Through Their Eyes: Exploring the Lived Experiences of Mothers Raising Children with Intellectual Disabilities
DOI:
https://doi.org/10.62843/jssr.v6i1.690Keywords:
Caregiver Stress, Cultural Stigma, Intellectual Impairment, Lived ExperiencesAbstract
This phenomenological study examines the lived experiences of Pakistani mothers raising children with intellectual disabilities (ID) through Interpretative Phenomenological Analysis (IPA) to uncover emotional, social, financial, and psychological dimensions. Five participants, aged 18 to 55, were intentionally chosen using non-probability methods. Verbatim transcription was used, audio recording, and inductive analysis of semi-structured interview data to identify the main themes: Emotional resilience (spiritual coping from the Quran, personal growth); social impact/family dynamics (stigma as bad parents, threats of divorce, absence of a spouse, sibling rivalry); emotional challenges (diagnostic shock/denial, chronic anxiety from relying on kids, mother depression/exhaustion); financial issues and resource constraints (therapy costs versus low income, career sacrifice, lack of ID services in Pakistan, barriers to urban travel); and coping strategies and awareness gaps (limited NGO access, home routines, self-education, cultural myths of ID as punishment, need for mother-training workshops). These results address all objectives and research inquiries by elucidating real-life narratives, enduring social and personal disruptions, systemic obstacles, mental health expenditures, and adaptive mechanisms. Mothers show a lot of stress because of cultural stigma and lack of resources, but mothers also show faith-driven resilience. To lessen the burden on mothers and improve the health of families, the findings support immediate interventions in Pakistan, such as campaigns to raise awareness of stigma, telehealth services in rural areas, subsidized therapies, workshops for mothers that focus on coping, family support groups, and policy changes to make ID services more fair.
References
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders. American Psychiatric Association Publishing.
Barr, M. D., Govender, P., & Rencken, G. (2016). Raising a child with Down’s syndrome: perspectives from South African urban care-givers. African Health Sciences, 16(4), 929–935. https://doi.org/10.4314/ahs.v16i4.7
Baxter, C., Cummins, R. A., & Yiolitis, L. (2000). Parental stress attributed to family members with and without disability: A longitudinal study. Journal of Intellectual & Developmental Disability, 25(2), 105–118. https://doi.org/10.1080/13269780050033526
Blacher, J., & Tan Mink, I. (2008). Interviewing family members and care providers: Concepts, methodologies, and cultures. In The International Handbook of Applied Research in Intellectual Disabilities (pp. 133–159). John Wiley & Sons Ltd. https://doi.org/10.1002/9780470713198.ch6
Burns, C. O., Lemon, J., Granpeesheh, D., & Dixon, D. R. (2019). Interventions for daily living skills in individuals with intellectual disability: A 50-year systematic review. Advances in Neurodevelopmental Disorders, 3(3), 235–245. https://doi.org/10.1007/s41252-019-00114-0
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological bulletin, 98(2), 310-357. https://psycnet.apa.org/doi/10.1037/0033-2909.98.2.310
Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research, 47(Pt 4-5), 385–399. https://doi.org/10.1046/j.1365-2788.2003.00498.x
Goffman, E. (2009). Stigma: Notes on the management of spoiled identity. Simon and schuster.
Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49(Pt 6), 405–418. https://doi.org/10.1111/j.1365-2788.2005.00673.x
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y
Irfan, A., Ijaz, S., Tassahuq, S., Imtiaz, I., Asghar, M., & Arif, M. B. (2025). Lived experiences of female waitress in Pakistan. Insights-Journal of Health and Rehabilitation, 3(3 (Health&Allied)), 426–432. https://doi.org/10.71000/x6qvqs84
Jorm, A. F. (2012). Mental health literacy. American Psychologist, 67(3), 231–243.
Kersh, J., Hedvat, T. T., Hauser-Cram, P., & Warfield, M. E. (2006). The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50(Pt 12), 883–893. https://doi.org/10.1111/j.1365-2788.2006.00906.x
Kumari, S., & Kiran, D. M. (2024). Effect of brief psycho-education module on psychological wellbeing and family burden in caregivers of children with intellectual disability. International Journal of Intellectual Disability, 5(1), 52–57. https://doi.org/10.22271/27103889.2024.v5.i1a.44
Lakhani, A., Ali, T. S., Kramer-Roy, D., & Ashraf, D. (2024). Informal social support for families with children with an intellectual disability in Karachi, Pakistan: A qualitative exploratory study design. Heliyon, 10(20). https://doi.org/10.1016/j.heliyon.2024.e39221
Lazarus, R. S. (1984). Stress, appraisal, and coping (Vol. 445). Springer.
Lu, P., Sofia Amin, A., & Saim, N. J. (2026). From the parents’ perspective: qualitative exploration of caregiving challenges and coping strategies of children with intellectual disability. International Journal of Developmental Disabilities, 72(1), 162–175. https://doi.org/10.1080/20473869.2025.2537119
McConnell, D., More, R., Pacheco, L., Aunos, M., Hahn, L., & Feldman, M. (2022). Childhood experience, family support and parenting by people with intellectual disability. Journal of Intellectual & Developmental Disability, 47(2), 152–164. https://doi.org/10.3109/13668250.2021.1929880
McCubbin, H. I., & Patterson, J. M. (2014). The family stress process: The double ABCX model of adjustment and adaptation. In Social stress and the family (pp. 7-37). Routledge.
Mirza, M. (2009). The Effect of Aid Dependency and Quality of Institution in alleviating poverty in IDA countries. Empirical Economic Bulletin, An Undergraduate Journal, 2(1), 10.
Neoh, M. J. Y., Airoldi, L., Arshad, Z., Bin Eid, W., Esposito, G., & Dimitriou, D. (2022). Mental health of mothers of children with neurodevelopmental and genetic disorders in Pakistan. Behavioral Sciences, 12(6), 161. https://doi.org/10.3390/bs12060161
Olsen, S. F., Marshall, E. S., Mandleco, B. L., Allred, K. W., Dyches, T. T., & Sansom, N. (1999). Support, communication, and hardiness in families with children with disabilities. Journal of Family Nursing, 5(3), 275-291.
Oti-Boadi, M. (2017). Exploring the lived experiences of mothers of children with intellectual disability in Ghana. Sage Open, 7(4), 2158244017745578.
Pargament, K. I. (2001). The psychology of religion and coping: Theory, research, practice. Guilford press.
Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The gerontologist, 30(5), 583-594. https://doi.org/10.1093/geront/30.5.583
Plant, K. M., & Sanders, M. R. (2007). Predictors of care‐giver stress in families of preschool‐aged children with developmental disabilities. Journal of intellectual disability research, 51(2), 109-124. https://doi.org/10.1111/j.1365-2788.2006.00829.x
Scherer, N., Verhey, I., & Kuper, H. (2019). Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PloS one, 14(7), e0219888. https://doi.org/10.1371/journal.pone.0219888
Sheikh, M. H., Ashraf, S., Imran, N., Hussain, S., & Azeem, M. W. (2018). Psychiatric morbidity, perceived stress and ways of coping among parents of children with intellectual disability in Lahore, Pakistan. Cureus, 10(2). https://doi.org/10.7759/cureus.2200
Unicef. (2019). For every child, every right the convention on the rights of the child at a crossroads. United Nations Children’s Fund (UNICEF).
Wehmeyer, M. L. (2020). The importance of self-determination to the quality of life of people with intellectual disability: A perspective. International Journal of Environmental Research and Public Health, 17(19), 7121. https://doi.org/10.3390/ijerph17197121
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