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International Journal of Academic Research in Business and Social Sciences

Open Access Journal

ISSN: 2222-6990

The Domain of Challenges and Coping Mechanisms Amongst Caregivers of Autistic Children

Khairunnisa Zainal, Siti Marziah Zakaria, Nur Saadah Muhammad Aun

http://dx.doi.org/10.6007/IJARBSS/v11-i6/10225

Open access

Autism spectrum disorder present challenges, stress, and burdens to caregivers. In order to ensure the quality of life especially the well-being of caregivers, they need necessary supports. This study uses a qualitative method which is in-depth interviews to explore the domains of caregivers’ burden and challenges as well as their coping mechanisms. This study has been conducted among caregivers registered with NASOM Melaka. A total of 8 respondents participated in this study voluntarily, consisting of 7 women and a man. The data was collected via a series of online interviews. The analysis was conducted based on thematic analysis. Financial, emotional, physical, and social life challenges are the domains contributing to the burden of caregiving. The financial issue is reported to be the most important challenge in caregiving. This is due to the high costs involved in the management of treatment and therapy, as well as the cost of food and daily expenses. Acceptance and spiritual aspects are the positive coping mechanisms for the management and caregiving of autistic children. In conclusion, caregivers also need emotional and practical supports from family members. Government and Non-Governmental Organisations should be more attentive to the need and constraints faced by the caregivers, especially financial constraint.

Aida, N., Adib, N., Ibrahim, M. I., Rahman, A. A., & Bakar, R. S. (2019). Perceived Stress among Caregivers of Children with Autism Spectrum Disorder: A State-Wide Study. International Journal of Environment Research in Public Health, 16 (1468), 1-11. doi:10.3390/ijerph16081468
Aida, N., Adib, N., Ibrahim, M. I., Rahman, A. A., & Bakar, R. S. (2019). Predictors of Caregivers ’ Satisfaction with the Management of Children with Autism Spectrum Disorder : A Study at Multiple Levels of Health Care. International Journal of Environment Research in Public Health, 16 (1684), 1–18. doi:10.3390/ijerph16101684
Azizah, M. D., Jamal, A., & Roslina, K. (2014). Kesejahteraan Hidup Subjektif: Pengaruh Elemen Ekonomi dan Bukan Ekonomi. Prosiding PERKEM ke-9, 719-727.
Bashir, A., Khurshid, S., & Qadri, F. (2014). Awareness and Problems of Parents of Children with Autism Spectrum Disorders. International Journal of Interdisciplinary Research and Innovations, 2(2), 42-48.
Bilgin, H., Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child Adolescence Psychiatry Nursing, 23, 92-99.
Braun, V., & Clarke, V. (2014). Successful Qualitative Research: A Practical Guide for Beginners. London: SAGE
Broady, R. T., Stoyles, G. J., & Morse, C. (2018). Understanding carers’ lived experience of stigma: The voice of families with a child on the autism spectrum. Health and Social Care in the Community, 25(1), 224–233.
CDC (Centers for Disease Control and Prevention). (2010). Prevalence of autism spectrum disorder among children aged 8 years- autism and developmental disabilities monitoring network. Principal Investigators, 63(2), 1- 21.
Chan, K. K. S., & Lam, C. B. (2017). Trait mindfulness attenuates the adverse psychological impact of stigma on parents of children with autism spectrum disorder. Mindfulness, 8, 984–994.
Cramm, J. M., & Nieboer, A. P. (2011). Psychological well-being of caregivers of children with intellectual disabilities: Using parental stress as a mediating factor. Journal of Intellectual Disability, 15, 101–113.
Diener, E. (1984). Subjective well-being. Psychological Bulletin, 95, 542-575.
Diener, E., Diener, M., & Diener, C. (1995). Factors predicting the subjective wellbeing of nations. Journal of Personality & Social Psychology, 69(5), 851.
Dillenburger, K., Keenan, M., Doherty, A., Byrne, T., & Gallagher, S. (2010). Living with children diagnosed with autism spectrum disorder: Parental and professional view. British Journal of Special Education, 37: 13-23.
Ezzat, O., Bayoumi, M., & Samarkandi, O. A. (2017). Quality of Life and Subjective Burden on Family Caregiver of Children with Quality of Life and Subjective Burden on Family Caregiver of Children with Autism. American Journal of Nursing Science, 6(1), 33-39. doi: 10.11648/j.ajns.20170601.15
Goedeke, S., Shepherd, D., Landon, J., & Taylor, S. (2019). How perceived support relates to child autism symptoms and care- related stress in parents caring for a child with autism. Research in Autism Spectrum Disorders, 60: 36–47.
Hastings, R. P. (2002). Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual and Developmental Disability, 27: 149- 160.
Hoefman, R., Payakachat, N., Exel, J. V., Kuhlthau, K., Kovacs, E., Pyne, J., & Tilford, J. M. (2014). Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol. Journal Autism Dev Disord, 44(8): 1933–1945. doi:10.1007/s10803-014-2066-1.
Ilias, K., Hui, J., Liaw, J., Cornish, K., Park, M. S., Golden, K. J., & Ilias, K., (2017). Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual & Developmental Disability, 42(1): 74–89. doi:10.3109/13668250.2016.1196657
Isa, S. N., Aziz, A. A., & Rahman, A. A. (2013). The impact of disabled children on parent health-related quality of life and family functioning in Kelantan and its associated factors. Journal of Developmental and Behavioral Pediatrics, 34, 262– 268.
Karaarslan, Ö., & Kutlu, M. (2015). Autism Spectrum Disorder Social Story in Individuals. Journal of Social Sciences Institute, 19: 1-17.
Kübler-Ross, E. (1969). On death and dying. New York: MacMillan
Landon, J., Shepherd, D., & Goedeke, S. (2018). Predictors of Satisfaction with Life in Parents of Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 48:1640–1650 https://doi.org/10.1007/s10803-017- 3423-7
Li, D., Larsen, L., Yang, Y., Wang, L., Zhai, Y., & Sullivan, W. C. (2019). Exposure to nature for children with autism spectrum disorder: Benefits , caveats, and barriers. Health & Place, 55: 71–79.
Lopez, K., Reed, J., & Magaña, S. (2018). Children and Youth Services Review Associations among family burden, optimism, services received and unmet need within families of children with ASD. Children and Youth Services Review, 98: 105–112.
MaHTAS (Malaysia Health Technology Assessment Section) (2014). Clinical Practice Guidelines. Management of Autism Spectrum Disorder in Children and Adolescents. https://www.moh.gov.my/moh/resources/maklumat%20terkini/CPG_Mx_of_A SD_in_children_and_adolescents_draft.pdf
Misquiatti A. R. N., Brito, M. C., Ferreira, F. T. S., & Junir, F. B. A. (2015). Family Burden and Children with Autism Spectrum Disorders: Perspective of Caregivers. Journal Family and Autism, 17(1):192-200.
Oh, H., Kyoung, E., & Lee, O. (2009). Caregiver Burden and Social Support among Mothers Raising Children with Developmental Disabilities in South Korea. International Journal of Disability, Development and Education, 56 (2), 149-167, DOI:10.1080/10349120902868624
Othman, L. (2014). Penyelidikaan Kualitatif: Pengenalan Kepada Teori dan Metod. Tanjung Malim: UPSI Press.
Parameswari, S., & Eljo, J. O. J. G. (2009). A Study on Psychological Well Being among the Parents of Children with Intellectual and Developmental Disabilities. Journal Of Humanities and Social Science, 8–12
Jabatan Kebajikan Masyarakat. (2019). Perkhidmatan. Retrived from jkm.gov.my
Selye, H. (1976). Stress in health and disease. Reading, MA: Butterworth’s.
Ting, Z., Yiting, W., & Chunli, Y. (2018). Affiliate stigma and depression in caregivers of children with Autism Spectrum Disorders in China: Effects of self-esteem, shame and family functioning. Psychiatry Research, 264, 260–265
Topan, A., Demirel, S., Alkan, I., Ayyildiz, T. K., & Dogru, S. (2019). Parenting an Autistic Child: A Qualitative Study. Int Arch Nurs Health Care, 5 (133): 1-7. doi.org/10.23937/2469-5823/1510133
Ubeh C., Bahari F., & Su Kiong P. V. (2017). Kesejahteraan Subjektif Ibu Bapa Kanak- Kanak Kurang Upayapembelajaran: Pengaruh Komitmen Keagamaan, Harapan Terhadap Anak, dan Sokongan Sosial Jurnal Psikologi Malaysia, 31(2): 45 – 56.
Wang, S. Y., Parrila, R., & Cui, Y. (2013). Meta-analysis of social skills interventions of single-case research for individuals with Autism Spectrum Disorders: Results from three- level HLM. Journal of Autism and Developmental Disorders, 43: 1701- 1716
Werner, S., & Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34 (11): 4103–4114.
Wong, C. C. Y., Mak, W. W. S., & Liao, K. Y. H. (2016). Self-compassion: A potential buffer against affiliate stigma experienced byparents of children with autism spectrum disorders. Mindfulness, 7, 1385–1395
Yamaoka, Y., Tamiya, N., Moriyama, Y., Garrido, S. F. A., Sumazaki, R., & Noguchi, H. (2015). Mental Health of Parents as Caregivers of Childrenwith Disabilities: Based on Japanese Nationwide Survey. PLoS ONE 10 (12): e0145200. doi:10.1371/journal.pone.0145200

In-Text Citation: (Zainal et al., 2021)
To Cite this Article: Zainal, K., Zakaria, S. M., & Aun, N. S. M. (2021). The Domain of Challenges and Coping Mechanisms Amongst Caregivers of Autistic Children. International Journal of Academic Research in Business and Social Sciences, 11(6), 946–957.