Mother’s Experience in Caring for Children with Special Needs: A Literature Review

Rahmatuz Zulfia


Children with special needs experience long-term limitations on physical, mental, social, and emotional aspects which also have an impact on family well-being, both physical and mental. The impact of parenting on children with special needs is especially felt by mothers, as main caregivers and sources of child support. Anticipation of the acceptance and support system for mothers is needed so that the potential and quality of life children with special needs can be achieved optimally The purpose of this literature review is to know the mothers experience in carrying out their caregiving role in caring for children with special needs. This literature study was conducted by collecting articles from online database that published between 2015 - 2019. The analysis showed that the experience of mothers caring for children with special needs was experienced before the diagnosis, during the diagnosis, and after the diagnosis. The most experienced mother's is the experience after diagnosis, they are feelings within oneself, physical and mental health, high care burden, social isolation, maternal care, maternal needs in carrying out the caregiving role, obstacles in carrying out the caregiving role, and positive aspects from caring for children with special needs. Nurses as health professionals who provide comprehensive interventions are expected to provide attention and assistance to mother, since before until the diagnosis is established, so that the mothers and children well-being can be achieved optimally.


mother, caring experience, children with special needs, disability children

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ADA. (2019). What is the definition of disability under the ADA? Retrieved from The Americans with Disabilities Act website:

Ang, K. Q. P., & Loh, P. R. (2019). Mental health and coping in parents of children with autism spectrum disorder (ASD) in Singapore: an examination of gender role in caring. Journal of Autism and Developmental Disorders, 49(5), 2129–2145.

Bowden, V. R., & Greenberg, C. S. (2010). Children and their families: The continuum of care. Philadelphia: Wolters Kluwer.

Brekke, I., Früh, E. A., Kvarme, L. G., & Holmstrøm, H. (2017). Long-time sickness absence among parents of pre-school children with cerebral palsy, spina bifida and down syndrome: A longitudinal study. BMC Pediatrics, 17(1), 1–8.

Choi, H., & Van Riper, M. (2016). Maternal perceptions to open-ended questions about life with down syndrome in Korea. Qualitative Report, 21(2), 288–298.

Collins, A., Hennessy-Anderson, N., Hosking, S., Hynson, J., Remedios, C., & Thomas, K. (2016). Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Palliative Medicine, 30(10), 950–959.

Collins, T., & Coughlan, B. (2016). Experiences of mothers in Romania after hearing from medical professionals that their child has a disability. Journal of Policy and Practice in Intellectual Disabilities, 13(1), 4–14.

Crettenden, A., Lam, J., & Denson, L. (2018). Grandparent support of mothers caring for a child with a disability: Impacts for maternal mental health. Research in Developmental Disabilities, 76(February 2017), 35–45.

Dambi, J. M., Jelsma, J., & Mlambo, T. (2015). Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers. African Journal of Disability, 4(1), 1–11.

Gadre, V., & Mardhekar, D. V. (2015). Does having a normal child benefit mothers psychologically over those mothers with only special child? Journal of Psychosocial Research, 10(2), 393.

Heer, K., Larkin, M., & Rose, J. (2015). The experiences of British South Asian carers caring for a child with developmental disabilities in the UK. Tizard Learning Disability Review, 20(4), 228–238.

Heer, K., Rose, J., Larkin, M., & Singhal, N. (2015). The experiences of mothers caring for a child with developmental disabilities: a cross cultural perspective. International Journal of Human Rights in Healthcare, 8(4), 218–232.

Kementrian Kesehatan Republik Indonesia. (2018). Laporan Nasional Riset Kesehatan Dasar 2018. Jakarta.

Kyeremateng, J. D. A., Edusei, A., Dogbe, J. A., Opoku, M. P., Nketsia, W., Hammond, C., & Afriyie, S. A. (2019). Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana. African Journal of Disability, 8, 1–12.

Masulani-Mwale, C., Mathanga, D., Silungwe, D., Kauye, F., & Gladstone, M. (2016). Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping? Child: Care, Health and Development, 42(6), 871–880.

Mokhtari, M., & Abootorabi, F. (2019). Lived experiences of mothers of children with cerebral palsy in Iran: A phenomenological study. Child and Youth Services, 0(0), 1–21.

National survey of children with special health care needs. (2016). Retrieved from Data Resource Center for Child and Adolescent Health website:

Nazzal, M. S., & AL-Rawajfah, O. M. (2018). Lived experiences of Jordanian mothers caring for a child with disability. Disability and Rehabilitation, 40(23), 2723–2733.

Su, H., Cuskelly, M., Gilmore, L., & Sullivan, K. (2018). Perceptions of support in Chinese mothers of a child with intellectual disability. Journal of Developmental and Physical Disabilities, 30(4), 509–525.

Sukmak, V., & Sangsuk, N. (2018). Living a tormented life: Caregivers’ experiences of caring for a child with autism in Northeastern Thailand. Archives of Psychiatric Nursing, 32(5), 745–750.

Taderera, C., & Hall, H. (2017). Challenges faced by parents of children with learning disabilities in Opuwo, Namibia. African Journal of Disability, 6(0), 1–11.

Vukkadala, N., Giridhar, S. B. P., Okumura, M. J., & Chan, D. K. (2019). Seeking equilibrium: The experiences of parents of infants and toddlers who are deaf/hard-of-hearing. Journal of Pediatric Rehabilitation Medicine, 12(1), 11–20.

Winarsih, S., Jamal, H., Asiah, A., Idris, F. H., & Adnan, E. (2013). Panduan penanganan anak berkebutuhan khusus bagi pendamping (orang tua, keluarga, dan masyarakat). Retrieved from

Yi, H., Siu, Q. K. Y., Ngan, O. M. Y., & Chan, D. F. Y. (2019). Parents’ experiences of screening, diagnosis, and intervention for children with autism spectrum disorder. American Journal of Orthopsychiatry.

Zechella, A. N., & Raval, V. V. (2016). Parenting Children with Intellectual and Developmental Disabilities in Asian Indian Families in the United States. Journal of Child and Family Studies, 25(4), 1295–1309.

Zuurmond, M., Nyapera, V., Mwenda, V., Kisia, J., Rono, H., & Palmer, J. (2016). Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting. African Journal of Disability, 5(1), 1–9.



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