Journals / Anadolu Üniversitesi Eğitim Fakültesi Dergisi / 2026 / Volume: 10 Issue: 1

A qualitative study on the experiences of grandparents in the caregiving process of their grandchildren with autism spectrum disorder

Mahir Uğurlu(BARTIN ÜNİVERSİTESİ)0000-0003-4005-4882
Pages
—
Publication Date
2026-03-17
🏛️Bibliographic metadata and full text access for this article are provided via DergiPark.
DergiPark Record ↗
✨

AI Summary & Key Takeaways

AI Insight
⚡ TL;DR(Too Long; Didn't Read)

Based on these findings, strengthening parent–grandparent collaboration, developing targeted intervention programs for grandparents, and conducting future longitudinal and mixed-method research are recommended.

📌 3 Key Takeaways

🎯
Objective & Hypothesis:Autism Spectrum Disorder (ASD) is a neurodevelopmental condition associated with lifelong support needs and significant challenges in social communication, interaction, and behavior, thereby affecting not only individuals but also family systems.
📊
Key Findings & Data:The participants were 14 grandparents selected through purposive sampling based on voluntary participation and on having provided care to a grandchild with ASD for at least 3 years.
💡
Conclusion & Impact:Based on these findings, strengthening parent–grandparent collaboration, developing targeted intervention programs for grandparents, and conducting future longitudinal and mixed-method research are recommended.
🔬Design:Research Article
📍Scope:Comprehensive Sample
⚙️Variables:Autism Spectrum Disorder · Grandparents · Grandchildren

Abstract

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition associated with lifelong support needs and significant challenges in social communication, interaction, and behavior, thereby affecting not only individuals but also family systems. Caring for children with ASD requires multidimensional adaptation and reorganization that often extends beyond parents to include the extended family, with grandparents frequently assuming critical roles. Despite their importance, grandparents’ experiences in the caregiving process remain underexplored, as most studies focus primarily on parent-centered caregiver burden and family stress. Existing evidence indicates that grandparents face multifaceted challenges, including age-related physical limitations, limited knowledge about ASD, difficulties in managing crises, and exposure to social stigma. At the same time, strong emotional bonds with their grandchildren and contributions to family cohesion can transform caregiving from a source of burden into a meaningful life experience, highlighting the need to examine these experiences in depth to inform family-based interventions and support policies that address the extended family. Accordingly, this study aimed to explore the experiences of grandparents caring for grandchildren with ASD using a qualitative phenomenological design. The participants were 14 grandparents selected through purposive sampling based on voluntary participation and on having provided care to a grandchild with ASD for at least 3 years. Data were collected through semi-structured interviews and analyzed using content analysis. The findings showed that while some grandparents perceived caregiving as meaningful and valuable, others experienced it as physically and emotionally demanding or viewed it as a natural family responsibility. Grandparents assumed active roles in daily care, social and educational support, and assistance to parents, encountering various challenges and expressing needs for informational, psychological, and social support. Caregiving exerted both positive and negative effects on family relationships. Based on these findings, strengthening parent–grandparent collaboration, developing targeted intervention programs for grandparents, and conducting future longitudinal and mixed-method research are recommended.

🔖

Cite This Article

Uğurlu, M. (2026). A qualitative study on the experiences of grandparents in the caregiving process of their grandchildren with autism spectrum disorder. Anadolu Üniversitesi Eğitim Fakültesi Dergisi, Volume: 10 Issue: 1. https://doi.org/10.34056/aujef.1848682

📄 Full Text PDF Viewer

📄

PDF görüntüleyici hazırlanıyor...

References (54)

  1. Afifi, T. D., Mazur, A., Otmar, C., Wagner, A. C., Papernow, P. L., Methikalam, B., & Peightal, B. M. (2022). Coparenting: A focus on divorced families, stepfamilies, intergenerational families, and families with a child on the autism spectrum. In S. Browning & B. van Eeden-Moorefield (Eds.), Treating contemporary families: Toward a more inclusive clinical practice (pp. 127–156). American Psychological Association. https://doi.org/10.1037/0000280-006
  2. Alnazly, E. K., & Abojedi, A. (2019). Psychological distress and perceived burden in caregivers of persons with autism spectrum disorder. Perspectives in Psychiatric Care, 55(3), 501-508. https://doi.org/10.1111/ppc.12356
  3. American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. American Psychiatric Association.
  4. Baena, S., Jiménez, L., Bejarano, S., & Hidalgo, V. (2024). Perceived impact, needs, and resources of grandparents of children and adolescents on the autism spectrum: A qualitative study. Journal of Autism and Developmental Disorders, 1–18. https://doi.org/10.1007/s10803-024-06537-6
  5. Büyüköztürk, Ş., Kılıç Çakmak, E., Akgün, Ö. E., Karadeniz, Ş. & Demirel, F. (2009). Scientific research methods. Pegem Academy.
  6. Cheroni, C., Caporale, N., & Testa, G. (2020). Autism spectrum disorder at the crossroad between genes and environment: contributions, convergences, and interactions in ASD developmental pathophysiology. Molecular Autism, 11(1), 69. https://doi.org/10.1186/s13229-020-00370-1
  7. Cox, M. J., & Paley, B. (1997). Families as systems. Annual review of psychology, 48, 243–267. https://doi.org/10.1146/annurev.psych.48.1.243
  8. Creswell, J. W. & Creswell, J. D. (2023). Research design: Qualitative, quantitative and mixed methods approaches. Sage Publications Ltd.
  9. Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2013). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213–222. https://doi.org/10.1177/1362361312472261
  10. Cruz Puerto, M., & Sandín Vázquez, M. (2024). Understanding heterogeneity within autism spectrum disorder: A scoping review. Advances in Autism, 10(4), 314–322. https://doi.org/10.1108/AIA-12-2023-0072
  11. Dückert, S., Gewohn, P., König, H., Schöttle, D., Konnopka, A., Rahlff, P., Vogeley, K., Schulz, H., David, N., & Peth, J. (2023). Multidimensional burden on family caregivers of adults with autism spectrum disorder: A scoping review. Review Journal of Autism and Developmental Disorders, 1-18. https://doi.org/10.1007/s40489-023-00414-1
  12. Ekiz, D. (2003). Introduction to research methods and methodologies in education: Qualitative, quantitative, and critical theory methodologies. Anı.
  13. Elsabbagh, M., & Johnson, M. H. (2016). Autism and the social brain: The first-year puzzle. Biological Psychiatry, 80(2), 94-99. https://doi.org/10.1016/j.biopsych.2016.02.019
  14. Emily, G., & Grace, I. (2015). Family quality of life and ASD: The role of child adaptive functioning and behavior problems. Autism Research, 8(2), 199-213. https://doi.org/10.1002/aur.1442
  15. Factor, R. S., Ollendick, T. H., Cooper, L. D., Dunsmore, J. C., Rea, H. M., & Scarpa, A. (2019). All in the family: A systematic review of the effect of caregiver-administered autism spectrum disorder interventions on family functioning and relationships. Clinical Child and Family Psychology Review, 22(4), 433-457. https://doi.org/10.1007/s10567-019-00297-x
  16. Gabovitch, E. M., & Curtin, C. (2009). Family-centered care for children with autism spectrum disorders: A review. Marriage & Family Review, 45(5), 469–498. https://doi.org/10.1080/01494920903050755
  17. George, L. K., & Gwyther, L. P. (1986). Caregiver well-being: a multidimensional examination of family caregivers of demented adults. The Gerontologist, 26(3), 253–259. https://doi.org/10.1093/geront/26.3.253
  18. Gerard J. M., Landry-Meyer L., Roe J. G. (2006). Grandparents raising grandchildren: The role of social support in coping with caregiving challenges. The International Journal of Aging and Human Development, 62(4), 359-383. https://doi.org/10.2190/3796-DMB2-546Q-Y4AQ
  19. Grünwald, O., Damman, M., & Henkens, K. (2024). The experiences of grandparents looking after their grandchildren: Examining feelings of burden and obligation among non-custodial grandparents. Ageing & Society, 44(8), 1791-1808. https://doi.org/10.1017/S0144686X22001027
  20. Gülsoy, A. (2018). Aile Büyüklerinin Otizm Spektrum Bozukluğu Olan Torunlarıyla Yaşantılarına ilişkin Görüşleri (Order No. 28633897). Available from ProQuest Dissertations & Theses Global. (2561961499). https://www.proquest.com/dissertations-theses/aile-büyüklerinin-otizm-spektrum-bozukluğu olan/docview/2561961499/se-2
  21. Hackett, P. M., Schwarzenbach, J. B., & Jürgens, U. M. (2016). Consumer psychology: A study guide to qualitative research methods. Verlag Barbara Budrich.
  22. Hillman, J. L., Wentzel, M. C., & Anderson, C. M. (2017). Grandparents' experience of autism spectrum disorder: Identifying primary themes and needs. Journal of Autism and Developmental Disorders, 47(10), 2957–2968. https://doi.org/10.1007/s10803-017-3211-4
  23. Hodges, H., Fealko, C., & Soares, N. (2020). Autism spectrum disorder: Definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics, 9(1), S55–S65. https://doi.org/10.21037/tp.2019.09.09
  24. Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247-277. https://doi.org/10.1007/s10567-012-0119-6
  25. Koegel, L. K., Koegel, R. L., Ashbaugh, K., & Bradshaw, J. (2014). The importance of early identification and intervention for children with or at risk for autism spectrum disorders. International Journal of Speech-Language Pathology, 16(1), 50-56. https://doi.org/10.3109/17549507.2013.861511
  26. Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J., & Clemons, T. E. (2010). Health-related quality of life in children with autism spectrum disorders: Results from the autism treatment network. Journal of Autism and Developmental Disorders, 40(6), 721-729. https://doi.org/10.1007/s10803-009-0921-2
  27. Lee, E., Clarkson-Hendrix, M., & Lee, Y. (2016). Parenting stress of grandparents and other kin as informal kinship caregivers: A mixed methods study. Children and Youth Services Review, 69, 29-38. https://doi.org/10.1016/j.childyouth.2016.07.013
  28. Li, C., & He, W. Q. (2024). Prevalence and treatment of autism spectrum disorder in the United States, 2016–2022. Autism Research, 17(9), 1916-1927. https://doi.org/10.1002/aur.3228
  29. Li, J. L., Washington-Nortey, M., Kifle, T. H., Cotier, F., & Hoekstra, R. A. (2025). The role of extended family members in the lives of autistic individuals and their parents: a systematic review and meta-synthesis. Clinical Child and Family Psychology Review, 1-33. https://doi.org/10.1007/s10567-025-00525-7
  30. Margetts, J. K., Le Couteur, A., & Croom, S. (2006). Families in a state of flux: the experience of grandparents in autism spectrum disorder. Child: Care, Health and Development, 32(5), 565–574. https://doi.org/10.1111/j.1365-2214.2006.00671.x
  31. Masi, A., DeMayo, M. M., Glozier, N., & Guastella, A. J. (2017). An overview of autism spectrum disorder, heterogeneity and treatment options. Neuroscience Bulletin, 33(2), 183-193. https://doi.org/10.1007/s12264-017-0100-y
  32. Miles, M, B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. Sage.
  33. Mitchell, W. (2007). Research review: The role of grandparents in intergenerational support for families with disabled children: A review of the literature. Child & Family Social Work, 12(1), 94-101. https://doi.org/10.1111/j.1365-2206.2006.00421.x
  34. Moustakas, C. E. (1994). Phenomenological research methods. Sage Publications.
  35. 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. https://doi.org/10.1016/j.ajp.2022.103030
  36. Prendeville, P., & Kinsella, W. (2019). The role of grandparents in supporting families of children with autism spectrum disorders: A family systems approach. Journal of Autism and Developmental Disorders, 49(2), 738-749. https://doi.org/10.1007/s10803-018-3753-0
  37. Rice, C. E., Rosanoff, M., Dawson, G., Durkin, M. S., Croen, L. A., Singer, A., & Yeargin-Allsopp, M. (2012). Evaluating changes in the prevalence of the autism spectrum disorders (ASDs). Public Health Reviews, 34(2), 17. https://doi.org/10.1007/BF03391685
  38. Schreibman, L., Dawson, G., Stahmer, A. C., Landa, R., Rogers, S. J., McGee, G. G., Kasari, C., Ingersoll, B., Kaiser, A. P., Bruinsma, Y., McNerney, E., Wetherby, A., & Halladay, A. (2015). Naturalistic developmental behavioral interventions: Empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(8), 2411-2428. https://doi.org/10.1007/s10803-015-2407-8
  39. Settles, B. H., Zhao, J., Mancini, K. D., Rich, A., Pierre, S., & Oduor, A. (2009). Grandparents caring for their grandchildren: Emerging roles and exchanges in global perspectives. Journal of Comparative Family Studies, 40(5), 827-848. https://doi.org/10.3138/jcfs.40.5.827
  40. Shaw, K. A., Williams, S., Patrick, M. E., Valencia-Prado, M., Durkin, M. S., Howerton, E. M., Ladd-Acosta, C. M., Pas, E. T., Bakian, A. V., Bartholomew, P., Nieves-Muñoz, N., Sidwell, K., Alford, A., Bilder, D. A., DiRienzo, M., Fitzgerald, R. T., Furnier, S. M., Hudson, A. E., Pokoski, O. M., Shea, L., … Maenner, M. J. (2025). Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years - Autism and Developmental Disabilities Monitoring Network, 16 Sites, United States, 2022. Morbidity and mortality weekly report. Surveillance summaries, 74(2), 1–22. https://doi.org/10.15585/mmwr.ss7402a1
  41. Sikora, D., Moran, E., Orlich, F., Hall, T. A., Kovacs, E. A., Delahaye, J., Clemons, T. E., & Kuhlthau, K. (2013). The relationship between family functioning and behavior problems in children with autism spectrum disorders. Research in Autism Spectrum Disorders, 7(2), 307-315. https://doi.org/10.1016/j.rasd.2012.09.006
  42. Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2014). The family context of autism spectrum disorders: influence on the behavioral phenotype and quality of life. Child and Adolescent Psychiatric Clinics of North America, 23(1), 143–155. https://doi.org/10.1016/j.chc.2013.08.006
  43. Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86-97. https://doi.org/10.1016/j.rasd.2008.04.006
  44. Sullivan, A., Winograd, G., Verkuilen, J., & Fish, M. C. (2012). Children on the autism spectrum: Grandmother involvement and family functioning. Journal of Applied Research in Intellectual Disabilities, 25(5), 484–494. https://doi.org/10.1111/j.1468-3148.2012.00695.x
  45. Tordjman, S., Somogyi, E., Coulon, N., Kermarrec, S., Cohen, D., Bronsard, G., Bonnot, O., Weismann-Arcache, C., Botbol, M., Lauth, B., Ginchat, V., Roubertoux, P., Barburoth, M., Kovess, V., Geoffray, M.-M., & Xavier, J. (2014). Gene × environment interactions in autism spectrum disorders: Role of epigenetic mechanisms. Frontiers in Psychiatry, 5, 53. https://doi.org/10.3389/fpsyt.2014.00053
  46. van Manen, M. (1990) Researching lived experience: Human science for an action sensitive pedagogy. State University of New York Press.
  47. van Niekerk, K., Stancheva, V., & Smith, C. (2023). Caregiver burden among caregivers of children with autism spectrum disorder. The South African Journal of Psychiatry, 29, 2079. https://doi.org/10.4102/sajpsychiatry.v29i0.2079
  48. Yıldırım, A. & Şimşek, H. (2019). Qualitative research methods in the social science. Seçkin Publishing.
  49. Yıldız, A., & Gümüşkaya, Ö. (2023). Aile büyüklerinin otizm spektrum bozukluğu olan torunlarıyla yaşantılarına ilişkin görüşleri [The opinions of grandparents about their experiences with their grandchildren with autism spectrum disorder]. Kalem International Journal Of Education And Human Sciences, 13(2), 473-503. https://doi.org/10.23863/kalem.2022.242
  50. Zakirova-Engstrand, R., Roll-Pettersson, L., Westling Allodi, M., & Hirvikoski, T. (2020). Needs of grandparents of preschool-aged children with ASD in Sweden. Journal of Autism and Developmental Disorders, 50(6), 1941–1957. https://doi.org/10.1007/s10803-019-03946-w
  51. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649
  52. Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., Yusuf, A., Shih, A., & Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5), 778–790. https://doi.org/10.1002/aur.2696
  53. Zwaigenbaum, L., Bauman, M. L., Stone, W. L., Yirmiya, N., Estes, A., Hansen, R. L.,. & Wetherby, A. (2015). Early identification of autism spectrum disorder: recommendations for practice and research. Pediatrics, 136, S10-S40. https://doi.org/10.1542/peds.2014-3667C
  54. Zwaigenbaum, L., Bauman, M. L., Stone, W. L., Yirmiya, N., Estes, A., Hansen, R. L.,. & Wetherby, A. (2015). Early identification of autism spectrum disorder: recommendations for practice and research. Pediatrics, 136, S10-S40. https://doi.org/10.1542/peds.2014-3667C