Family Caregiver Based Stroke Rehabilitation Assistance: Its Effect on Caregiver Burden and Quality of Life

Authors

  • Miftafu Darussalam Universitas Jenderal Achmad Yani Yogyakarta, Indonesia
  • Untung Sujianto Universitas Diponegoro, Indonesia

Keywords:

Caregiver Burden, Quality of Life, stroke rehabilitation

Abstract

Background: The Special Region of Yogyakarta has the highest prevalence of stroke in Indonesia. Post-stroke rehabilitation remains predominantly institutional and is not based on family caregivers. Family caregivers are key to providing home care for patients with stroke. Currently, no structured family caregiver based stroke rehabilitation assistance model has been identified.

Purpose: This research aimed to develop and evaluate the effectiveness of a family caregiver–based stroke rehabilitation assistance model in reducing caregiver burden and improving caregivers’ quality of life.

Methods: This research employed a non-randomized pretest–posttest control group design involving 34 respondents in the intervention group and 34 respondents in the control group. The intervention program was delivered over four weeks, with each session lasting 60 minutes. The content was provided through a blended learning approach using a web-based platform and direct home visits.

Results: The study demonstrated significant improvements in the intervention group, with increased effect sizes in knowledge, attitudes, self-efficacy, behaviors, family roles, and quality of life, as well as a significant reduction in caregiver burden, compared with the control group.

Conclusion: The stroke rehabilitation assistance model was proven effective in enhancing caregivers’ knowledge, self-efficacy, attitudes, behaviors, family roles, and quality of life while reducing caregiver burden. This model may be integrated into primary health care services to strengthen family caregiver based stroke rehabilitation.

References

BIBLIOGRAPHY

1. Hestevik CH, Molin M, Debesay J, Bergland A, Bye A. Older patients’ and their family caregivers’ perceptions of food, meals and nutritional care in the transition between hospital and home care: A qualitative study. BMC Nutr. 2020;6(1):1–13.

2. Zanini C, Amann J, Brach M, Gemperli A, Rubinelli S. The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury. Spinal Cord. 2021;59(5):493–503.

3. Hekmatpou D, Baghban EM, Dehkordi LM. The effect of patient care education on burden of care and the quality of life of caregivers of stroke patients. J Multidiscip Healthc. 2019;12:211–7.

4. Lee J, Baik S, Becker T, Cheon JH. Themes Describing Social Isolation in Family Caregivers of People Living With Dementia: A Scoping Review. Dementia. 2021;21(2):701–21.

5. Kongkar R, Pinyopasakul W, Pongthavornkamol K, Dajpratham P, Orathai P. The determinants of quality of life in Thai family caregivers of stroke survivors. Siriraj Med J. 2019;71(4):290–3.

6. Bidwell JT, Hostinar CE, Higgins MK, Abshire MA, Cothran F, Butts B, et al. Caregiver subjective and physiological markers of stress and patient heart failure severity in family care dyads. Psychoneuroendocrinology [Internet]. 2021;133:105399. Available from: https://www.sciencedirect.com/science/article/pii/S0306453021002730

7. Gérain P, Zech E. Informal Caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Front Psychol. 2019;10(JULY).

8. Swartz K, Collins LG. Caregiver Care. Am Acad Fam Physicians [Internet]. 2019;699–706. Available from: https://www.aafp.org/afp/2019/0601/afp20190601p699.pdf

9. Risnarita D, Pribadi T, Furqoni PD, Elliya R. Depression, anxiety, stress and burden of care of primary caregivers of patients with stroke. 2023;16(7):625–35.

10. Sennfält S, Ullberg T. Informal caregivers in stroke: Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study. Int J Stroke [Internet]. 2019 Jun 25;15(2):197–205. Available from: https://doi.org/10.1177/1747493019858776

11. Zhao J, Zeng Z, Yu J, Xu J, Chen P, Chen Y, et al. Effect of main family caregiver’s anxiety and depression on mortality of patients with moderate-severe stroke. Sci Rep [Internet]. 2021;11(1):1–9. Available from: https://doi.org/10.1038/s41598-021-81596-8

12. da Silva JK, Boery RNS de O. Effectiveness of a support intervention for family caregivers and stroke survivors*. Rev Lat Am Enfermagem. 2021;29.

13. Liu Z, King M. The influencing factors and coping styles of mental health stress responses of stroke caregivers. Kalemaki K, editor. Work [Internet]. 2021 Jun 24;69(2):499–513. Available from: https://www.medra.org/servlet/aliasResolver?alias=iospress&doi=10.3233/WOR-213495

14. Aryani NLD, Hudiyawati D. The Relationship Between the Level of Family Information Needs and the Quality of Life of Families Caring for Heart Failure Patients at RSUD Dr. Moewardi Surakarta. Universitas Muhammadiyah Surakarta; 2022.

15. Lestari AR, Nurhayati SR. The Relationship Between Quality of Life and Psychological Well-Being in Family Members Who Become Caregivers of Cancer Patients in Bandung City. Acta Psychol. 2020;2(1):72–9.

16. Harrison J, Thetford C, Reeves MJ, Brown C, Joshi M, Watkins C. Returning to Leisure Activity Post-Stroke: Barriers and Facilitators to Engagement. Int J Environ Res Public Health. 2022 Nov 7;19(21):14587.

17. Vadas D, Prest K, Turk A, Tierney S. Understanding the facilitators and barriers of stroke survivors’ adherence to recovery-oriented self-practice: a thematic synthesis. Disability and Rehabilitation. Taylor and Francis Ltd.; 2021.

18. Zarzycki M, Seddon D, Morrison V. Informal Caregiver Motivations, Values, Challenges and Gains: A Photovoice and Interpretative Phenomenological Analysis of Interrelationships. J Health Psychol. 2022;28(6):568–82.

19. Jafari J, Kermansaravi F, Yaghoubinia F. The Effect of Home-Based Rehabilitation on Adherence to Treatment and Quality of Life of Individuals After Stroke. Med - Surg Nurs J. 2020 Sep 26;9(2).

20. Minaei-Moghadam S, Manzari ZS, Vaghee S, Mirhosseini S. Effectiveness of a supportive care program via a smartphone application on the quality of life and care burden among family caregivers of patients with major depressive disorder: a randomized controlled trial. BMC Public Health. 2024;24(1):1–10.

21. Duru Aşiret G, Kütmeç Yılmaz C, Sayın Kasar K. Investigation of the effects of interventions made according to the Progressively Lowered Stress Threshold Model on the care outcomes of Alzheimer patients and their families: a randomized clinical trial. Psychogeriatrics [Internet]. 2021 Sep 7;21(5):738–48. Available from: https://onlinelibrary.wiley.com/doi/10.1111/psyg.12734

22. Sousa L, Sequeira C, Ferré‐Grau C, Costa R, Pimenta S, Silva S, et al. “Living Together With Dementia”—A Psychoeducational Group Programme for Family Caregivers. Perspect Psychiatr Care. 2022;58(4):2037–42.

23. Dalirirad H, Seyedfatemi N, Najafi TF. Effect of an Educational Support Programme on Caregiver Burden Among the Family Members of Patients Undergoing Coronary Artery Bypass Graft Surgery. Sultan Qaboos Univ Med J [Squmj]. 2021;21(2):e266-274.

24. Lee J, Yeom I, Yoo S, Hong S. Educational Intervention for Family Caregivers of Older Adults With Delirium: An Integrative Review. J Clin Nurs. 2023;32(19–20):6987–97.

25. Cao S, Huang H, Bo S, Feng M, Liang Y, Liu Y, et al. What Influences Informal Caregivers’ Risk Perceptions and Responses to Home Care Safety of Older Adults With Disabilities: A Qualitative Study. Front Public Heal. 2022;10.

26. Xu Q, Ma J, Zhang Y, Gan J. Family Resilience and Social Support as Mediators of Caregiver Burden and Capacity in Stroke Caregivers: A Cross-Sectional Study. Front Psychol. 2024;15.

27. Canto DF do, Costa FM da, Lucena A de F, Paskulin LMG. Educational Intervention for Family Caregivers of Older Adults After Stroke: Pragmatic Trial Protocol. Rev Bras Enferm. 2025;78(1).

28. Heo S, Shin M, Lee MO, Kim S, Kim SH, Randolph J, et al. Factors Related to Patients’ Self-Care and Self-Care Confidence in Korean Patients With Heart Failure and Their Caregivers. J Cardiovasc Nurs. 2022;38(2):140–9.

29. Ayaz M, Sarwar H, Yaqoob A, Khan MA. Enhancing Knowledge of Family Caregivers and Quality of Life of Patients With Ischemic Stroke. Pakistan J Neurol Surg. 2022;25(4):558–68.

30. Xu X, Chen H, Xu D, Tan FES, Li X. A Scoping Review of Hospital to Home Transitional Care Programmes for Stroke Survivors. J Clin Nurs. 2024;33(9):3414–28.

31. Sirisha S, Jala S, Putta SD, Vooturi S, Kaul S. Knowledge About Medical Management and Therapies for Stroke Among Caregivers of Stroke Survivors—A Comparative Study. Home Healthc Now. 2025;43(2):102–7.

32. Moradi M, Amiri M, Daneshi S, Heydarian SMT, Saghari S, Raesi R. Investigating the Effectiveness of a Virtual Family-Centered Support Intervention on the Mental Health of Hemodialysis Patients and Their Family Caregivers During the COVID-19 Pandemic. Open Public Health J. 2024;17(1).

33. Rumiati R, Kariasa IM, Waluyo A. The Effectiveness of Post-Stroke Patient Care Education Intervention in Stroke Caregivers: A Literature Review. Ijnp (Indonesian J Nurs Pract. 2021;5(2).

34. Wangler J, Janský M. Prerequisites for Providing Effective Support to Family Caregivers Within the Primary Care Setting – Results of a Study Series in Germany. BMC Fam Pract. 2021;22(1).

35. Nair MS, Augustine A, Nair GG. Impact of Interventions From a Secondary Home-Based Palliative Care Unit on Caregiver Burden in Kerala, India. Cureus. 2025;

36. Attari SM, Mahmoodi Z, Mohammadzadeh M, Nasiri M, Taziani YA, Ozgoli G. Predictors of the Relationship Between the Duration of Cancer and Care Time With the Supportive Care Needs of Patients and the Quality of Life of Their Caregivers: A Path Analysis. Support Care Cancer. 2022;30(11):8935–45.

37. Koh YS, Subramaniam M, Matchar DB, Hong SI, Koh GCH. The associations between caregivers’ psychosocial characteristics and caregivers’ depressive symptoms in stroke settings: a cohort study. BMC Psychol [Internet]. 2022;10(1):1–10. Available from: https://doi.org/10.1186/s40359-022-00828-2

38. Huo M, Kim K. Lasting Impact of Relationships on Caregiving Difficulties, Burden, and Rewards. J Soc Pers Relat. 2022;40(1):288–310.

39. Ramirez M, Duran MC, Pabiniak C, Hansen K, Kelley AM, Ralston JD, et al. Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study. Jmir Aging. 2021;4(1):e24965.

40. Muñeton‐Castaño YF, Hull JH, Graham RJ. Tele‐mental Health Intervention for Caregivers of Children on Home Ventilation: A Randomized Control Trial. Child Care Heal Dev. 2021;48(1):80–7.

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Published

2026-05-18

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