Caregiver’s Burden and Life Satisfaction in Caring for Disabled Children in Selangor

Caregiving for children with disabilities (CWDs) can be very challenging for the children's family members, especially their caregivers and may affect their life satisfaction. This study explores the association between caregiver burden and life satisfaction among caregivers of children with disabilities. A descriptive cross-sectional design was utilized, focusing on caregivers from selected rehabilitation centers in Selangor. Data was collected using the validated instruments, ensuring comprehensive and reliable measures of burden and life satisfaction. Majority of respondents were aged 31-35, with a mean age of 35.75 ± 5.31 years. The children averaged 7.50 ± 3.09 years old. Most caregivers experienced a mild burden (53.3%), and 31.9% were slightly dissatisfied with their lives. The Zarit Burden Interview revealed the highest mean score in emotional well-being (11.07 ± 4.88) and the lowest in finances (1.96 ± 0.89). A Pearson correlation coefficient parametric test showed a strong, significant negative correlation between burden and life satisfaction (r= -0.699, p< 0.001), which indicates as the burden increases, life satisfaction decreases. Most caregivers experienced mild burden and slight dissatisfaction with their lives. Therefore, interventions such as policy development, financial support, and nursing assistance are needed to alleviate caregiver burden and enhance their quality of life.

Burden, Caregiver, Life satisfaction, Disabled children

1. Alias, N. A., Ghafar, I. H., & Azizan, A. (2019). The Coping Mechanism and Life Satisfaction Among Caregivers Having Children with Learning Disabilities. Environment Behaviour Proceedings Journal, 4(12). https://doi.org/10.21834/e-bpj.v4i12.1912. [Google Scholar] [Crossref]

2. Bongelli, R., Busilacchi, G., Pacifico, A., Fabiani, M., Guarascio, C., Sofritti, F., Lamura, G., & Santini, S. (2024). Caregiving burden, social support, and psychological well-being among family caregivers of older Italians: a cross-sectional study. Frontiers in public health, 12, 1474967. https://doi.org/10.3389/fpubh.2024.14749 [Google Scholar] [Crossref]

3. Diener, E., Emmons, R.A., Larsen, R.J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 1. [Google Scholar] [Crossref]

4. Fucà, E., Costanzo, F., Ursumando, L., & Vicari, S. (2022). Parenting Stress in Mothers of Children and Adolescents with Down Syndrome. Journal of clinical medicine, 11(5), 1188. https://doi.org/10.3390/jcm11051188 [Google Scholar] [Crossref]

5. Guan, J., Blanchard, A., DiGuiseppi, C. G., Chihuri, S., & Li, G. (2021). Homicide Incidents Involving Children with Autism Spectrum Disorder as Victims Reported in the US News Media, 2000–2019. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05065-x. [Google Scholar] [Crossref]

6. Ghazawy, E. R., Mohammed, E. S., Mahfouz, E. M., & Abdelrehim, M. G. (2020). Determinants of caregiver burden of persons with disabilities in a rural district in Egypt. BMC Public Health, 20(1). https://doi.org/10.1186/s12889-020-09266-4. [Google Scholar] [Crossref]

7. Hassan, A. A., Hamid, A. M., & Eltayeb, N. H. (2021). Burden on Parenting of Children with Special Needs: Review Article. EAS Journal of Nursing and Midwifery, 3(2), 63–75. https://doi.org/10.36349/easjnm.2021.v03i02.002 [Google Scholar] [Crossref]

8. Ismail, A., Abd Razak, R. S., Suddin, L. S., Mahmud, A., Kamaralzaman, S. & Yusri, G. (2022, January 1). The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study. International Journal of Environmental Research and Public Health, 19(1), 475. https://doi.org/10.3390%2Fijerph19010475. [Google Scholar] [Crossref]

9. Khan, S., Batool, I., & Akhtar, N. (2021). Burden Of Caregiving and Life Satisfaction among The Caregivers of Children with Autism Spectrum Disorder. Khyber Medical University Journal, 13(2). https://doi.org/10.35845/kmuj.2021.19861. [Google Scholar] [Crossref]

10. Malaysian Department of Social Welfare. (2023, January 31). Disability Registration Statistics. [Google Scholar] [Crossref]

11. https://www.jkm.gov.my/jkm/uploads/files/STATISTIK%20PENDAFTRAAN%20O KU%2031012023%20(2).pdf. [Google Scholar] [Crossref]

12. Mervenur Öztürk, & Dilek Küçük Alemdar. (2023). The care burden of mothers of children with disability: Association between family quality of life and fatigue. Journal of Pediatric Nursing, 73, e418–e425. https://doi.org/10.1016/j.pedn.2023.10.010. [Google Scholar] [Crossref]

13. Muñoz-Marrón, E., Redolar, D., Boixadós, M., Nieto, R., Guillamón, N., Hernández, E., & Gómez, B. (2013). Burden on Caregivers of Children with Cerebral Palsy: Predictors and Related Factors. Universitas Psychologica, 12(3). https://doi.org/10.11144/javeriana.upsy12-3.bccc. [Google Scholar] [Crossref]

14. [Majumdar, R., & Jain, S. (2020). Comparison of Quality of Life of Caregivers of Children with and without Disabilities. Journal of Clinical and Diagnostic Research, 14(3). https://doi.org/10.7860/jcdr/2020/43442.13602. [Google Scholar] [Crossref]

15. Narayan, A., & T.m, A. K. (2023). Caregiver burden assessment of children with neurodevelopmental disorders in a tertiary care centre. IP International Journal of Medical Paediatrics and Oncology, 9(2), 56–61. https://doi.org/10.18231/j.ijmpo.2023.011. [Google Scholar] [Crossref]

16. Pruthi, G. (2021). A Study of Care Giver’s Burden in Parents of Children with Specific Learning Disability. Journal of Indian Psychology, 9(2). https://ijip.in/wpcontent/uploads/2021/05/18.01.046.20210902.pdf. [Google Scholar] [Crossref]

17. Rutter, T. L., Hastings, R. P., Murray, C. A., Enoch, N., Johnson, S., & Stinton, C. (2024). Psychological wellbeing in parents of children with Down syndrome: A systematic review and meta-analysis. Clinical psychology review, 110, 102426. https://doi.org/10.1016/j.cpr.2024.102426 [Google Scholar] [Crossref]

18. Shanbhag, D., & Arasu, S. (2021). Quality of life and burden of caregiving among the primary caregivers of children with disability in rural Karnataka. Journal of Family Medicine and Primary Care, 10(8), 2804. https://doi.org/10.4103/jfmpc.jfmpc_1911_20. [Google Scholar] [Crossref]

19. Sulaimani, G. S., Kamel, S., Al-Otaibi, G. N., & Telmesani, N. (2023). Quality of Life Among Family Caregivers of Disabled Children in Saudi Arabia. Cureus. https://doi.org/10.7759/cureus.41320. [Google Scholar] [Crossref]

20. Van Niekerk, K., Stancheva, V., & Smith, C. (2023). Caregiver burden among caregivers of children with autism spectrum disorder. The South African Journal of Psychiatry: SAJP: The Journal of the Society of Psychiatrists of South Africa, 29, 2079. https://doi.org/10.4102/sajpsychiatry.v29i0.2079. [Google Scholar] [Crossref]

21. Wahab, R., & Ramli, F. F. A. (2022). Psychological Distress Among Parents of Children with Special Needs. International Journal of Education, Psychology and Counseling, 7(46), 498–511. https://doi.org/10.35631/ijepc.746037. [Google Scholar] [Crossref]

22. Wang, R., Liu, Q., & Zhang, W. (2022). Coping, social support, and family quality of life for caregivers of individuals with autism: Meta-analytic structural equation modeling. Personality and Individual Differences, 186(Part B), Article 111351. https://doi.org/10.1016/j.paid.2021.111351 [Google Scholar] [Crossref]

23. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649. [Google Scholar] [Crossref]

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