magister Psikologi Profesi Fakultas Psikologi Universitas Muhammadiyah Surakarta 2018. http://eprints.ums.ac.id/id/eprint/67129

Risnarita, D., Pribadi, T., Furqoni, P. D., & Elliya, R. (2022). Depresi, kecemasan, stress dan beban perawatan pengasuh utama (caregiver) pasien dengan stroke. Holistik Jurnal Kesehatan, 16(7), 625–635. https://doi.org/10.33024/hjk.v16i7.8843

Rombough et al., 2019. (2016). Rombough RE, Howse EL, Bartfay WJ. Ketegangan pengasuh dan beban pengasuh dari pengasuh utama penderita stroke dengan dan tanpa afasia. Rehabilitasi Nurs 2019;31:199-209. doi: 10.1002/ j.2048-7940.2006.tb00136.x. Management Accounting Research, 30, 2–17. https://doi.org/10.1016/j.mar.2015.07.001

Ugur, H. G., & Erci, B. (2019). The effect of home care for stroke patients and education of caregivers on the caregiver burden and quality of life. Acta Clinica Croatica, 58(2), 321–332. https://doi.org/10.20471/acc.2019.58.02.16

Wang, J., Cui, J., Tu, S., Yang, R., & Zhao, L. (2022). Resilience and caregiving ability among caregivers of people with stroke: The mediating role of uncertainty in illness. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.788737

Yang, D. G., Gu, R., Sato, S., Zheng, F., Sano, M., Yashima, C., Eguchi, J., Ishida, T., Kawaguchi, M., Kubo, J., & Kakuda, W. (2020). The Ability for Basic Movement Scale II Can Predict Functional Outcome and Discharge Destination in Stroke Patients. Journal of Stroke and Cerebrovascular Diseases, 29(1), 104484. https://doi.org/10.1016/j.jstrokecerebrovasdis.2019.104484

Zhu W et al., (2019). . Zhu W, Jiang Y. A meta-analytic study of predictors for informal caregiver burden in patients with stroke. J Stroke Cerebrovasc Dis 2018;27:3636-46. doi: 10.1016/j.jstroke care brovasdis.2018.08.037. 13(2), 101–11.

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2025-06-10

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