Qualitative Research in Behavioral Sciences

Qualitative Research in Behavioral Sciences

Exploring the Lived Experience of Parents of Children with Autism Spectrum Disorder

Document Type : Original Article

Author
Soroush Ranjbar
PhD in Psychology and Education of Exceptional Children, Faculty of Psychology and Education, University of Tehran, Tehran, Iran
10.22077/qrbs.2025.10214.1122
Abstract
Background: Autism spectrum disorder, as one of the most prevalent neurodevelopmental disorders, not only imposes specific challenges, pressures, and difficulties on children but also confronts parents with numerous difficult experiences, consequences, and stressors across various aspects of life. Understanding and exploring parents' lived experience can reveal different dimensions of parents' lives and represent a step toward reducing their difficulties and improving their quality of life.
Aim: The purpose of the present study was to identify and analyze the various dimensions of the lived experience of parents of children with autism spectrum disorder
Method: The present study employed a qualitative approach based on interpretive phenomenology. Participants were selected using purposive sampling and were interviewed in accordance with the study's inclusion criteria. Although theoretical saturation was reached after the eleventh interview, data collection continued through the sixteenth interview to ensure adequate validation. The research instrument consisted of in-depth semi-structured interviews. The data obtained from the interviews were analyzed using Colaizzi's seven-step method with the assistance of MAXQDA software.
Results: In the domain of identifying challenges, pressures, and difficulties, four main themes (emotional and psychological challenges, communicative and social challenges, economic challenges, and caregiving challenges) and 16 sub-themes were extracted. In the domain of proposing solutions aimed at improving parents' lives, five main themes (social and family support, access to therapeutic and educational services, mental health, development of parent–child communication skills, and policymaking and legal support) and 20 sub-themes were identified.
Conclusions: Based on the findings, it can be concluded that parents of children with autism spectrum disorder face emotional, psychological, communicative, social, economic, and caregiving challenges and difficulties. Accordingly, it is recommended that policymakers and relevant authorities design and implement support programs grounded in parents' lived experiences, with the aim of enhancing the quality of life of parents of children with autism spectrum disorder.
Keywords
parents of children with autism spectrum disorder
phenomenology
quality of life
Subjects

References

Ayoubi, L., & Salehi, K. (2025). Achieving Saturation in Qualitative Research: A Systematic Review. Qualitative Research in Behavioral Sciences. https://doi.org/10.22077/qrbs.2025.8429.1069

Chen, X., Tong, J., Zhang, W., Wang, X., Ma, S., Shi, D., Yan, D., & Liu, Y. (2024). Factors predicting depressive symptoms in parents of children with autism spectrum disorder in eastern China. BMC Public Health, 24(1), 212-226. https://doi.org/10.1186/s12889-024-18083-0

Cleary, M., West, S., Johnston-Devin, C., Kornhaber, R., McLean, L., & Hungerford, C. (2024). Collateral damage: The impacts of school exclusion on the mental health of parents caring for autistic children. Issues in Mental Health Nursing, 45(1), 3–8. https://doi.org/10.1080/01612840.2023.2280718

Damiao, J., Damiao, G., Cavaliere, C., Dunscomb, S., Ekelund, K., Lago, R., & Volpe, A. (2024). Parent perspectives on assisted communication and autism spectrum disorder. Occupational Therapy, 78(1), 50-70. https://doi.org/10.5014/ajot.2024.050343

Hsiao, Y. J. (2024). Parental resilience in families of children with autism spectrum disorder. Intervention in School and Clinic, 59(5), 354–357. https://doi.org/10.1177/10534512231190615

Issac, A., Halemani, K., Shetty, A., Thimmappa, L., Vijay, V. R., Koni, K., Mishra, P., & Kapoor, V. (2025). The global prevalence of autism spectrum disorder in children: A systematic review and meta-analysis. Osong Public Health and Research Perspectives, 16(1), 3–12.

https://doi.org/10.24171/j.phrp.2024.0286

Kasem, A., Abuhammad, S., & Jamal, N. (2023). Parents of children with autism spectrum disorder quality of life in Jordan: a comparative study. Future Science, 10(1). https://doi.org/10.2144/fsoa-2023-0096

Lan, K., Jia, X., Gao, S., Feng, Z., Jia, M., Yue, W., Wei, Y. B., & Liu, J. J. (2024). Research trends and hotspots on family caregivers of individuals with autism spectrum disorder from 2002 to 2022 Abibliometric analysis. Child and Adolescent Psychiatric Nursing, 38(1), 56-73. https://doi.org/10.1111/jcap.70008

Liao, X., & Li, Y. (2020). Economic burdens on parents of children with autism: A literature review. CNS Spectrums, 25(4), 468–474. https://doi.org/10.1017/S1092852919001512

Logrieco, M. G., Annechini, E., Casula, L., Guerrera, S., Fasolo, M., Vicari, S., & Valeri, G. (2024). Nonverbal skills evolution in children with autism spectrum disorder one year post-diagnosis. Children, 11(12), 15-20. https://doi.org/10.3390/children11121520

Ni, L. S., Wai Tong, C., & Kam Ki Stanley, L. (2025). Effects of an acceptance and commitment-based parenting program for parents of children with autism spectrum disorder on parenting stress and other parent and children health outcomes: A pilot randomized controlled trial. Autism, 1(2), 1524-1539. https://doi.org/10.1177/13623613241311323

Pardo-Salamanca, A., Rosa-Martínez, E., Gómez, S., Santamarina-Siurana, C., & Berenguer, C. (2025). Parenting stress in autistic and ADHD children: Implications of social support and child characteristics. Autism and Developmental Disorders, 55(1), 2284-2293. https://doi.org/10.1007/s10803-024-06377-4

Ranjan, R., Jain, M., Kumar, P., Sethi, G., & Singh, J. (2023). Exploring the path to pathos "Lived experiences of parents of children with autism spectrum disorder": An interpretative phenomenological analysis. Psychiatry, 65(3), 310-318. https://doi.org/10.4103/indianjpsychiatry.indianjpsychiatry_71_22

Rfat, M., Koçak, O., & Uzun, B. (2023). Parenting challenges in families of children with a diagnosis of autism spectrum disorder: A qualitative research study in Istanbul. Global Social Welfare: Research, Policy & Practice, 23(1), 1–10. https://doi.org/10.1007/s40609-023-00270-1

Samsell, B., Lothman, K., Samsell, E. E., & Ideishi, R. I. (2022). Parents' experiences of caring for a child with autism spectrum disorder in the United States: A systematic review and metasynthesis of qualitative evidence. Fam Syst Health, 40(1), 93-104. https://psycnet.apa.org/doi/10.1037/fsh0000654

Shahbaz, T., Khalid, S., Ali, A., & Yaqoob, S. (2023). Parenting stress among parents of children with autism spectrum disorder. Health and Rehabilitation Research, 3(2), 724–729. https://doi.org/10.61919/jhrr.v3i2.214

Volgyesi-Molnar, M., Gyori, M., Eapen, V., Borsos, Z., Havasi, A., Jakab, Z., Janoch, L., Nemeth, V., Oszi, T., Szekeres, Á., & Stefanik, K. (2025). Quality of life in Hungarian parents of autistic individuals. Autism and Developmental Disorders, 55(1), 1122–1137 .https://doi.org/10.1007/s10803-024-06243-3

Wang, L., Zhang, H., Shang, C., Liang, H., Liu, W., Han, B., Xia, W., Zou, M., & Sun, C. (2022). Mental health issues in parents of children with autism spectrum disorder: A multi-time-point study elated toCOVID -19 pandemic. Autism Research: Society for Autism Research, 15(12), 2346–2358. https://doi.org/10.1002/aur.2836

Waizbard-Bartov, E., Fein, D., Lord, C., & Amaral, D. G. (2023). Autism severity and its relationship to disability. Autism Research, 16(4), 685–696. https://doi.org/10.1002/aur.2898

Wolters, N. E., Mobach, L., Wuthrich, V. M., Vonk, P., Van der Heijde, C. M., Wiers, R. W., Rapee, R. M., & Klein, A. M. (2023). Emotional and social loneliness and their unique links with social isolation, depression and anxiety. Affective Disorders, 329(1), 207–217. https://doi.org/10.1016/j.jad.2023.02.096

Zhang, H., & Chen, C. (2024). A Systematic Review: Factors Related to Culturally and Linguistically Diverse Minority Parents’ Service Decisions for Their Children with Autism Spectrum Disorder. Autism Development Disorder, 1(4), 32-54 .https://doi.org/10.1007/s40489-024-00431-8

Zhang, C., Lin, F., Chen, Y., Wang, R., Zhou, T., & Yi, C. (2024). The association between parenting stress and parenting behaviors in Chinese parents of children with autism spectrum disorders: The mediating role of parental anxiety and depression. Mental Health Research inIntellectual Disabilities, 17(4), 275 –296. https://doi.org/10.1080/19315864.2024.2401833

References
Ayoubi, L., & Salehi, K. (2025). Achieving Saturation in Qualitative Research: A Systematic Review. Qualitative Research in Behavioral Sciences. https://doi.org/10.22077/qrbs.2025.8429.1069
Chen, X., Tong, J., Zhang, W., Wang, X., Ma, S., Shi, D., Yan, D., & Liu, Y. (2024). Factors predicting depressive symptoms in parents of children with autism spectrum disorder in eastern China. BMC Public Health, 24(1), 212-226. https://doi.org/10.1186/s12889-024-18083-0
Cleary, M., West, S., Johnston-Devin, C., Kornhaber, R., McLean, L., & Hungerford, C. (2024). Collateral damage: The impacts of school exclusion on the mental health of parents caring for autistic children. Issues in Mental Health Nursing, 45(1), 3–8. https://doi.org/10.1080/01612840.2023.2280718
Damiao, J., Damiao, G., Cavaliere, C., Dunscomb, S., Ekelund, K., Lago, R., & Volpe, A. (2024). Parent perspectives on assisted communication and autism spectrum disorder. Occupational Therapy, 78(1), 50-70. https://doi.org/10.5014/ajot.2024.050343
Hsiao, Y. J. (2024). Parental resilience in families of children with autism spectrum disorder. Intervention in School and Clinic, 59(5), 354–357. https://doi.org/10.1177/10534512231190615
Issac, A., Halemani, K., Shetty, A., Thimmappa, L., Vijay, V. R., Koni, K., Mishra, P., & Kapoor, V. (2025). The global prevalence of autism spectrum disorder in children: A systematic review and meta-analysis. Osong Public Health and Research Perspectives, 16(1), 3–12.
https://doi.org/10.24171/j.phrp.2024.0286
Kasem, A., Abuhammad, S., & Jamal, N. (2023). Parents of children with autism spectrum disorder quality of life in Jordan: a comparative study. Future Science, 10(1). https://doi.org/10.2144/fsoa-2023-0096
Lan, K., Jia, X., Gao, S., Feng, Z., Jia, M., Yue, W., Wei, Y. B., & Liu, J. J. (2024). Research trends and hotspots on family caregivers of individuals with autism spectrum disorder from 2002 to 2022 Abibliometric analysis. Child and Adolescent Psychiatric Nursing, 38(1), 56-73. https://doi.org/10.1111/jcap.70008
Liao, X., & Li, Y. (2020). Economic burdens on parents of children with autism: A literature review. CNS Spectrums, 25(4), 468–474. https://doi.org/10.1017/S1092852919001512
Logrieco, M. G., Annechini, E., Casula, L., Guerrera, S., Fasolo, M., Vicari, S., & Valeri, G. (2024). Nonverbal skills evolution in children with autism spectrum disorder one year post-diagnosis. Children, 11(12), 15-20. https://doi.org/10.3390/children11121520
Ni, L. S., Wai Tong, C., & Kam Ki Stanley, L. (2025). Effects of an acceptance and commitment-based parenting program for parents of children with autism spectrum disorder on parenting stress and other parent and children health outcomes: A pilot randomized controlled trial. Autism, 1(2), 1524-1539. https://doi.org/10.1177/13623613241311323
Pardo-Salamanca, A., Rosa-Martínez, E., Gómez, S., Santamarina-Siurana, C., & Berenguer, C. (2025). Parenting stress in autistic and ADHD children: Implications of social support and child characteristics. Autism and Developmental Disorders, 55(1), 2284-2293. https://doi.org/10.1007/s10803-024-06377-4
Ranjan, R., Jain, M., Kumar, P., Sethi, G., & Singh, J. (2023). Exploring the path to pathos "Lived experiences of parents of children with autism spectrum disorder": An interpretative phenomenological analysis. Psychiatry, 65(3), 310-318. https://doi.org/10.4103/indianjpsychiatry.indianjpsychiatry_71_22
Rfat, M., Koçak, O., & Uzun, B. (2023). Parenting challenges in families of children with a diagnosis of autism spectrum disorder: A qualitative research study in Istanbul. Global Social Welfare: Research, Policy & Practice, 23(1), 1–10. https://doi.org/10.1007/s40609-023-00270-1
Samsell, B., Lothman, K., Samsell, E. E., & Ideishi, R. I. (2022). Parents' experiences of caring for a child with autism spectrum disorder in the United States: A systematic review and metasynthesis of qualitative evidence. Fam Syst Health, 40(1), 93-104. https://psycnet.apa.org/doi/10.1037/fsh0000654
Shahbaz, T., Khalid, S., Ali, A., & Yaqoob, S. (2023). Parenting stress among parents of children with autism spectrum disorder. Health and Rehabilitation Research, 3(2), 724–729. https://doi.org/10.61919/jhrr.v3i2.214
Volgyesi-Molnar, M., Gyori, M., Eapen, V., Borsos, Z., Havasi, A., Jakab, Z., Janoch, L., Nemeth, V., Oszi, T., Szekeres, Á., & Stefanik, K. (2025). Quality of life in Hungarian parents of autistic individuals. Autism and Developmental Disorders, 55(1), 1122–1137 .https://doi.org/10.1007/s10803-024-06243-3
Wang, L., Zhang, H., Shang, C., Liang, H., Liu, W., Han, B., Xia, W., Zou, M., & Sun, C. (2022). Mental health issues in parents of children with autism spectrum disorder: A multi-time-point study elated toCOVID -19 pandemic. Autism Research: Society for Autism Research, 15(12), 2346–2358. https://doi.org/10.1002/aur.2836
Waizbard-Bartov, E., Fein, D., Lord, C., & Amaral, D. G. (2023). Autism severity and its relationship to disability. Autism Research, 16(4), 685–696. https://doi.org/10.1002/aur.2898
Wolters, N. E., Mobach, L., Wuthrich, V. M., Vonk, P., Van der Heijde, C. M., Wiers, R. W., Rapee, R. M., & Klein, A. M. (2023). Emotional and social loneliness and their unique links with social isolation, depression and anxiety. Affective Disorders, 329(1), 207–217. https://doi.org/10.1016/j.jad.2023.02.096
Zhang, H., & Chen, C. (2024). A Systematic Review: Factors Related to Culturally and Linguistically Diverse Minority Parents’ Service Decisions for Their Children with Autism Spectrum Disorder. Autism Development Disorder, 1(4), 32-54 .https://doi.org/10.1007/s40489-024-00431-8
Zhang, C., Lin, F., Chen, Y., Wang, R., Zhou, T., & Yi, C. (2024). The association between parenting stress and parenting behaviors in Chinese parents of children with autism spectrum disorders: The mediating role of parental anxiety and depression. Mental Health Research inIntellectual Disabilities, 17(4), 275 –296. https://doi.org/10.1080/19315864.2024.2401833

  • Receive Date 06 August 2025
  • Revise Date 27 October 2025
  • Accept Date 09 November 2025