Availability and Burden of Family Caregivers in Caring for a Recurrent Stroke Survivor in the Community During a Pandemic

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DOI:

https://doi.org/10.31674/mjn.2023.v14i03.009

Abstract

Family caregivers significantly influence the ability of stroke survivors to thrive in the community despite their disability. Recently, family caregivers have been faced with the challenges of fulfilling their domestic duties while acting as the coordinators of medical and nursing care for their patients. Caring for a family member with disability is a challenging task that may even be magnified by the presence of calamities and state emergencies. This paper examined the burdens and challenges experienced by family caregivers during the COVID-19 threat. This research utilized an illustrative case study approach, which typically focuses on one or two instances of an event to illustrate a phenomenon while highlighting the contextual elements of the case. It was discovered that the emergence of a highly contagious and deadly virus required a major adjustment in the lives of family caregivers caring for family members with disabilities, especially in communities where local transmission is rampant. Despite having local policies that have been set in place to prevent the continuing transmission of new COVID-19 infections, these restrictions highly affected the way of life in the communities and accentuated the lack of community resources for medical emergencies.

Keywords:

Family Caregiving, Pandemic, Stroke Survivor, Recurrent Stroke, Community Health, Case Study

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References

Achilike, S., Beauchamp, J. E., Cron, S. G., Okpala, M., Payen, S. S., Baldridge, L., ... & Sharrief, A. (2020). Caregiver burden and associated factors among informal caregivers of stroke survivors. Journal of Neuroscience Nursing, 52(6), 277-283. https://doi.org/10.1097/JNN.0000000000000552

Ahmad, S. A., Supandiman, I., Markam, S., Estiasari, R., & Hankey, G. (2018). The effect of caregiver education program on functional independence and Mortality in first-ever stroke. Malaysian Journal of Medical Research (MJMR), 2(2), 57-67. https://doi.org/10.31674/mjmr.2018.v02i02.009

Baracchini, C., Pieroni, A., Viaro, F., Cianci, V., Cattelan, A. M., Tiberio, I., ... & Causin, F. (2020). Acute stroke management pathway during Coronavirus-19 pandemic. Neurological Sciences, 41(5), 1003-1005. https://doi.org/10.1007/s10072-020-04375-9

Boyce, A. S. (2017). Lessons learned using a values-engaged approach to attend to culture, diversity, and equity in a STEM program evaluation. Evaluation and Program Planning, 64, 33-43. https://doi.org/10.1016/j.evalprogplan.2017.05.018

Bullrich, M. B., Fridman, S., Mandzia, J. L., Mai, L. M., Khaw, A., Gonzalez, J. C. V., ... & Sposato, L. A. (2020). COVID-19: stroke admissions, emergency department visits, and prevention clinic referrals. Canadian Journal of Neurological Sciences, 47(5), 693-696. https://doi.org/10.1017/cjn.2020.101

Camicia, M., Lutz, B. J., Markoff, N., & Catlin, A. (2019). Determining the needs of family caregivers of stroke patients during inpatient rehabilitation using interview, art, and survey. Rehabilitation Nursing Journal, 44(6), 328-337. https://doi.org/10.1097/RNJ.0000000000000129

Candela, A. G. (2019). Exploring the Function of Member Checking. The Qualitative Report, 24(3), 619-628. https://doi.org/10.46743/2160-3715/2019.3726

Caro, C. C., Costa, J. D., & Da Cruz, D. M. C. (2018). Burden and quality of life of family caregivers of stroke patients. Occupational Therapy in Health Care, 32(2), 154-171. https://doi.org/10.1080/07380577.2018.1449046

Carota, A., & Bogousslavsky, J. (2018). Catastrophe reaction and emotionalism. Neurologic-Psychiatric Syndromes in Focus-Part I, 41, 50-60. https://doi.org/10.1159/000475695

Chen, L., Xiao, L. D., Chamberlain, D., & Newman, P. (2021). Enablers and barriers in hospital‐to‐home transitional care for stroke survivors and caregivers: A systematic review. Journal of Clinical Nursing, 30(19-20), 2786-2807. https://doi.org/10.1111/jocn.15807

Choi-Kwon, S., & Kim, J. S. (2022). Anger, a Result and Cause of Stroke: A Narrative Review. Journal of Stroke, 24(3), 311-322. https://doi.org/10.5853/jos.2022.02516

Chow, E. O. (2018). Narrative group intervention to reconstruct meaning of life among stroke survivors: A randomized clinical trial study. Neuropsychiatry (London), 8(4), 1216–1226. https://doi.org/10.4172/Neuropsychiatry.1000450

de Sousa, L. R. T., Sequeira, C., Ferré-Grau, C., & Araújo, O. (2022). Impact of the COVID-19 outbreak on the difficulties and burden experienced by family caregivers of older dependent persons. The Journal of Mental Health Training, Education and Practice. 17(4), 355-365. https://doi.org/10.1108/JMHTEP-04-2021-0036

Em, S., Bozkurt, M., Caglayan, M., Ceylan Cevik, F., Kaya, C., Oktayoglu, P., & Nas, K. (2017). Psychological health of caregivers and association with functional status of stroke patients. Topics in Stroke Rehabilitation, 24(5), 323-329. https://doi.org/10.1080/10749357.2017.1280901

Farahani, M. A., Bahloli, S., JamshidiOrak, R., & Ghaffari, F. (2020). Investigating the needs of family caregivers of older stroke patients: a longitudinal study in Iran. BMC Geriatrics, 20(1), 1-12. https://doi.org/10.1186/s12877-020-01670-0

Grefkes, C., & Fink, G. R. (2020). Recovery from stroke: current concepts and future perspectives. Neurological Research and Practice, 2(1), 1-10.

https://doi.org/10.1186/s42466-020-00060-6

Hamzah, A., Masingboon, K., & Duengpaeng, S. (2018). A Comparison of Family needs and received Care as Perceived by Family Members of Traumatic Brain Injury Patients. The Malaysian Journal of Nursing (MJN), 10(2), 106-112. https://doi.org/10.31674/mjn.2018.v10i02.013

Heale, R., & Twycross, A. (2018). What is a case study? Evidence-based Nursing, 21(1), 7-8. https://dx.doi.org/10.1136/eb-2017-102845

Hekmatpou, D., Baghban, E. M., & Dehkordi, L. M. (2019). The effect of patient care education on burden of care and the quality of life of caregivers of stroke patients. Journal of Multidisciplinary Healthcare, 12, 211. https://doi.org10.2147/JMDH.S196903

Jellema, S., Wijnen, M. A., Steultjens, E. M., Nijhuis-van der Sanden, M. W., & van der Sande, R. (2019). Valued activities and informal caregiving in stroke: a scoping review. Disability and Rehabilitation, 41(18), 2223-2234. https://doi.org/10.1080/09638288.2018.1460625

Katan, M., & Luft, A. (2018, April). Global Burden of Stroke. Seminars in Neurology, 38(02) 208-211. Thieme Medical Publishers. https://doi.org/10.1055/s-0038-1649503

Kavga, A., Kalemikerakis, I., Faros, A., Milaka, M., Tsekoura, D., Skoulatou, M., ... & 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), 7298. https://doi.org/10.3390/ijerph18147298

Kerr, M. E. (2019). Bowen theory's secrets: Revealing the hidden life of families. WW Norton & Company. https://doi.org/10.1111/jmft.12400

Keller, M. N., & Noone, R. J. (Eds.). (2019). Handbook of Bowen Family Systems Theory and research methods: A systems model for family research. Routledge. https://doi.org/10.4324/9781351103282

Khoshnam, S. E., Winlow, W., Farzaneh, M., Farbood, Y., & Moghaddam, H. F. (2017). Pathogenic mechanisms following ischemic stroke. Neurological Sciences, 38(7), 1167-1186. https://doi.org/10.1007/s10072-017-2938-1

Kirkevold, M., Kildal Bragstad, L., Bronken, B. A., Kvigne, K., Martinsen, R., Gabrielsen Hjelle, E., ... & Sveen, U. (2018). Promoting psychosocial well-being following stroke: study protocol for a randomized, controlled trial. BMC Psychology, 6(1), 1-12. https://doi.org/10.1186/s40359-018-0223-6

Ludin, S. M., & Othman, H. (2019). The family caregivers' needs on care at home with severe traumatic brain injury survivors: a review. The Malaysian Journal of Nursing, 11(2). https://doi.org/10.31674/mjn.2019.v11i02.008

Maher, C., Hadfield, M., Hutchings, M., & De Eyto, A. (2018). Ensuring rigor in qualitative data analysis: A design research approach to coding combining NVivo with traditional material methods. International Journal of Qualitative Methods, 17(1), 1609406918786362. https://doi.org/10.1177/1609406918786362

Maleki, M., Mahmoudi, M. R., Heydari, M. H., & Pho, K. H. (2020). Modeling and forecasting the spread and death rate of coronavirus (COVID-19) in the world using time series models. Chaos, Solitons & Fractals, 140, 110151. https://doi.org/10.1016/j.chaos.2020.110151

McCurley, J. L., Funes, C. J., Zale, E. L., Lin, A., Jacobo, M., Jacobs, J. M., ... & Vranceanu, A. M. (2019). Preventing chronic emotional distress in stroke survivors and their informal caregivers. Neurocritical Care, 30(3), 581-589. https://doi.org/10.1007/s12028-018-0641-6

Mirkowski, M., Pereira, S., Janzen, S., Mehta, S., Meyer, M., McClure, A., ... & Teasell, R. (2018). Caregiver availability for severe stroke results in improved functional ability at discharge from inpatient rehabilitation. Disability and Rehabilitation, 40(4),457-461.https://doi.org/10.1080/09638288.2016.1260652

Mohajan, H. K. (2018). Qualitative research methodology in social sciences and related subjects. Journal of Economic Development, Environment and People, 7(1), 23-48. https://doi.org/10.26458/jedep.v7i1.571

Mohammadi, S., Zabolypour, S., Ghaffari, F., & Arazi, T. (2019). The effect of family oriented discharge program on the level of preparedness for care-giving and stress experienced by the family of stroke survivors. Iranian Rehabilitation Journal, 17(2), 113-120. https://doi.org/10.32598/irj.17.2.113

Morelli, N., Barello, S., Mayan, M., & Graffigna, G. (2019). Supporting family caregiver engagement in the care of old persons living in hard-to-reach communities: A scoping review. Health & Social Care in the Community, 27(6), 1363-1374. https://doi.org/10.1111/hsc.12826

Nowell, L. S., Norris, J. M., White, D. E., & Moules, N. J. (2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1), 1609406917733847. https://doi.org/10.1177/1609406917733847

Papanagiotou, P., & Ntaios, G. (2018). Endovascular thrombectomy in acute ischemic stroke. Circulation: Cardiovascular Interventions, 11(1), e005362. https://doi.org/10.1161/CIRCINTERVENTIONS.117.005362

Phillips, D., Paul, G., Fahy, M., Dowling-Hetherington, L., Kroll, T., Moloney, B., ... & Lafferty, A. (2020). The invisible workforce during the COVID-19 pandemic: Family carers at the frontline. HRB Open Research, 3.

https://doi.org/10.12688/hrbopenres.13059.1

Pindus, D. M., Mullis, R., Lim, L., Wellwood, I., Rundell, A. V., Abd Aziz, N. A., & Mant, J. (2018). Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services–a systematic review and meta-ethnography. PloS One, 13(2), e0192533. https://doi.org/10.1371/journal.pone.0192533

Ping, M. F., Natalia, E., & Hurai, R. (2022). The Impact of Covid-19 to the Mental Health of Housewives and the Adaptation Process from a Cultural Perspective. The Malaysian Journal of Nursing (MJN), 13(3), 71-76. https://doi.org/10.31674/mjn.2022.v13i03.011

Pitthayapong, S., Thiangtam, W., Powwattana, A., Leelacharas, S., & Waters, C. M. (2017). A community-based program for family caregivers for post stroke survivors in Thailand. Asian Nursing Research, 11(2), 150-157. https://doi.org/10.1016/j.anr.2017.05.009

Ramazanu, S., Chisale, M. R., Baby, P., Wu, V. X., & Mbakaya, B. C. (2022). Meta‐synthesis of family communication patterns during post‐stroke vascular aphasia: Evidence to guide practice. Worldviews on Evidence‐Based Nursing, 19(4), 282-296. https://doi.org/10.1111/wvn.12580

Rohde, D., Gaynor, E., Large, M., Conway, O., Bennett, K., Williams, D. J., ... & Hickey, A. (2019). Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis. Topics in Stroke Rehabilitation, 26(3), 180-186. https://doi.org/10.1080/10749357.2019.1590972

Sheehan, J., Lannin, N. A., Laver, K., Reeder, S., & Bhopti, A. (2022). Primary care practitioners’ perspectives of discharge communication and continuity of care for stroke survivors in Australia: A qualitative descriptive study. Health & Social Care in the Community, 30(5), e2530-e2539. https://doi.org/10.1111/hsc.13696

Sutter-Leve, R., Passint, E., Ness, D., & Rindflesch, A. (2021). The caregiver experience after stroke in a covid-19 environment: A qualitative study in inpatient rehabilitation. Journal of Neurologic Physical Therapy, 45(1), 14. https://doi.org/10.1097/NPT.0000000000000336

Sya'diyah, H., Widayanti, D. M., Myra, M., & Efendi, F. (2022). Resilience Influenced with Anxiety Level among Family with Elderly in Facing the Covid-19 Pandemic: A Correlational Study. The Malaysian Journal of Nursing (MJN), 14(2), 138-142. https://doi.org/10.31674/mjn.2022.v14i02.023

Tong, S., & Ke, X. (2021). Family caregivers’ experiences of caring for stroke survivors A descriptive literature review. Faculty of Health and Occupational Studies, Department of Caring Sciences, University of Gavle, Sweden. https://www.diva-portal.org/smash/get/diva2:1575302/FULLTEXT01.pdf

Tsarkov, A., & Petlovanyi, P. (2019). Neuropsychiatric Aspects of a Common Problem:

Stroke. European Journal of Medical and Health Sciences (EJMED) 1(3),1-6. https://doi.org/10.24018/ejmed.2019.1.3.64

Tyagi, S., Koh, G. C. H., Luo, N., Tan, K. B., Hoenig, H., Matchar, D. B., ... & Tan, C. S. (2020). Dyadic approach to supervised community rehabilitation participation in an Asian setting post-stroke: exploring the role of caregiver and patient characteristics in a prospective cohort study. BMJ Open, 10(4), e036631. https://dx.doi.org/10.1136/bmjopen-2019-036631

Vallejo Jr, B. M., & Ong, R. A. C. (2020). Policy responses and government science advice for the COVID 19 pandemic in the Philippines: January to April 2020. Progress in Disaster Science, 7, 100115. https://doi.org/10.1016/j.pdisas.2020.100115

Wan-Fei, K., Hassan, S. T. S., Sann, L. M., Ismail, S. I. F., Raman, R. A., & Ibrahim, F. (2017). Depression, anxiety and quality of life in stroke survivors and their family caregivers: A pilot study using an actor/partner interdependence model. Electronic Physician, 9(8), 4924. https://doi.org/10.19082/4924

Wenzel, R. A., Zgoda, E. A., St Clair, M. C., & Knecht-Sabres, L. J. (2021). A qualitative study investigating stroke survivors’ perceptions of their psychosocial needs being met during rehabilitation. The Open Journal of Occupational Therapy, 9(2), 1-16. https://doi.org/10.15453/2168-6408.1691

Zhang, L., Sun, W., Wang, Y., Wang, X., Liu, Y., Zhao, S., ... & Yu, L. (2020). Clinical course and mortality of stroke patients with coronavirus disease 2019 in Wuhan, China. Stroke, 51(9), 2674-2682. https://doi.org/10.1161/STROKEAHA.120.030642

Published

01-01-2023

How to Cite

O. Uy, H. . (2023). Availability and Burden of Family Caregivers in Caring for a Recurrent Stroke Survivor in the Community During a Pandemic. The Malaysian Journal of Nursing (MJN), 14(3), 76-85. https://doi.org/10.31674/mjn.2023.v14i03.009

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