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Family Preparedness for Future Educational and Life Transformations in Caring for Children with Down Syndrome from the Perspectives of Saudi Mothers: A Qualitative Study

Article Number: e2026087  |  Available Online: June 2026  |  DOI: 10.22521/edupij.2026.24.87

Waleed Alabri

Abstract

Background/purpose. The presence of a child with Down syndrome poses increasing challenges for families, where psychological and social burdens intersect with daily caregiving demands, imposing added pressures on mothers. Although global interest in studying these issues has grown, local research in Saudi Arabia remains limited, particularly regarding family readiness for future educational and life changes. This study therefore explores how Saudi mothers perceive preparedness for future educational and life transitions, within local social and cultural contexts, providing scientific insights to inform family-oriented support programs and enhance overall well-being.

Materials/methods. A qualitative design was employed, based on semi-structured interviews with fifteen Saudi mothers of children with Down syndrome. Data were collected using open-ended questions exploring family preparedness for future educational and life transformations, and were analysed through thematic analysis to identify core patterns and meanings.

Results. Findings revealed that mothers’ perceptions of preparedness for future educational and life transformations consolidated into a single overarching theme, from which two sub-themes emerged: the need for supportive community awareness and the call for sustainable family initiatives.

Conclusion. The study highlights that strengthening community awareness and developing sustainable family initiatives are essential to supporting mothers' well-being and thereby improving future educational and life care for children with Down syndrome.

Keywords: Down syndrome, Saudi mothers, family preparedness, educational and life transitions, qualitative research

References

AbuAlhommos, A. K., Al Hawaj, M. A., Alanazi, A. A., Alrashidi, H. H., Aldawsari, M. F., & Alajmi, R. A. (2025). Quality of Life for Patients with Down Syndrome and Their Caregivers: A Cross-Sectional Study from a Parental Perspective in Saudi Arabia. Healthcare, 13(13), 1614. https://doi.org/10.3390/healthcare13131614

Alabri, W. (2017). The inclusion of children with Down’s Syndrome in mainstream primary schools in Saudi Arabia: Understanding the perspective of school principals, [Unpublished doctoral dissertation]. University of Lincoln.

Alabri, W. (2023). Maternal perspectives: The needs of Saudi families of children with Down’s Syndrome. Journal of Intellectual Disabilities, 27(1), 221–237. https://doi.org/10.1177/17446295211044406

Alenazi, S. A., Hanif, I., Alanazi, R. M. K., Alanazi, N. H. K., Alenezi, K. F. R., Alanazi, W. Y. B., Hussain, S., Hassan, S., & Elmorsy, E. (2025). Assessment of the Level of Knowledge and Attitude towards Down Syndrome among the Population of Arar City, Saudi Arabia. Bahrain Medical Bulletin, 47(2), 2113–2117. https://www.bahrainmedicalbulletin.com/June_2025/BMB-24-917.pdf

Alkahtani, F. H. (2022). Down Syndrome and its oral effects in Saudi Arabian region: A review of literature. Journal of Datta Meghe Institute of Medical Sciences University, 17(4), 1013–1018. https://doi.org/10.4103/jdmimsu.jdmimsu_433_22

Alqahtani, A. S., Algabbani, M. F., Alhammad, S. A., Alwadeai, K. S., & Alhusaini, A. (2024). Physical activity status and its association with quality of life among children with Down Syndrome in Saudi Arabia: A comparative cross-sectional study. PLOS One, 19(2), e0297111. https://doi.org/10.1371/journal.pone.0297111

Alshadfan, L., Deameh, M., Alhyary, A., Da’meh, M., El-Areidi, K., Sharqi, M., Alkayed, A., Da’meh, K., Ali, O. A., Alkhdour, G., Abu-Shai’rah, R., Akash, B., Alfaouri, M., & Abualhaj, S. (2025). Understanding the caregiver experience: a cross-sectional study of caregiver burden among those caring for chronically ill children in Jordan. BMJ Paediatrics Open, 9(1). e003610. https://doi.org/10.1136/bmjpo-2025-003610

Asa, G. A., Fauk, N. K., Ward, P. R., Hawke, K., Crutzen, R., & Mwanri, L. (2021). Psychological, sociocultural and economic coping strategies of mothers or female caregivers of children with a disability in Belu district, Indonesia. PloS one, 16(5), e0251274. https://doi.org/10.1371/journal.pone.0251274

Chiracu, A., Cosma, G. A., Stepan, A. R., Cosma, M. A., Corlaci, I., Călugăru, E. D. C., Voinea, F., Zăvăleanu, M., Burileanu, H. A., & Avramescu, T. (2023). Psychological capital, quality of life, and well-being in mother caregivers of individuals with down syndrome. Frontiers in psychology, 14, 1145104. https://doi.org/10.3389/fpsyg.2023.1145104

Chong, H. G. (2008). Measuring performance of small-and-medium sized enterprises: The grounded theory approach. Journal of Business and Public Affairs, 2(1), 1–11. https://dx.doi.org/10.2139/ssrn.5250565

Chow, K., Rezvan, P. H., Kazerooni, L., Nguyen, L., Boyd, N. K., Vogel, B. N., Lucas, M. C., Brown, R., Quinn, E. A., Jafarpour, S., & Santoro, J. D. (2025). Caregiver burden and familial impact in Down Syndrome Regression Disorder. Orphanet Journal of Rare Diseases, 20(1), 126. https://doi.org/10.1186/s13023-025-03644-0

Cohen, L., Manion, L., & Morrison, K. (2011). Research methods in education (7th ed.). Routledge.

Creswell, J. W. (2009). Research design: Qualitative, quantitative, and mixed methods approaches (3rd ed.). Sage Publications, Ltd.

Dalrymple, R. A., Somerville, L. H., Hamza, S., & Matta, N. (2022). Fifteen-minute consultation: The review of a child with Trisomy 21 (Down’s Syndrome). Archives of Disease in Childhood-Education and Practice, 107(2), 88–94. https://doi.org/10.1136/archdischild-2020-319814

De La Garza, E., Scott, A., Hillerstrom, H., Hendrix, J., & Rubenstein, E. (2024). Caregivers' concerns and supports needed to care for adults with Down syndrome. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 196(1), e32041. https://doi.org/10.1002/ajmg.c.32041

de Paor, E., King, E., McGuinness, S., & Guerin, S. (2025). Transition from School to Adult Life: Scoping Review of Perspectives of Young Adults with Intellectual Disabilities and Families. Disability & Society, 1-30. https://doi.org/10.1080/09687599.2025.2470740

Desimpelaere, E. N., De Clercq, L. E., Soenens, B., Prinzie, P., & De Pauw, S. S. (2024). Parenting a child with Down syndrome: A qualitative study on parents' experiences and behaviors from a self-determination theory perspective. Journal of Pediatric Nursing, 74, e14-e27. https://doi.org/10.1016/j.pedn.2023.10.021

Fani, O. R., Scheeren, A. M., de Jonge, M. V., Janssen, S. M., & de Vries, M. (2025). Distress and Coping Strategies Among Parents of Autistic Children in Malaysia and the Netherlands. Neurodiversity, 3, 1–14. https://doi.org/10.1177/27546330251353635

Fucà, E., Galassi, P., Costanzo, F., & Vicari, S. (2022). Parental perspectives on the quality of life of children with Down syndrome. Frontiers in Psychiatry, 13, 957876. https://doi.org/10.3389/fpsyt.2022.957876

Gashmard, R., Ahmadi, F., & Kermanshahi, S. M. K. (2020). Coping strategies adopted by Iranian families of children with Down syndrome: A qualitative study. Medicine, 99(28), e20753. https://doi.org/10.1097/md.0000000000020753

Goldie, M. J., Dobson, K. L., Munce, S. E., Killackey, T., Bayley, M., Stapleford, C., Kua, A., Perrier, L., & Kokorelias, K. M. (2024). Future care planning of adults with childhood-onset neurodevelopmental disabilities: A scoping review. Research in Developmental Disabilities, 154, 104843. https://doi.org/10.1016/j.ridd.2024.104843

Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903

Hammersley, M., & Atkinson, P. (2007). Ethnography: Principles in practice (3rd ed.). Routledge.

Herman, C., Eisenberg, Y., Vanderbom, K., Tempio, D., Gardner, J., & Rimmer, J. (2023). Feasibility of implementing disability inclusive evidence-based health promotion. Journal of Public Health Management and Practice, 29(1), 82-92. https://doi.org/10.1097/phh.0000000000001671

Jamir Singh, P. S., Azman, A., Drani, S., Mohd Nor, M. I. H., & Che Ahmad, A. (2023). Navigating the terrain of caregiving of children with intellectual and developmental disabilities: importance of benefit finding and optimism. Humanities and Social Sciences Communications, 10(1), 1-7. https://doi.org/10.1057/s41599-023-02211-x

Jogu, S., Sharma, R., Gupta, S., Shah, R., Panigrahi, I., & Kaur, A. (2023). Parents of Indian children with Down syndrome: Stigma and health related quality of life. Indian Journal of Pediatrics, 90(9), 943. https://doi.org/10.1007/s12098-023-04693-8

Lima-Rodriguez, J. S., de Medina-Moragas, A. J., Fernandez-Fernandez, M. J., & Lima-Serrano, M. (2022). Factors associated with quality of life in relatives of adults with serious mental illness: A systematic review. Community mental health journal, 58(7), 1361-1380. https://doi.org/10.1007/s10597-022-00948-4

Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic Inquiry. Sage Publications.

Luetke Lanfer, H., Anderson, E., Bah, F., Krawiec, S., Rossmann, C., & Vines, A. (2025). Experiences of stigma among caregivers of children with disabilities in Freetown. Scientific Reports, 15(1), 20236. https://doi.org/10.1038/s41598-025-07034-1

Mahmood, A., & Gul, A. (2023). Parental stress, familial burden and quality of life in parents of children with Down syndrome. Journal of Professional & Applied Psychology, 4(1), 61-70. https://doi.org/10.52053/jpap.v4i1.151

Marchal, J. P., van Oers, H. A., Maurice-Stam, H., Grootenhuis, M. A., van Trotsenburg, A. P., & Haverman, L. (2017). Distress and everyday problems in Dutch mothers and fathers of young adolescents with Down syndrome. Research in developmental disabilities, 67, 19-27. https://doi.org/10.1016/j.ridd.2017.05.005

Maxwell, J. A. (2013). Qualitative research design: An interactive approach (3rd ed.). Sage Publications, Ltd.

McGlinchey, E., Fortea, J., Vava, B., Andrews, Y., Ranchod, K., & Kleinhans, A. (2025). Raising awareness and addressing inequities for people with Down syndrome in South Africa. International Journal for Equity in Health, 24(1), 7. https://doi.org/10.1186/s12939-024-02349-3

Mendoza-García, A., Aparicio, A., Arango, P. S., & Tenorio, M. (2025). Exploring the feasibility and effectiveness of a naturalistic family centered intervention to enhance early interactions in toddlers with Down syndrome. Scientific Reports, 15(1), 12077. https://doi.org/10.1038/s41598-025-96803-z

Mohammed Elmwafie, S., Ibrahim Abdalla Ibrahim, A., Hamdy Abd Elmonem, H., Amin Sayed, M., & Ahmed, S. (2022). Effectiveness of coping strategies intervention on quality of life for mothers having children with Down syndrome. Egyptian Journal of Health Care, 13(2), 1696-1714. https://doi.org/10.21608/ejhc.2022.253722

Murray, L., & Lawrence, B. (2000). Practitioner-based enquiry: Principles for postgraduate research. Taylor & Francis Limited.

Musyafa, L., Ishaq, M., Dayati, U., & Luar Sekolah, P. (2024). Learning Community for Parents of Children with Down Syndrome to Increase Mother’s Awareness in Educating Their Children Better. Educational Administration: Theory and Practice, 30 (6), 92–98. https://kuey.net/index.php/kuey/article/view/5113

Noroozi, F., Farrar, Z., Gharibi, T., & Gashmard, R. (2024). Family self‐support in managing Down syndrome children: A qualitative study. The Scientific World Journal, 2024(1), 9992595. https://doi.org/10.1155/2024/9992595

Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Sage Publications, Ltd.

Ranta, K., Saarimäki, H., Gummerus, J., Virtanen, J., Peltomäki, S., & Kontu, E. (2025). Psychological interventions for parents of children with intellectual disabilities to enhance child behavioral outcomes or parental well-being: A systematic review, content analysis and effects. Journal of Intellectual Disabilities, 29(2), 500-535. https://doi.org/10.1177/17446295241302857

Ritchie, J., & Spencer, L. (2002). Qualitative data analysis for applied policy research. In A. M. Huberman & M. B. Miles (Eds.), The qualitative researcher’s companion (pp. 305–329). Sage Publications.

Ross, S., Jackisch, J., & Almquist, Y. B. (2025). Socioeconomic and psychosocial conditions of parents with children in out-of-home care: a qualitative systematic review. Children and Youth Services Review, 170, 108163. https://doi.org/10.1016/j.childyouth.2025.108163

Shahali, S., Tavousi, M., Sadighi, J., Kermani, R. M., & Rostami, R. (2024). Health challenges faced by parents of children with disabilities: a scoping review. BMC pediatrics, 24(1), 619. https://doi.org/10.1186/s12887-024-05104-3

Shahzad, S., & Manzoor, I. (2025). Quality of life of mothers having children with Down syndrome. Journal of Shalamar Medical & Dental College-JSHMDC, 6(1), 22-27. https://doi.org/10.53685/jshmdc.v6i1.289

Sharifian, P., Kuchaki, Z., & Shoghi, M. (2024). Effect of resilience training on stress, hope and psychological toughness of mothers living with mentally and physically disabled children. BMC pediatrics, 24(1), 354. https://doi.org/10.1186/s12887-024-04828-6

Shetty, J., Shetty, A., Mundkur, S. C., Dinesh, T. K., & Pundir, P. (2023). Economic burden on caregivers or parents with Down syndrome children-a systematic review protocol. Systematic Reviews, 12(1), 3. https://doi.org/10.1186/s13643-022-02165-2

Shewaikani, N., Al Refaei, A., Khamis, T., Oraikat, M., Abdalgani, N., Shalfawi, M., Abdelghani, F., & Masri, A. (2025). Public Knowledge and Attitude Toward Down Syndrome: A Nationwide Cross-sectional Survey in Jordan. JAPA Academy Journal, 3(2), 100-108. https://journals.lww.com/japa/fulltext/2025/04000/public_knowledge_and_attitude_toward_down.5.aspx?context=latestarticles

Soltani, A., & Esbensen, A. J. (2024). Role of child demographic, executive functions, and behavioral challenges on feelings about parenting among parents of youth with Down syndrome. Research in developmental disabilities, 148, 104717. https://doi.org/10.1016/j.ridd.2024.104717

Stafford, L., Novacevski, M., Pretorius, R., & Rogers, P. (2024). The makings of disability-inclusive sustainable communities: Perspectives from Australia. Urban Governance, 4(2), 113-121. https://doi.org/10.1016/j.ugj.2024.03.004

Steffensen, E. H., Santoro, S. L., Pedersen, L. H., Vogel, I., & Lou, S. (2024). Encounters with public and professional understandings of Down syndrome: A qualitative study of parents' experiences. Journal of Applied Research in Intellectual Disabilities, 37(3), e13221. https://doi.org/10.1111/jar.13221

Villaescusa, M., Martínez-Rueda, N., & Fernández, A. (2021). Support for families of youths and adults with intellectual disabilities: contributions of a program from families’ and specialists’ perspectives. Education Sciences, 11(2), 88. https://doi.org/10.3390/educsci11020088

Waugh, K. A., Wilkins, H. M., Smith, K. P., & Ptomey, L. T. (2025). Charting the future: Current and future directions in translational research for individuals with Down Syndrome. Journal of Neurodevelopmental Disorders, 17(1), 38. https://doi.org/10.1186/s11689-025-09630-8

Yaman, F. K., Ezveci, H., Dogru, S., Harmanci, M. S., Bahçeci, P., & Gezginç, K. (2025). The impact of advanced maternal age on pregnancy complications and neonatal outcomes. Journal of Clinical Medicine, 14(15), 5387. https://doi.org/10.3390/jcm14155387

Yazicioğlu, T., Yildirim, A. E. S., & Kumaş, Ö. A. (2024). Family stress and self-efficacy in parents of children with special needs: The regulatory role of perceived social support. Children and Youth Services Review, 163, 107804. https://doi.org/10.1016/j.childyouth.2024.107804

Zhang, X. N., Zhang, S., Liu, C. Y., Ni, Z. H., & Lv, H. T. (2025). Caregivers’ experience of having a child with Down syndrome: a meta-synthesis. BMC nursing, 24(1), 66. https://doi.org/10.1186/s12912-024-02652-y