The essential care required by stroke survivors and families: an ethnography study

Submitted: 25 April 2024
Accepted: 14 July 2024
Published: 1 August 2024
Abstract Views: 123
PDF: 47
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Authors

From a cultural point of view, ethnographic research was needed to understand the essential care of stroke survivors and their families. Half of stroke survivors were dependent on family caregivers during neuroplasticity time, which could raise several burdens for both. This study aimed to analyze the essential care required for stroke survivors and their families. Focus ethnography design was employed with 64 participants selected purposively. The data collection methods were observation, in-depth interviews, and Focus Group Discussion (FGD). The techniques used were writing field notes for the content analysis, using thematic analysis to analyze data, and using COREX 32-items for reporting qualitative studies.The six themes identified were i) unclear information before discharge planning; ii)clear information from community nurses; iii) family brotherhood; iv) home visits; v) government health insurance obstacles; vi) counseling services for families. In this study, healthcare facilities with stroke services were preferred in stroke care, while optimal stroke care consisted of four main components that had to work together: health workers in health facilities, stroke survivors, family as successors of care in community settings, and the availability of health insurance facilities. In principle, the most important party in this situation was the family, including the nuclear or extended family; they could be the determinant in saving the lives of stroke survivors.

Dimensions

Altmetric

PlumX Metrics

Downloads

Download data is not yet available.

Citations

Pitthayapong S, Thiangtam W, Powwattana A, et al. A community based program for family caregivers for post stroke survivors in Thailand. Asian Nurs Res (Korean Soc Nurs Sci) 2017;11:150-7. DOI: https://doi.org/10.1016/j.anr.2017.05.009
Powers WJ, Rabinstein AA, Ackerson T, et al. 2018 Guidelines for the early management of patients with acute ischemic stroke: a guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke 2018;49:46-110. DOI: https://doi.org/10.1161/STR.0000000000000158
Somerville E, Minor B, Keglovits M, et al. Effect of a novel transition program on disability after stroke: a trial protocol. JAMA Netw open 2019;2:e1912356. DOI: https://doi.org/10.1001/jamanetworkopen.2019.12356
Frumkin H, Haines A. Global environmental change and noncommunicable disease risks. Annu Rev Public Health 2019;40:261-82. DOI: https://doi.org/10.1146/annurev-publhealth-040218-043706
Venketasubramanian, Yoon, Pandian N. Stroke epidemiology in South, East, and South-East Asia: a review. J Stroke 2017;19:286-94. DOI: https://doi.org/10.5853/jos.2017.00234
Martinez R, Lloyd-Sherlock P, Soliz P, et al. Trends in premature avertable mortality from non-communicable diseases for 195 countries and territories, 1990–2017: a population-based study. Lancet Glob Heal 2020;8:e511-23. DOI: https://doi.org/10.1016/S2214-109X(20)30035-8
Thompson SG, Barber PA, Gommans JH, et al. Geographic disparities in stroke outcomes and service access: a prospective observational study. Neurology 2022;99:e414-26. DOI: https://doi.org/10.1212/WNL.0000000000200526
Hu S, Cui B, Mlynash M, et al. Stroke epidemiology and stroke policies in China from 1980 to 2017: a systematic review and meta-analysis. Int J Stroke 2020;15:18-28. DOI: https://doi.org/10.1177/1747493019873562
Simbolon S, Hamid AYS, Mustikasari, Besral. The effectiveness of discharge planning stroke patient due to hypertension to improve patient satisfaction and independence. Enferm Clin 2019;29:703-8. DOI: https://doi.org/10.1016/j.enfcli.2019.06.011
Rayanti RE, Yoel LJL. Discharge planning of stroke patient in Regional General Hospital Ungaran. J Keperawatan Respati Yogyakarta 2020;7:94-8. DOI: https://doi.org/10.35842/jkry.v7i2.558
Nunes HJM, Queirós PJP. Patient with stroke: hospital discharge planning, functionality and quality of life. Rev Bras Enferm 2017;70:415-23. DOI: https://doi.org/10.1590/0034-7167-2016-0166
Andrew NE, Busingye D, Lannin NA, et al. The quality of discharge care planning in acute stroke care: influencing factors and association with postdischarge outcomes. J Stroke Cerebrovasc Dis 2018;27:583-90. DOI: https://doi.org/10.1016/j.jstrokecerebrovasdis.2017.09.043
Syafii Harahap H, Indrayana Y, Asih Putri S. Relationship between level of education and post-stroke cognitive status in hospital-based ischemic stroke survivors. MNJ (Malang Neurol Journal) 2021;7:1-6. DOI: https://doi.org/10.21776/ub.mnj.2021.007.01.1
Ohannessian R, Dhote-Burger P, Chauvin F, et al. Health policy for telestroke in France: a retrospective description from 2003 to 2016. Rev Neurol (Paris) 2019;175:390-5. DOI: https://doi.org/10.1016/j.neurol.2018.10.002
Kulcsar M, Gilchrist S, Geroge MG. Improving stroke outcomes in rural areas through Telestroke programs: an examination of barriers, facilitators, and state policies. Telemed e-Health 2014;20:3-10. DOI: https://doi.org/10.1089/tmj.2013.0048
Putra PA, Tresno T, Wahyu PS. Development of the National Institutes of Health Stroke Scale (NIHSS) for predicting disability and functional outcome to support discharge planning after ischemic stroke. J Ners 2019;14:413-7. DOI: https://doi.org/10.20473/jn.v14i3.17220
Fadilah N, Kusnanto, Nursalam, Rahariyani LD. Analysis of influencing factors of burden of caregiver among stroke patients at home. J Public Health Africa 2019;10:1188. DOI: https://doi.org/10.4081/jphia.2019.1188
Ugur HG, Erci B. The effect of home care for stroke patients and education of caregivers on the caregiver burden and quality of life. Acta Clin Croat 2019;58:321-32.
Agianto, Nuntaboot K. People who are involved in community health care system for stroke in Indonesia. J Nurs Heal Care 2019;37:63-72.
Prayoga DH, Aridamayanti BG, Trisnawati I, Ronalia MF. Telerehabilitation system in nursing post stroke-a systematic review. J Ners 2019;14:182-7. DOI: https://doi.org/10.20473/jn.v14i3.17017
Byun E, Evans LK. Concept analysis of burden in caregivers of stroke survivors during the early poststroke period. Clin Nurs Res 2015;24:468-86. DOI: https://doi.org/10.1177/1054773814537060
Pérez-Cruz M, Parra-Anguita L, López-Martínez C, et al. Burden and anxiety in family caregivers in the hospital that debut in caregiving. Int J Environ Res Public Health 2019;16:1-14. DOI: https://doi.org/10.3390/ijerph16203977
Venketasubramanian N, Yudiarto FL, Tugasworo D. Stroke burden and stroke services in Indonesia. Cerebrovasc Dis Extra 2022;12:53-7. DOI: https://doi.org/10.1159/000524161
Nemeth LS, Jenkins C, Jauch EC, et al. A community-engaged assessment of barriers and facilitators to rapid stroke treatment. Res Nurs Health 2016;39:438-48. DOI: https://doi.org/10.1002/nur.21749
Norris M, Allotey P, Barrett G. “It burdens me”: the impact of stroke in central Aceh, Indonesia. Sociol Heal Illn 2012;34:826-40. DOI: https://doi.org/10.1111/j.1467-9566.2011.01431.x
Donkor ES. Stroke in the 21st century: a snapshot of the burden, epidemiology, and quality of life. Stroke Res Treat 2018;2018:3238165.
Rajsic S, Gothe H, Borba HH, et al. Economic burden of stroke: a systematic review on post-stroke care. Eur J Heal Econ 2019;20:107-34. DOI: https://doi.org/10.1007/s10198-018-0984-0
Legg C, Penn C. A stroke of misfortune: cultural interpretations of aphasia in South Africa. Aphasiology 2013;27:126-44. DOI: https://doi.org/10.1080/02687038.2012.684338
Chikafu H, Mutero IT, Chimbari MJ. “If I were to suffer a stroke right now, the first place that I should be taken to is the traditional healer”: community beliefs and health-seeking practices for noncommunicable diseases in rural KwaZulu-Natal, South Africa. Qual Rep 2022;27:243-56. DOI: https://doi.org/10.46743/2160-3715/2022.5229
Nweke MC, Eze CK. The place of spiritual and traditional beliefs in stroke rehabilitation in Sub-Saharan Africa: a scoping review. J Complement Altern Med Res 2019;8:1-16. DOI: https://doi.org/10.9734/jocamr/2019/v8i230119
Agianto A, Kamilah A, Agustina R. Stroke traditional therapy in the community in Indonesia. KnE Life Sci 2022;2022:240-53. DOI: https://doi.org/10.18502/kls.v7i2.10319
European Stroke Organisation (ESO). Essentials of stroke care - An overview of evidence-based interventions covering the entire chain of stroke care. 2018. Available from: https://actionplan.eso-stroke.org/the-essentials-of-stroke-care
Wang W, Pucciarelli G, Mei Y, et al. The dyadic self-care experience of stroke survivors and their caregivers: a qualitative descriptive study. Heal Expect 2023;26:2325-39. DOI: https://doi.org/10.1111/hex.13838
Bastawrous M, Gignac MA, Kapral MK, Cameron JI. Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships. Clin Rehabil 2015;29:592-600. DOI: https://doi.org/10.1177/0269215514552035
Chayati N, Mikami A, Setyopranoto I, Effendy C. Unveiling the patient-centered approach: exploring the needs of Javanese stroke patients in home health services. Int J Public Heal Sci 2024;13:820. DOI: https://doi.org/10.11591/ijphs.v13i2.23564
Setiawan KEP, Wahyuningsih WW, Rizaldy DR, Kasimbar DC. Suwuk: construction of the Javanese people’s mindset in medicine. J Javanologi 2023;5:910. DOI: https://doi.org/10.20961/javanologi.v5i1.67938
Triratnawati A. Acculturation in Javanese traditional medicine practice in Yogyakarta. Komunitas 2016;8:39-50. DOI: https://doi.org/10.15294/komunitas.v8i1.4960
Higginbottom G, Venzon E, Rn C. The use of focused ethnography in nursing research. Nurse Res 2013;20:36-43. DOI: https://doi.org/10.7748/nr2013.03.20.4.36.e305
Creswell JW. Research Design Qualitative, Quantitative, and Mixed Methods Approaches. 2014. Available from: https://www.ucg.ac.me/skladiste/blog_609332/objava_105202/fajlovi/Creswell.pdf
Brooker P. A glossary of Literary and Cultural Theory. Routledge; Milton Park, UK; 2016. DOI: https://doi.org/10.4324/9781315666327
Edgar A, Sedgwick P. Cultural Theory: the key concepts. Routledge; Milton Park, UK; 2007. DOI: https://doi.org/10.4324/9780203933947
Ryan GS. An introduction to the origins, history and principles of ethnography. Nurse Res 2017;24:15-21. DOI: https://doi.org/10.7748/nr.2017.e1470
Ugwu CN, Eze Val HU. Qualitative Research. Idosr J Sci Technol 2023;8:20-35.
Alhojailan MI. Thematic analysis: a critical review of its process and evaluation. WEI Int Eur Acad Proc 2012;1:8-21.
Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. SAGE 2013;400.
Waring J, Marshall F, Bishop S, et al. An ethnographic study of knowledge sharing across the boundaries between care processes, services and organisations: the contributions to ‘safe’ hospital discharge. Heal Serv Deliv Res 2014;2:1-160. DOI: https://doi.org/10.3310/hsdr02290
Widjaja KK, Chulavatnatol S, Suansanae T, et al. Knowledge of stroke and medication adherence among patients with recurrent stroke or transient ischemic attack in Indonesia: a multi-center, cross-sectional study. Int J Clin Pharm 2021;43:666-72. DOI: https://doi.org/10.1007/s11096-020-01178-y
Quillatupa N, Covenas CS. A culturally competent approach to discharge planning and transfer of care. Cureus 2023;15:12-4. DOI: https://doi.org/10.7759/cureus.50235
Kusuma PJ, Djuari L, Machin A, Fauzi AA. Knowledge, attitude and practice of primary care physicians in dealing with acute stroke in Indonesia. J Heal Sci Med Res 2021;39:353-64. DOI: https://doi.org/10.31584/jhsmr.2021800
Sanjuan E, Pancorbo O, Santana K, et al. Management of acute stroke. Specific nursing care and treatments in the stroke unit. Neurologia 2023;38:419-26. DOI: https://doi.org/10.1016/j.nrleng.2020.07.026
Mahendradhata Y, Trisnentoro L, Lystiadewi S, et al. The Republic of Indonesia health system review. 2017. Available from: http://apps.who.int/iris/bitstream/handle/10665/254716/9789290225164-eng.pdf;jsessionid=52CB57A62E59CA58949742AD7C5E7793?sequence=1
Denham AMJ, Wynne O, Baker AL, et al. “This is our life now. Our new normal”: a qualitative study of the unmet needs of carers of stroke survivors. PLoS One 2019;14:1-13. DOI: https://doi.org/10.1371/journal.pone.0216682
Garnett A, Ploeg J, Markle-Reid M, Strachan PH. Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study. BMC Health Serv Res 2022;22:1-15. DOI: https://doi.org/10.1186/s12913-022-07804-x
Yoon SY, Kim YW, Park JM, et al. Accessibility for rehabilitation therapy according to socioeconomic status in patients with stroke : a population-based retrospective cohort study. Brain Neurorehabilitation 2023;16:e16. DOI: https://doi.org/10.12786/bn.2023.16.e16
Liao ZY, Kean S, Haycock-Stuart E. Indigenous lands and health access: the influence of a sense of place on disparities in post-stroke recovery in Taiwan. Heal Place 2024;86:103210. DOI: https://doi.org/10.1016/j.healthplace.2024.103210
Kurtulus Tosun Z, Temel M. Burden of caregiving for stroke patients and the role of social support among family members: an assessment through home visits. Int J Caring 2017;10:1696-704.
Widyastuti RH, Rachma N, Hartati E, et al. Home visit dan support group sebagai upaya pengendalian stroke pada lanjut usia. 2022;18:48-58. DOI: https://doi.org/10.20414/transformasi.v18i1.4776
Scrimaglia S, Ricci M, Masini A, et al. The role of family or community nurse in dealing with frail and chronic patients in Italy: a scoping review. Geriatr 2024;9:1-12. DOI: https://doi.org/10.3390/geriatrics9030081
Newbigging K, Ridley J. Epistemic struggles : the role of advocacy in promoting epistemic justice and rights in mental health. Soc Sci Med 2018;219:36-44. DOI: https://doi.org/10.1016/j.socscimed.2018.10.003
Bulsara C, Saunders R, Emery L, Etherton-Beer C. Reflecting on experiences of care: an exploratory qualitative descriptive study of the perspectives of stroke survivors, families and staff. BMJ Open 2021;11:1-8. DOI: https://doi.org/10.1136/bmjopen-2020-047559
Rochmah TN, Rahmawati IT, Dahlui M, et al. Economic burden of stroke disease: a systematic review. Int J Environ Res Public Health 2021;18:7552. DOI: https://doi.org/10.3390/ijerph18147552
Yamanie N, Lamuri A, Felistia Y, et al. Importance of social support for Indonesian stroke patients with depression. F1000Research 2022;11:1484. DOI: https://doi.org/10.12688/f1000research.126504.1
Pang MYC. Burden of caregivers of individuals with stroke. Hong Kong Physiother J 2014;32:1. DOI: https://doi.org/10.1016/j.hkpj.2014.02.001
Gani A, Budiharsana MP. The consolidated report on Indonesia Health Sector Review 2018. 2018. Available from: https://www.unicef.org/indonesia/media/621/file/Health%20Sector%20Review%202019-ENG.pdf%20.pdf
Morales L. What are the benefits of family counseling? 2022. Available from: https://www.medicalnewstoday.com/articles/family-counseling
Visvanathan A, Mead GE, Dennis M, et al. The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study. BMC Med Inform Decis Mak 2020;20:1-11. DOI: https://doi.org/10.1186/s12911-020-01137-7
Vidyanti AN, Muhrodji P, Wicaksono HDA, et al. Roles and problems of stroke caregivers: a qualitative study in Yogyakarta, Indonesia. F1000Research 2022;10:1-24. DOI: https://doi.org/10.12688/f1000research.52135.2

Supporting Agencies

ASEAN-GMS Scholarship from Khon Kaen University and the Universitas Muhammadiyah Kalimantan Timur, Indonesia. No influence support from funders in the research process

How to Cite

Setia Purdani, K., & Rungreangkulkij, S. (2024). The essential care required by stroke survivors and families: an ethnography study. Healthcare in Low-Resource Settings. https://doi.org/10.4081/hls.2024.12605

Similar Articles

You may also start an advanced similarity search for this article.