Lived Experiences of Direct Care Givers of Stroke Patients in Khyber Pakhtunkhwa, Pakistan: A Qualitative Study
Experiences of Direct Care Givers of Stroke Patients
DOI:
https://doi.org/10.54393/pbmj.v8i2.1206Keywords:
Stroke, Experiences, Caregivers, Perceptions, Qualitative Study, Financial Burden, Emotional Strain, Social ImpactAbstract
Each year, approximately 15 million new people are diagnosed with strokes across the globe. Stroke is a profoundly debilitating condition that extends its impact beyond the individual affected, placing a significant burden on the caregivers. Objectives: To explore the lived experiences of direct givers of stroke patients in Khyber Pakhtunkhwa, Pakistan. Methods: In a qualitative study, purposive sampling technique was used in which the caregivers fulfilling the inclusion criteria of the current study were recruited. After ensuring the ethical considerations, total eight in-depth interviews were conducted, and the data saturation was achieved. Interviews were audiotape recorded, transcribed and then thematic analysis approach was followed. Results: The data of eight participants were included in the analysis. Five themes emerged from the data: early disappointment, economic burden, impact on personal life, impact on social life, and coping mechanism. Conclusions: Caregivers often face a multitude of challenges when taking on unexpected responsibilities of care of the loved ones. These difficulties encompass physical demands, psychological strain, social isolation, and financial burdens. Healthcare professionals should consistently educate caregivers on patient care and regularly evaluate their need for counseling and psychological support. Providing caregivers with essential knowledge and addressing their emotional and mental health needs are crucial for ensuring effective and compassionate care for patients.
References
Khan MI, Khan JI, Ahmed SI, Haq U. The Epidemiology of Stroke in a Developing Country (Pakistan). Journal of Neurology and Stroke. 2018; 8(1): 32-41. doi: 10.15406/jnsk.2018.08.00275. DOI: https://doi.org/10.15406/jnsk.2018.08.00275
World Health Organization. The Atlas of Heart Disease & Stroke. Global Burden of Stroke. 2018. [Last Cited: 29th Dec 2024]. Available at: www.who.int/cardiovascular_diseases/en/cvd_atlas_15_burden_stroke.pdf?ua=1.
Institute for Health Metrics and Evaluation. Findings from the Global Burden of Disease Study 2017. 2018. [Last Cited: 29th Dec 2024]. Available at :
www.healthdata.org/sites/default/files/files/policy_report/2019/GBD_2017_Booklet.pdf.
Thayabaranathan T, Kim J, Cadilhac DA, Thrift AG, Donnan GA, Howard G, et al. Global Stroke Statistics 2022. International Journal of Stroke. 2022 Oct; 17(9): 946-56. doi: 10.1177/17474930221123175. DOI: https://doi.org/10.1177/17474930221123175
Sherin A, Ul-Haq Z, Fazid S, Shah BH, Khattak MI, Nabi F. Prevalence of Stroke in Pakistan: Findings from Khyber Pakhtunkhwa Integrated Population Health Survey (KP-IPHS) 2016-17. Pakistan Journal of Medical Sciences. 2020 Nov; 36(7): 1435. doi: 10.12669/pjms.36.7.2824. DOI: https://doi.org/10.12669/pjms.36.7.2824
Bicknell ED, Said CM, Haines KJ, Kuys S. "I Give It Everything for an Hour Then I Sleep for Four." The Experience of Post-Stroke Fatigue During Outpatient Rehabilitation Including the Perspectives of Carers: A Qualitative Study. Frontiers in Neurology. 2022 Jun; 13: 900198. doi: 10.3389/fneur.2022.900198. DOI: https://doi.org/10.3389/fneur.2022.900198
Upami PT, Handayani F, Johan A. Psychological Problems in Caregivers of Stroke Patients: Scoping Review. Indonesian Journal of Global Health Research. 2024 Apr; 6(2): 689-96.
Siddiqui S and Khalid J. Determining the Caregivers' Burden in Caregivers of Patients with Mental Illness. Pakistan Journal of Medical Sciences. 2019 Sep; 35(5): 1329. doi: 10.12669/pjms.35.5.720. DOI: https://doi.org/10.12669/pjms.35.5.720
Sajwani-Merchant Z, Behan D, Swank C, Daniel K. Caregiver Experiences of Social Support Following Stroke. Journal of Stroke and Cerebrovascular Diseases. 2023 Sep; 32(9): 107253. doi: 10.1016/j.jstrokecerebrovasdis.2023.107253. DOI: https://doi.org/10.1016/j.jstrokecerebrovasdis.2023.107253
Moura A, Teixeira F, Amorim M, Henriques A, Nogueira C, Alves E. A Scoping Review on Studies About the Quality of Life of Informal Caregivers of Stroke Survivors. Quality of Life Research. 2022 Apr: 1-20.
Hultman MT, Everson-Rose SA, Tracy MF, Lindquist R, Hadidi NN. Associations Between Characteristics of Stroke Survivors and Caregiver Depressive Symptoms: A Critical Review. Topics in Stroke Rehabilitation. 2019 Oct; 26(7): 528-37. doi: 10.1080/10749357.2019.1641010. DOI: https://doi.org/10.1080/10749357.2019.1641010
Wu X, Liang Y, Zheng B, Wang H, Ning M, Zheng H, et al. Care Stress in Caregivers of Disabled Stroke Patients: A Cross-Sectional Survey. Annals of Palliative Medicine. 2020 Jul; 9(4): 2211-20. doi: 10.21037/apm-20-1369. DOI: https://doi.org/10.21037/apm-20-1369
Bucki B, Spitz E, Baumann M. Emotional and Social Repercussions of Stroke on Patient-Family Caregiver Dyads: Analysis of Diverging Attitudes and Profiles of the Differing Dyads. PLoS One. 2019 Apr; 14(4): e0215425. doi: 10.1371/journal.pone.0215425. DOI: https://doi.org/10.1371/journal.pone.0215425
Shewangizaw S, Fekadu W, Sackley C, Alem A. Life After Stroke: Exploring Social and Psychological Consequences of Stroke Survivors and Their Caregivers. Ethiopian Medical Journal. 2023; 61(4): 4. doi: 10.4314/emj.v61i4.3. DOI: https://doi.org/10.4314/emj.v61i4.3
Farombi TH, Khan HT, Lawal M. Exploring the Experiences of Family Caregivers in the Management of Stroke Among the Older Adults in Nigeria: A Qualitative Study. Journal of Population Ageing. 2024 Dec; 17(4): 679-91. doi: 10.1007/s12062-024-09454-9. DOI: https://doi.org/10.1007/s12062-024-09454-9
Lu Q, Mårtensson J, Zhao Y, Johansson L. Living on the Edge: Family Caregivers' Experiences of Caring for Post-Stroke Family Members in China: A Qualitative Study. International Journal of Nursing Studies. 2019 Jun; 94: 1-8. doi: 10.1016/j.ijnurstu.2019.02.016. DOI: https://doi.org/10.1016/j.ijnurstu.2019.02.016
Tiwari S, Joshi A, Rai N, Satpathy P. Impact of Stroke on Quality of Life of Stroke Survivors and Their Caregivers: A Qualitative Study from India. Journal of Neurosciences in Rural Practice. 2021 Sep; 12(4): 680. doi: 10.1055/s-0041-1735323. DOI: https://doi.org/10.1055/s-0041-1735323
Lopez-Espuela F, Gonzalez-Gil T, Amarilla-Donoso J, Cordovilla-Guardia S, Portilla-Cuenca JC, Casado-Naranjo I. Critical Points in the Experience of Spouse Caregivers of Patients Who Have Suffered a Stroke: A Phenomenological Interpretive Study. PLoS One. 2018 Apr; 13(4): 0195190. doi: 10.1371/journal.pone.0195190. DOI: https://doi.org/10.1371/journal.pone.0195190
Choo PY, Shaik MA, Tan-Ho G, Lee J, Ho AH. Living Losses in Stroke Caregiving: A Qualitative Systematic Review of Systematic Reviews on Psycho-Socio-Emotional Challenges and Coping Mechanisms. International Journal of Stroke. 2023 Mar; 18(3): 268-77. doi: 10.1177/17474930221104908. DOI: https://doi.org/10.1177/17474930221104908
Aviles LZ, Dajao PB, Uy AB, Bulan PM. Lived Experiences of Family Caregivers of Stroke Survivors In Guadalupe, Cebu City. Occupational Therapy in Health Care. 2024 Apr; 38(2): 276-90. doi: 10.1080/07380577.2023.2200048. DOI: https://doi.org/10.1080/07380577.2023.2200048
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2025 Pakistan BioMedical Journal

This work is licensed under a Creative Commons Attribution 4.0 International License.
This is an open-access journal and all the published articles / items are distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. For comments editor@pakistanbmj.com