Occupational Balance and Caregiver Burden among Parents of Children with Autism Spectrum Disorder

Mohd Suleiman Murad; Shahidah Abdul Aziz; Syamsul Anwar Sultan Ibrahim; Usep Abdulmatin

doi:10.21834/e-bpj.v10i32.6726

Authors

Mohd Suleiman Murad Universiti Teknologi MARA
Shahidah Abdul Aziz Centre for Occupational Therapy Studies, Faculty of Health Sciences, Universiti Teknologi MARA (UiTM), Puncak Alam Campus, 42300 Bandar Puncak Alam, Selangor, Malaysia
Syamsul Anwar Sultan Ibrahim Centre for Occupational Therapy Studies, Faculty of Health Sciences, Universiti Teknologi MARA (UiTM), Puncak Alam Campus, 42300 Bandar Puncak Alam, Selangor, Malaysia
Usep Abdulmatin Faculty of Adab and Humanities, Universitas Islam Negeri Syarif Hidayatullah, Jakarta, Indonesia

DOI:

https://doi.org/10.21834/e-bpj.v10i32.6726

Keywords:

Autism Spectrum Disorder, Occupational Balance, Caregiver Burden, Family Support

Abstract

This study explores occupational balance (OB) and caregiver burden among parents of children with Autism Spectrum Disorder (ASD) in Malaysia. A cross-sectional survey of 89 parents from National Autism Society of Malaysia (NASOM) centres used the Zarit Burden Interview and Occupational Balance Questionnaire. Results showed significant demographic variations, with Malay parents reporting higher burden scores. However, no significant correlation was found between OB and caregiver burden. Findings emphasize the need for culturally sensitive support systems to alleviate caregiving stress. Future research should explore longitudinal and intervention-based studies to enhance parental well-being through targeted support programs and community initiatives.

References

Azubuike, A. O., Azubuike, P. C., Afape, A. O., Enyam, M. O., Akinreni, T., Imo, U. F., ... & Adai, G. S. (2024). Burden of Care and Experiences with Caregiving to Children Living with Autism Spectrum Disorder in Nigeria.

Centers for Disease Control and Prevention. (2022). What is autism spectrum disorder?. Retrieved from https://www.cdc.gov/ncbddd/autism/facts.html

Chan, S. L., Matsah, N. S. B., Yusuf, A. A. B., Khaidir, A. S. B. M., Hamdan, N. H. B., & Kamizi, Z. N. B. (2022). A review on family caregiving challenges in Malaysia. ProGCouns: Journal of Professionals in Guidance and Counseling, 3(1), 1-9.

Chua, S. Y., Abd Rahman, F. N., & Ratnasingam, S. (2023). Problem behaviours and caregiver burden among children with Autism Spectrum Disorder in Kuching, Sarawak. Frontiers in Psychiatry, 14, 1244164.

CodeBlue. (2022). Khairy Moots National Autism Council as Autism Rates Rise. Retrieved from: https://codeblue.galencentre.org/2022/07/15/khairy-mootsnational-autism-council-asautismratesrise/#:~:text=The%20number%20of%20diagnoses%20for,from%2 0562%20children%20in%202020.

Cook, A. T. (2021). The Quality of life of maternal caregivers rearing a child with autism spectrum disorder in a single-parent, coupled, or extended family household.

Dey, N. E. Y., & Amponsah, B. (2020). Sources of perceived social support on resilience amongst parents raising children with special needs in Ghana. Heliyon, 6(11).

Dhas, B. N. (2021). Occupational Balance among Parents of Typically Developing Children and Parents of Children with Disabilities Living in Qatar (Doctoral dissertation, Nova Southeastern University).

Dhas, B. N., Carrasco, R., Reinoso, G. A., & Backman, C. (2023). Occupational balance among parents of typically developing children and parents of children with disabilities. The American Journal of Occupational Therapy, 77(1), 7701205150.

Domínguez-Vergara, J., Santa-Cruz-Espinoza, H., & Chávez-Ventura, G. (2023). Zarit Caregiver Burden Interview: Psychometric Properties in Family Caregivers of People with Intellectual Disabilities. European Journal of Investigation in Health, Psychology and Education, 13(2), 391-402.

Eng, W. F., Afiq’ah, N., Rashid, M. A., Farzana, Y., Vytialingam, N., Kabir, M. S., ... & Nazmul, M. H. M. (2024). Experiences and Difficulties of Parents in Caring Their Children with Autism Living In Malaysia. Educational Administration: Theory And Practice, 30(4), 2569-2574.

Håkansson, C., Wagman, P., & Hagell, P. (2020). Construct validity of a revised version of the Occupational Balance Questionnaire. Scandinavian Journal of Occupational Therapy, 27(6), 441-449.

Kamaralzaman, S., Toran, H., Mohamed, S., & Abdullah, N. B. (2018). The economic burden of families with autism spectrum disorders (ASD) children in Malaysia. Journal of ICSAR, 2(1), 71-77.

Mousavi, S. F. (2020). Exhaustion from Parenting Responsibilities in the Families living in Tehran: The Role of Fathers and Mothers' Involvement in Parental Functions. Family Counseling and Psychotherapy, 10(1), 271-298.

Musa, M. N. (2022). The Burden of Care in Caregivers of Children with Autism Spectrum Disorder (Asd) Attending Outpatient Clinics at kamati National and Referral Hospital

Patel, A. D., Arya, A., Agarwal, V., Gupta, P. K., & Agarwal, M. (2022). Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder. Asian journal of psychiatry, 70, 103030.

Schoenmakers, F. (2024). Occupational (im) balance in mothers with autism: A qualitative approach.

Solaiman, M. A., Morshed, A. S. M., Morshed, N. M., Mullick, M. S. I., Rahman, M., & Ahmed, S. (2023). Psychological Distress and Perceived Burden Among Bangladeshi Parents of Children with Autism Spectrum Disorder: A Crosssectional Study. Psychological Studies, 68(3), 319-325.

Subramaniam, A., & Mehta, K. K. (2024). Exploring the Lived Experiences of Caregiving for Older Family Members by Young Caregivers in Singapore: Transition, Trials, and Tribulations. International Journal of Environmental Research and Public Health, 21(2), 182.

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.