Caregiver Burden and Family Autonomy in Long-Term Elderly Care: A Correlational Study

##plugins.themes.academic_pro.article.main##

Brillian Yunita Adiratna
Nur Melizza
Nadin Budiarti
Suyesti Yossi
Berlyan Surya
Roby Putra Hermanto

Abstract

The increasing number of elderly people in Indonesia poses a major challenge in the provision of long-term care services. The elderly tend to experience a decline in physical and mental function so that they depend on the family as the main caregiver. However, the role as a caregiver can cause psychological, physical, economic, and social burdens known as caregiver burden.The purpose of this study was to analyze the relationship between caregiver burden and family independence in long-term care of the elderly.This study used a quantitative approach with a cross-sectional design, conducted from September 2024 to May 2025 in Malang City. A total of 59 family members who care for the elderly were selected through accidental sampling technique. The instruments used were the Zarit Burden Interview and the Family Independence Level questionnaire. Data analysis was performed with the Spearman Rank test using SPSS version 25.0.  The majority of respondents came from large families (71%) and were female (90%). Most families showed high independence (KM 4), while caregiver burden was classified as mild to moderate. Statistical analysis showed no significant relationship between caregiver burden and family independence (p = 0.741; r = -0.044). Although some caregivers experienced burden, families were still able to care for the elderly independently. Caregiver burden is not the only factor that influences family independence and quality in providing services and long-term care for the elderly. Emotional support, family togetherness, and cultural values are thought to play a role in maintaining family independence.

##plugins.themes.academic_pro.article.details##

How to Cite
1.
Adiratna BY, Melizza N, Budiarti N, Yossi S, Surya B, Hermanto RP. Caregiver Burden and Family Autonomy in Long-Term Elderly Care: A Correlational Study. jdk [Internet]. 2025 Nov. 30 [cited 2026 Oct. 2];13(3):262-71. Available from: https://jdk.ulm.ac.id/index.php/jdk/article/view/930

References

  1. Amlak BT, Getinet M, Getie A, Kebede WM, Tarekegn TT. Functional disability in basic and instrumental activities of daily living among older adults globally: a systematic review and meta-analysis. 2025.
  2. Azheema E, Alfina N. Nrimo in pandum: description of Javanese self-acceptance after the family died. Int J Res Publ Rev. 2023;4(7):1989–1993.
  3. Brites R, Brandão T, Nunes O, Hipólito J, Tomé C. The impact of caregiving on informal caregivers of people with dementia: family functioning, burden, and burnout. J Clin Psychol Med Settings. 2025;32(2):325–335. doi:10.1007/s10880-024-10052-2.
  4. Cai C, Zhou X, Chen S. Associations between perceived overload and quality of care in dementia family caregivers in China: mediating role of familism and social support. Front Public Health. 2024;12:1512778. doi:10.3389/fpubh.2024.1512778/
  5. Cham CQ, Ibrahim N, Siau CS, Kalaman CR, Ho MC, Yahya AN, et al. Caregiver burden among caregivers of patients with mental illness: a systematic review and meta-analysis. 2022.
  6. Chan CY, De Roza JG, Teck G, Ding Y, Koh HL, Lee ES. Psychosocial factors and caregiver burden among primary family caregivers of frail older adults with multimorbidity. BMC Prim Care. 2023;24:198. doi:10.1186/s12875-023-01985-y.
  7. Chen F, Huang S, Zhong W, Cheng Q, Shuai Y. Instrumental activities of daily living function and cognitive status among Chinese older adults: a serial multiple mediation model. Front Public Health. 2024;12:1378979. doi:10.3389/fpubh.2024.1378979.
  8. Çınaroğlu M. A tale of resilience and faith: understanding grief through Islamic coping mechanisms. 2024;9:169–186.
  9. Fairfax A, Brehaut J, Colman I, Sikora L, Kazakova A, Chakraborty P. Association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability: a systematic review. 2019.
  10. Fingerman KL, Zhou Z, Haley WE, Zarit SH. Young adult caregivers for older family members: setting a new research agenda. Gerontologist. 2025;65(1).
  11. Haryati O, Banon E, Rahmawati I. Kemandirian lansia dalam pemenuhan activity of daily living. 2022; 129–139.
  12. Heri L, Cicih M. Older persons in the era of demographic dividend. J Keperawatan Indones. 2023;17(1). doi:10.14203/jki.v17i1.636.
  13. Jafari-Koulaee A, Mohammadi E, Fox MT, Rasekhi A, Akha O. Predictors of basic and instrumental activities of daily living among older adults with multiple chronic conditions. 2024.
  14. Karmiyati D. The influence of Javanese cultural internalization on the happiness of the elderly. Adv Soc Sci Educ Humanit Res. 2018;231:43–46.
  15. Liu C, Lee C, Chang T, Liao J. Exploring the relationship between caregiver stress load and dementia patient behavior: a case study from Taiwan. 2020.
  16. Liu F, Shen Q, Huang M, Zhou H. Factors associated with caregiver burden among family caregivers of children with cerebral palsy: a systematic review. BMJ Open. 2023;13:e065215. doi:10.1136/bmjopen-2022-065215.
  17. Liu K, Qin Z, Qin Y, Li Y, Liu Q, Gao F, et al. Effects of Reiki therapy on quality of life: a meta-analysis of randomized controlled trials. Syst Rev. 2025;14:281. doi:10.1186/s13643-025-02811-5.
  18. Loo YX, Yan S, Low LL. Caregiver burden: prevalence, measurement scales, predictive factors and impact—an Asian perspective. Singapore Med J. 2022;63(11):593–603. doi:10.11622/smedj.2021033.
  19. Mamom J. Listening to caregivers’ voices: the informal family caregiver burden of caring for chronically ill bedridden elderly patients. 2022.
  20. Marinho S, Batista IB, Guimarães A, Santos-Orlandi AA, Saidel MG, Oliveira FD, et al. Family relations in informal caregivers of older adults. 2022.
  21. Moon S, Oh E, Chung D, Hong GR. Changes in instrumental activities of daily living limitations and associated factors by gender in community-residing older adults: a longitudinal cohort study. PLoS One. 2024;19:e0296796. doi:10.1371/journal.pone.0296796.
  22. Nubli M, Awang W, Hasanah P. Caregiving burden of older people with functional deficits and associated factors among Malaysian family caregivers. 2024;31(1):161–171.
  23. Nurrohmi. Dukungan sosial keluarga terhadap lansia. 2020;2(1):77–88.
  24. Oktarina R, Agustiani S. Life of older adults in institutional care settings in Pangkalpinang. 2024;5:11039–11049.
  25. Ping Y, Lim-Soh J, Østbye T, Azman SDOA, Ting Y, Malhotra R. Trajectories of burden or benefits of caregiving among informal caregivers of older adults: a systematic review. 2025.
  26. Rahayu DYS, Usman RD, Putri DP. Optimizing independence of older adults in daily living activities through empowerment. 2024;6.
  27. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655.
  28. Shrestha S, Arora S, Hunter A, Debesay J. The morality of care: female family caregivers’ motivations for providing care to older migrants. Qual Health Res. 2024;34:1–15. doi:10.1177/10497323241280239.
  29. Syifa FASY, Surjaningrum ER. Narrative review: caregiving burden among sandwich generation women and psychological well-being. Buletin Riset Psikologi Kesehatan Mental. 2021.
  30. Tang B, Li Z, Hu S. Economic implications of health care burden for the elderly population. Policy Polit Nurs Pract. 2022;23(4). doi:10.1177/00469580221121511.
  31. Wang J. Caregiver burden and associated factors among informal caregivers of hospitalized elderly patients in China: a latent profile analysis. 2025.
  32. Zaalberg T, Barten DG, van Heugten CM, Klijnsma P, Knarren L, Hiemstra Y, et al. Prevalence and risk factors of burden among caregivers of older emergency department patients. Sci Rep. 2023;13:31750. doi:10.1038/s41598-023-31750-1.
  33. 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;15:1435867. doi:10.3389/fpsyg.2024.1435867.