¹Cau Kim Jiu,²Eristia Novarianda,³Usman,⁴Hartono,⁵Wuriani,⁶Kartika Setia Purdani,⁷Afriyanto

^1,2,3,4,5 Nursing Department, Institut Teknologi dan Kesehatan Muhammadiyah Kalimantan Barat, Pontianak-West Kalimantan.Indonesia

⁶Nursing Study Program, Faculty of Health and Pharmacy, University of Muhammadiyah East Kalimantan, Indonesia

⁷Faculty of Health Science, Public Health Department, University Muhammadiyah Bengkulu, Indonesia

Taking care of a family member(s) who suffers from stroke at home especially during the covid-19 pandemic time is unquestionably not easy. This study aimed at exploring the experience of family-caregivers in caring for post-stroke patients at home during the covid-19 pandemic. This qualitative research employed a phenomenological approach with participants consisting of 14 family members who have been caring for post-stroke patients at home during the Covid-19 pandemic in the Pontianak City area. This research began with observation for 3 months which was then followed by interviews and FGDs. The data obtained from the results of in-depth interviews and FGDs were processed using content analysis. The result of his study generated 5 themes regarding the experience of family caregivers in caring for post-stroke patients at home during the Covid-19 pandemic including 1) Changes in caregiver roles, 2) engagement values, 3) spiritual values, 4) Isolation in the surrounding community, 5) The experience of situational anxiety. Considering that both stroke survivors and caregivers of post-stroke patients do not only face several problems and conditions related to stroke and stroke recovery as well as community stigma, but several live scenarios are also provided for them especially during the COVID-19 pandemic. Therefore, further community reintegration ought to exist in the rehabilitation where it can prepare someone who used to suffer from stroke to have ability to do self-reorganization psychologically, physically and socially.

caregiver, covid-19, experience, family, post-stroke

1) AARP. (2019). A New Generation Discovers the Rewards of Caregiving. AARP Magazine. https://www.aarp.org/caregiving/stories/caregiver-roles/#:~:text=The Changing Roles of the Caregiver&text=Besides juggling multiple responsibilities at,of weeks%2C months and years.

2) Agianto and Nuntaboot, K. (2018). Role and function of family in care of patients with stroke in community. Dunia Keperawatan, 6(1), 134–144.

3) AHA. (2021). 2021 Heart Disease & stroke statistical update fact sheet global burden of disease. American Heart Association, Cvd, 1–3.

4) Araújo, É. D. F., Viana, R. T., Teixeira-Salmela, L. F., Lima, L. A. O., & De Morais Faria, C. D. C. (2019). Self-rated health after stroke: A systematic review of the literature. BMC Neurology, 19(1), 1–14. https://doi.org/10.1186/s12883-019- 1448-6

5) Avvantaggiato, C., Amoruso, L., P, L. M. M., Mimmo, M. A., M, D. B., Cinone, N., Santoro, L., Stuppiello, L., Turitto, A., Ciritella, C., Fiore, P., & Santamato, A. (2021). Ischemic Stroke in a 29-Year-Old Patient with COVID-19 : A Case Report. 334–340. https://doi.org/10.1159/000515457

6) Bettger, H. &. (2018). Parenting after stroke: a systematic review. Topics in Stroke Rehabilitation, 25(5), 384–392. https://doi.org/10.1080/10749357.2018.1452366

7) Broussy, S., Rouanet, F., Lesaine, E., Domecq, S., Kret, M., Maugeais, M., Aly, F., Dehail, P., Bénard, A., Wittwer, J., Salamon, R., Sibon, I., & Saillour-Glenisson, F. (2019). Post-stroke pathway analysis and link with one year sequelae in a French cohort of stroke patients: The PAPASePA protocol study. BMC Health Services Research, 19(1), 1–13. https://doi.org/10.1186/s12913-019-4522-2

8) Burns, S. P., Fleming, T. K., Webb, S. S., Kam, A. S. H., Fielder, J. D. P., Kim, G. J., Hu, X., Hill, M. T., & Kringle, E. A. (2022). Stroke Recovery During the COVID-19 Pandemic: A Position Paper on Recommendations for Rehabilitation. Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2022.04.004

9) De Campos, L. M., Martins, B. M., Cabral, N. L., Franco, S. C., Pontes-Neto, O. M., Mazin, S. C., & Dos Reis, F. I. (2017). How many patients become functionally dependent after a stroke? A 3-year population-based study in Joinville, Brazil. PLoS ONE, 12(1), 1–12. https://doi.org/10.1371/journal.pone.0170204

10) Deng, C. Y., Lu, Q., Yang, L., Wu, R., Liu, Y., Li, L. Y., Cheng, S., Wei, S., Wang, Y., Huang, Y., Fu, L., & Yue, Z. (2019). Factors associated with stigma in community-dwelling stroke survivors in China: A cross-sectional study. Journal of the Neurological Sciences, 407(April). https://doi.org/10.1016/j.jns.2019.116459

11) Department of Health of Samarinda Province. (2017). The East Kalimantan Health Profile in 2017

12) Dula, A. N., Brown, G. G., Aggarwal, A., & Clark, K. L. (2020). Decrease in stroke diagnoses during the COVID-19 pandemic: Where did all our stroke patients go? JMIR Aging, 3(2), 1–10. https://doi.org/10.2196/21608

13) Frumkin, H., & Haines, A. (2019). Global Environmental Change and Noncommunicable Disease Risks. Annual Review of Public Health, 40(1), 261–282. https://doi.org/10.1146/annurev-publhealth-040218-043706

14) Garnett, A., Ploeg, J., Markle-Reid, M., & Strachan, P. H. (2022). Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study. BMC Health Services Research, 22(1), 1–15. https://doi.org/10.1186/s12913-022-07804-x

15) Gillespie, D., & Campbell, F. (2011). Effect of stroke on family carers and family relationships. Nursing Standard (Royal College of Nursing (Great Britain): 1987), 26(2), 39–46. https://doi.org/10.7748/ns2011.09.26.2.39.c8707

16) Goshua, G., Pine, A. B., Meizlish, M. L., Chang, C. H., Zhang, H., Bahel, P., Baluha, A., Bar, N., Bona, R. D., Burns, A. J., Dela Cruz, C. S., Dumont, A., Halene, S., Hwa, J., Koff, J., Menninger, H., Neparidze, N., Price, C., Siner, J. M., … Lee, A. I. (2020). Endotheliopathy in COVID-19-associated coagulopathy: evidence from a single-centre, cross-sectional study. The Lancet Haematology, 7(8), e575–e582. https://doi.org/10.1016/S2352-3026(20)30216-7

17) Haley, W. E., Marino, V. R., Sheehan, O. C., Rhodes, J. D., Kissela, B., & Roth, D. L. (2019). Stroke Survivor and Family Caregiver Reports of Caregiver Engagement in Stroke Care. Rehabilitation Nursing, 44(6), 302–310. https://doi.org/10.1097/rnj.0000000000000100

18) Hesamzadeh, Dalvandi, Maddah, et all. (2015). Family adaptation to stroke: A metasynthesis of qualitative research based on double ABCX model. Asian Nursing Research, 9(3), 177–184. https://doi.org/10.1016/j.anr.2015.03.005

19) Institute for Health Metrics and Evaluation. (2020). Country Profile of Indonesia. 1–7.

20) Jennifer L. Rowe. (2021). Who Am I Now? The Ever-Changing Role of the Caregiver. TODAY’S CAREGIVER. http://www.eldercare.gov/

21) Kamalakannan, S., Gudlavalleti Venkata, M., Prost, A., Natarajan, S., Pant, H., Chitalurri, N., Goenka, S., & Kuper, H. (2016). Rehabilitation Needs of Stroke Survivors After Discharge From Hospital in India. Archives of Physical Medicine and Rehabilitation, 97(9), 1526-1532.e9. https://doi.org/10.1016/j.apmr.2016.02.008

22) Karunia, E. (2016). The Relationship Between Family Support and Independence Activity of Daily Living Post-Sroke. Jurnal Psikologi UGM, August, 213–224. https://doi.org/10.20473/jbe.v4i2.2016.213

23) Karuniawati, D. (2017). The Relationship Between Family Support and Depression Levels in Post-Stroke Patients at the Regional General Hospital dr. Moewardi Surakarta.

24) Kulshreshtha, A., Anderson, L. M., Goyal, A., & Keenan, N. L. (2012). Stroke in South Asia: A systematic review of epidemiologic literature from 1980 to 2010. Neuroepidemiology, 38(3), 123–129. https://doi.org/10.1159/000336230

25) Lobo, E. H., Abdelrazek, M., Grundy, J., Kensing, F., Livingston, P. M., Rasmussen, L. J., Islam, S. M. S., & Frølich, A. (2021). Caregiver Engagement in Stroke Care: Opportunities and Challenges in Australia and Denmark. Frontiers in Public Health, 9(November), 1–6. https://doi.org/10.3389/fpubh.2021.758808

26) Maharani, A., Id, S., Praveen, D., & Id, D. O. (2019). Cardiovascular disease risk factor prevalence and estimated 10-year cardiovascular risk scores in Indonesia: The SMARThealth Extend study. 1–13.

27) Mahyarni, Meflinda, A., & Indrayani, H. (2018). The investigation of the effects of spiritual values and behaviors on business development and performance of Muslim preneurship. International Journal of Law and Management, 60(2), 730–740. https://doi.org/10.1108/IJLMA-03-2017-0027

28) Mao, L., Jin, H., Wang, M., Hu, Y., Chen, S., He, Q., Chang, J., Hong, C., Zhou, Y., Wang, D., Miao, X., Li, Y., & Hu, B. (2020). Neurologic Manifestations of Hospitalized Patients with Coronavirus Disease 2019 in Wuhan, China. JAMA Neurology, 77(6), 683–690. https://doi.org/10.1001/jamaneurol.2020.1127

29) Martinez, R., Lloyd-Sherlock, P., Soliz, P., Ebrahim, S., Vega, E., Ordunez, P., & McKee, M. (2020). Trends in premature avertable mortality from non-communicable diseases for 195 countries and territories, 1990–2017: a population-based study. The Lancet Global Health, 8(4), e511–e523. https://doi.org/10.1016/S2214-109X(20)30035-8

30) Mercer, A. J. (2018). Updating the epidemiological transition model. Epidemiology and Infection, 146(6), 680–687. https://doi.org/10.1017/S0950268818000572

31) Nannoni, S., Groot, R. De, Bell, S., & Markus, H. S. (2021). Stroke in COVID-19 : A systematic review and meta-analysis. 16(2), 137–149. https://doi.org/10.1177/1747493020972922

32) Nayeri, D. N. et all. (2014). Investigating the effects of a family-centered care program on stroke patients’ adherence to their therapeutic regimens. 47(1), 88–96.

33) Northcott, Moss, Harrison, and H. (2015). A systematic review of the impact of stroke on social support and social networks: Associated factors and patterns of change. https://doi.org/10.1177/0269215515602136

34) O’Callaghan, C., Brooker, J., de Silva, W., Glenister, D., Melia, Cert, A., Symons, X., Kissane, D., & Michael, N. (2019). Patients’ and Caregivers’ Contested Perspectives on Spiritual Care for Those Affected by Advanced Illnesses: A Qualitative Descriptive Study. Journal of Pain and Symptom Management, 58(6), 977–988. https://doi.org/10.1016/j.jpainsymman.2019.08.004

35) Obembe, A., Mapayi, B., Johnson, O., Agunbiade, T., & Emechete, A. (2013). Community reintegration in stroke survivors: Relationship with motor function and depression. Hong Kong Physiotherapy Journal, 31(2), 69–74. https://doi.org/10.1016/j.hkpj.2013.04.001

36) Pang, M. Y. C. (2013). Community reintegration after stroke. Hong Kong Physiotherapy Journal, 31(2), 57. https://doi.org/10.1016/j.hkpj.2013.07.002

37) Pérez-Cruz, M., Parra-Anguita, L., López-Martínez, C., Moreno-Cámara, S., & Del-Pino-Casado, R. (2019). Burden and anxiety in family caregivers in the hospital that debut in caregiving. International Journal of Environmental Research and Public Health, 16(20), 1–14. https://doi.org/10.3390/ijerph16203977

38) Philp, I., Brainin, M., Walker, M. F., Ward, A. B., Gillard, P., Shields, A. L., & Norrving, B. (2013). Development of a poststroke checklist to standardize follow-up care for stroke survivors. Journal of Stroke and Cerebrovascular Diseases, 22(7), e173–e180. https://doi.org/10.1016/j.jstrokecerebrovasdis.2012.10.016

39) 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

40) Qi, X., Keith, K. A., & Huang, J. H. (2020). COVID-19 and stroke: A review. January.

41) RAZAK, R. R. A. (2020). Importance of spirituality. New Straits Times. https://www.nst.com.my/opinion/letters/2020/09/625375/importance-spirituality#:~:text=Religious values in the spiritual,nature and fellow human beings.

42) Revenson, T. A., Griva, K., Luszczynska, A., Morrison, V., Panagopoulou, E., Vilchinsky, N., & Hagedoorn, M. (2016). Caregiving in the illness context. In Caregiving in the Illness Context. https://doi.org/10.1057/9781137558985

43) Richards, N. C., Gouda, H. N., Durham, J., Rampatige, R., Rodney, A., & Whittaker, M. (2016). Disability, noncommunicable disease and health information. Bulletin of the World Health Organization, 94(3), 230–332. https://doi.org/10.2471/BLT.15.156869

44) Sama, S. R., Quinn, M. M., Galligan, C. J., Karlsson, N. D., Gore, R. J., Kriebel, D., Prentice, J. C., Osei-Poku, G., Carter, C. N., Markkanen, P. K., & Lindberg, J. E. (2021). Impacts of the COVID-19 Pandemic on Home Health and Home Care Agency Managers, Clients, and Aides: A Cross-Sectional Survey, March to June, 2020. Home Health Care Management and Practice, 33(2), 125–129. https://doi.org/10.1177/1084822320980415

45) Sarfo et al. (2017). Stroke-Related Stigma among West Africans: Patterns and Predictors. HHS Public Access, 375, 270– 274. https://doi.org/10.1016/j.jns.2017.02.018.Stroke-Related

46) Somerville, E., Minor, B., Keglovits, M., Yan, Y., & Stark, S. (2019). Effect of a Novel Transition Program on Disability After Stroke: A Trial Protocol. JAMA Network Open, 2(10), e1912356. https://doi.org/10.1001/jamanetworkopen.2019.12356

47) Spence, J. D., Freitas, R. De, & Pettigrew, L. C. (2020). Mechanisms of Stroke in COVID-19. 4, 451–458. https://doi.org/10.1159/000509581

48) Srivastava, P. K., Zhang, S., Xian, Y., Xu, H., Rutan, C., Alger, H. M., Walchok, J. G., Williams, J. H., De Lemos, J. A., DeckerPalmer, M. R., Alhanti, B., Elkind, M. S. V., Messé, S. R., Smith, E. E., Schwamm, L. H., & Fonarow, G. C. (2021). Treatment and Outcomes of Patients with Ischemic Stroke during COVID-19: An Analysis from Get with the Guidelines-Stroke. Stroke, October, 3225–3232. https://doi.org/10.1161/STROKEAHA.120.034414

49) Sveriges officiella statistik. (2021). Statistics on Stroke 2020. The National Board of Health and Welfare, 1, 2–5.

50) Taneasa White. (2022). What Is Situasional Anxiety? PsychCentral. https://psychcentral.com/anxiety/situationalanxiety#how-to-cope

51) The Health Minister of the Republic Indonesia. (2018a). Indonesia Basic Health Research 2018. In Kementerian Kesehatan RI. https://doi.org/1 Desember 2013

52) The Health Minister of the Republic Indonesia. (2018b). The Report of Basic Health Research of West Kalimantan in 2018. Dinas Kesehatan Kalimantan Barat, 1–493. https://dinkes.kalbarprov.go.id/wpcontent/uploads/2019/05/Laporan-RKD-2018-Kalbar.pdf

53) Torregosa, Sada, P. (2018). Dealing with stroke: Perspectives from stroke survivors and stroke caregivers from an underserved Hispanic community. August 2016, 361–369. https://doi.org/10.1111/nhs.12414

54) Wang, Y., Tyagi, S., Hoenig, H., Lee, K. E., Venketasubramanian, N., Menon, E., De Silva, D. A., Yap, P., Tan, B. Y., Young, S. H., Ng, Y. S., Tu, T. M., Ang, Y. H., Kong, K. H., Singh, R., Merchant, R. A., Chang, H. M., Ning, C., Cheong, A., & Koh, G. C. H. (2021). Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting. BMC Public Health, 21(1), 1–14. https://doi.org/10.1186/s12889-021-11991-3

55) Zarzycki, M., & Morrison, V. (2021). Getting back or giving back: understanding caregiver motivations and willingness to provide informal care. Health Psychology and Behavioral Medicine, 9(1), 636–661. https://doi.org/10.1080/21642850.2021.1951737

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