Managing Mothers' Expectations in Caring for Autistic Children from a Nursing Perspective: A Qualitative Study
DOI:
https://doi.org/10.31674/mjn.2025.v16i03.018Abstract
Background: Autism is a syndrome with a deviation or delays in behaviours, communication, and social interactions. Therefore, a mother needs to have an understanding of caring for a child with autism, and a nurse needs to understand the thoughts, feelings, and behaviors of parents, especially mothers, in caring for their children. This study aimed to explore the management of mothers' expectations in caring for children with autism from a nursing perspective. Methods: This research is a qualitative study; semi-structured, in-depth interviews were conducted with 7 participants who are parents of children with autism. The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were applied to ensure rigor. Thematic analysis was used to carry out this study. Results: This research identified four themes and 11 sub-themes: (1) Awareness of the limitations of a child; (2) Empathy of a child's love language for problem-solving; (3) Understanding the acceptance process; and (4) Realistic expectations for the child. Conclusion: This study provides a detailed list of mothers' expectations for treating children with autism. Mothers have a way to manage their expectations about their child's condition. They also have great hopes for their children's future to succeed in their education and life. Nurses can provide professional nursing care to children with autism, especially in preserving the mother's mental health.
Keywords:
Autism Children, Caring, Mothers’ ExpectationsDownloads
References
Acharya, S., & Sharma, K. (2021). Lived experiences of mothers raising children with autism in Chitwan district, Nepal. Autism Research and Treatment, 1–12. https://doi.org/10.1155/2021/6614490
Al-Oran, H., Khuan, L., Ying, L. P., & Hassouneh, O. (2022). Coping mechanism among parents of children with autism spectrum disorder: A review. Iranian Journal of Child Neurology, 16(1), 9–17. https://doi.org/10.22037/ijcn.v16i2.31518
Broome, K., McCabe, P., Docking, K., Doble, M., & Carrigg, B. (2021). Speech abilities in a heterogeneous group of children with autism. Journal of Speech, Language, and Hearing Research, 64(12), 4599–4613. https://doi.org/10.1044/2021_JSLHR-20-00651
Cañete, R., Picardo, A., Trueba, P., Torres, Y., & Peralta, E. (2024). A new multi-criteria decision-making approach for the design and selection of materials and manufacturing processes of toys for children with autism. Materials Today Communications, 40. https://doi.org/10.1016/j.mtcomm.2024.109709
Centers for Disease Control and Prevention (CDC). (2024). What is autism spectrum disorder? Retrieved from: https://shorturl.at/AAVVk . Accessed on 5th August, 2024.
Cogzell, A. (2018). Hope in parents of a child with autism spectrum disorder [Thesis]. University of Pretoria, South Africa. http://hdl.handle.net/2263/67980
Crowell, J. A., Keluskar, J., & Gorecki, A. (2019). Parenting behavior and the development of children with autism spectrum disorder. Comprehensive Psychiatry, 90, 21–29. https://doi.org/10.1016/j.comppsych.2018.11.007
Davico, C., Marcotulli, D., Cudia, V. F., Arletti, L., Ghiggia, A., Svevi, B., Faraoni, C., Amianto, F., Ricci, F., & Vitiello, B. (2022). Emotional dysregulation and adaptive functioning in preschoolers with autism spectrum disorder or other neurodevelopmental disorders. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.846146
Doaee, M., Ghomeishi, M., & Sotoudeh, H. (2024). Architectural strategies for fostering creativity and enhancing education for children with autism. Ain Shams Engineering Journal, 15(12). https://doi.org/10.1016/j.asej.2024.103055
Flenik, T. M. N., Bara, T. S., & Cordeiro, M. L. (2023). Family functioning and emotional aspects of children with autism spectrum disorder in Southern Brazil. Journal of Autism and Developmental Disorders, 53(6), 2306–2313. https://doi.org/10.1007/s10803-022-05497-z
Frosch, C. A., Schoppe-Sullivan, S. J., & O’Banion, D. D. (2021). Parenting and child development: A relational health perspective. American Journal of Lifestyle Medicine, 15(1), 45–59. https://doi.org/10.1177/1559827619849028
Frye, R. E. (2018). Social skills deficits in autism spectrum disorder: Potential biological origins and progress in developing therapeutic agents. CNS Drugs, 32(8), 713–734. https://doi.org/10.1007/s40263-018-0556-y
Gill, S. L. (2020). Qualitative sampling methods. Journal of Human Lactation, 36(4), 579–581. https://doi.org/10.1177/0890334420949218
Hidayati, D. L., & Aisha, M. N. . (2022). Living with hope: resilience among parent/s of children with autism in palembang therapy center. INKLUSI, 9(1), 81–98. https://doi.org/10.14421/ijds.090105
Johnson, C. R., Barto, L., Worley, S., Rothstein, R., & Alder, M. L. (2023). Telehealth parent training for sleep disturbances in young children with autism spectrum disorder: A randomized controlled trial. Sleep Medicine, 111, 208–219. https://doi.org/10.1016/j.sleep.2023.08.033
Kruger, G. R., Silveira, J. R., & Marques, A. C. (2019). Motor skills of children with autism spectrum disorder. Revista Brasileira de Cineantropometria & Desempenho Humano, 21. https://doi.org/10.1590/1980-0037.2019v21e60515
Kubo, N., Kitagawa, M., Iwamoto, S., & Kishimoto, T. (2021). Effects of an attachment-based parent intervention on mothers of children with autism spectrum disorder: Preliminary findings from a non-randomized controlled trial. Child and Adolescent Psychiatry and Mental Health, 15, 37. https://doi.org/10.1186/s13034-021-00389-z
LaLiberte, T., Piescher, K., Mickelson, N., & Hwa Lee, M. (2024). The overrepresentation of parents with disabilities in child protection. Children and Youth Services Review, 158. https://doi.org/10.1016/j.childyouth.2024.107446
Lazar, S. M., Challman, T. D., & Myers, S. M. (2024). Etiologic evaluation of children with autism spectrum disorder. Pediatric Clinics of North America, 71(2), 179–197. Retrieved from: https://www.pediatric.theclinics.com/article/S0031-3955(23)00178-5/abstract, Accessed on 14th January, 2024.
Lecciso, F., Levante, A., Fabio, R. A., Caprì, T., Leo, M., Carcagnì, P., Distante, C., Mazzeo, P. L., Spagnolo, P., & Petrocchi, S. (2021). Emotional expression in children with asd: A pre-study on a two-group pre-post-test design comparing robot-based and computer-based training. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.678052
Lewis, C. (2018). Qualitative research in nursing and healthcare (Fourth edition). Nursing Standard. UK. https://doi.org/10.7748/ns.32.22.34.s27
Liang, X., Haegele, J. A., Tse, A. C.-Y., Li, M., Zhang, H., Zhao, S., & Li, S. X. (2024). The impact of the physical activity intervention on sleep in children and adolescents with autism spectrum disorder: A systematic review and meta-analysis. Sleep Medicine Reviews, 74. https://doi.org/10.1016/j.smrv.2024.101913
Lindor, E., Sivaratnam, C., May, T., Stefanac, N., Howells, K., & Rinehart, N. (2019). Problem behavior in autism spectrum disorder: Considering core symptom severity and accompanying sleep disturbance. Frontiers in Psychiatry, 10. https://doi.org/10.3389/fpsyt.2019.00487
Maemonah, S., Hamidah, Notobroto, H. B., Sulystiono, D., & Widarti, L. (2021). Factors affecting the ability to speak in children with autism spectrum disorders. Journal of Public Health Research, 10(2). https://doi.org/10.4081/jphr.2021.2236
Miranda, A., Mira, A., Berenguer, C., Rosello, B., & Baixauli, I. (2019). Parenting stress in mothers of children with autism without intellectual disability: Mediation of behavioral problems and coping strategies. Frontiers in Psychology, 10, 1–12. https://doi.org/10.3389/fpsyg.2019.00464
Monteiro, C. E., da Silva, E., Sodré, R., Costa, F., Trindade, A. S., Bunn, P., Costa e Silva, G., di Masi, F., & Dantas, E. (2022). The effect of physical activity on motor skills of children with autism spectrum disorder: A meta-analysis. International Journal of Environmental Research and Public Health, 19(21). https://doi.org/10.3390/ijerph192114081
Moosa-Tayob, S., & Risenga, P. R. (2022). Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships, South Africa. African Journal of Disability, 11. https://doi.org/10.4102/AJOD.V11I0.930
Mujahid, I. (2022). Social skills and behavior autism spectrum disorder during covid-19 Pandemic. Jurnal Konseling Dan Pendidikan, 10(1), 167-175. https://doi.org/10.29210/170000
National Institute of Mental Health (NIH). (2021). Strategic plan for research. Retrieved from: https://www.nimh.nih.gov/sites/default/files/documents/about/strategic-planning-reports/NIMH-Strategic-Plan-for-Research-2021-Update.pdf . Accessed on 15th September, 2024.
Nurmalia, P., Yudianita, K., Haikal, M. R., & Akbar, M. F. (2020). The diagnostic value of neutrophil-lymphocyte ratio in diagnosis of autism spectrum disorders. Indonesian Journal of Clinical Pathology and Medical Laboratory, 26(3), 356–361. https://doi.org/10.24293/ijcpml.v26i3.1597
Opoku, M. P., Anwahi, N., Belbase, S., Shah, H., Alkateri, T., & Moustafa, A. (2023). Accessibility of nutritional services for children with autism spectrum disorder in the United Arab Emirates: Insights from special education teachers and parents. Research in Developmental Disabilities, 138. https://doi.org/10.1016/j.ridd.2023.104521
Praveena, K. R., & Sasikumar, S. (2021). Application of colaizzi’s method of data analysis in phenomenological research. Medico Legal Update, 21(2), 914–918. https://doi.org/10.37506/mlu.v21i2.2800
Renjith, V., Yesodharan, R., Noronha, J., Ladd, E., & George, A. (2021). Qualitative methods in health care research. International Journal of Preventive Medicine, 12(1). Wolters Kluwer Medknow. https://doi.org/10.4103/ijpvm.IJPVM_321_19
Reupert, A., Straussner, S. L., Weimand, B., & Maybery, D. (2022). It takes a village to raise a child: understanding and expanding the concept of the “Village.” Frontiers in Public Health, 10. https://doi.org/10.3389/fpubh.2022.756066
Senouci, M., Hussein Obeidat, & Rabha Gaouti. (2021). Autism spectrum as a communication disorder: A case study. African Educational Research Journal, 9(3), 687–695. https://doi.org/10.30918/AERJ.93.21.104
Silveira-Zaldivar, T., Özerk, G., & Özerk, K. (2020). Developing social skills and social competence in children with autism. International Electronic Journal of Elementary Education, 13(3), 341–363. https://doi.org/10.26822/IEJEE.2021.195
Smith, J., Aulich, A., Bent, C. A., Constantine, C., Franks, K., Goonetilleke, N., Green, C. C., Lee, P., Ma, E., Said, H., Wang, R., Wood, S., & Hudry, K. (2023). “What is early intervention? I had no idea”: Chinese parents’ experiences of early supports for their autistic children in Australia. Research in Autism Spectrum Disorders, 108. https://doi.org/10.1016/j.rasd.2023.102227
Tokatly Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Autism, 25(4), 1047–1059. https://doi.org/10.1177/1362361320984317
Uddin, M. J., & Ashrafun, L. (2023). Parenting in context: parents’ experiences of caring for a child with autism in Bangladesh. International Journal of Anthropology and Ethnology, 7(1). https://doi.org/10.1186/s41257-023-00089-w
Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Gélie, F., Miot, S., Roeyers, H., & Baghdadli, A. (2019). Coping strategies of parents of children with autism spectrum disorder: A systematic review. European Child & Adolescent Psychiatry, 28(6), 747–758. https://doi.org/10.1007/s00787-018-1183-3
Viana, C. R., Caldeira, S., Lourenço, M., & Simões Figueiredo, A. (2021). Parenting of children with autism spectrum disorder: A grounded theory study. Healthcare (Switzerland), 9(7). https://doi.org/10.3390/healthcare9070872
Walensky, R. P., Bunnell, R., Kent, C. K., Gottardy, A. J., Leahy, M. A., Martinroe, J. C., Spriggs, S. R., Yang, T., Doan, Q. M., King, P. H., Starr, T. M., Yang, M., Jones, T. F., Boulton, M. L., Carolyn Brooks, M., Virginia Caine, M. A., Fielding, J. E., David Fleming, M. W., Halperin, W. E., … Johnson, L. (2020). Morbidity and mortality weekly report prevalence and characteristics of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2020. MMWR Surveill Summ, 72(2). https://doi.org/10.15585/mmwr.ss7202a1
Published
How to Cite
Issue
Section
License
Copyright (c) 2025 The Malaysian Journal of Nursing (MJN)

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.