Maternal Stress and Health Quality of Life in Mothers with Special Needs Children: Four-Track Social Policy Recommendations Led by Social Work

Öz

Objective: Mothers of special needs children in Pakistan, and across the world, are marginalized populations facing combined challenges of social shame and policy neglect. This study aims to (i) investigate the prevalence of and relationship between maternal stress, social support, and health quality of life in mothers with special needs children and (ii) identify the moderating effects of social support on maternal stress and health quality of life. Methods: A total of 103 mothers of special needs children attending government special needs schools in Pakistan have been sampled from the cities of Gujranwala and Lahore, the fifth and second largest cities of the country. A cross-sectional survey has been used for data collection, compiled from three standardized international tools: The World Health Organization Quality of Life; The Family Crisis Oriented Personal Evaluation Scales; and the Parental Stress Scale. Special needs children have been used to perform hierarchal multiple regression. Results: Mothers of special needs children in the country face high levels of stress, receive low levels of social support, and perceive unsatisfactory health quality of life. Social support predicted health quality of life (β=0.286, p <.01) and was a moderator for the relationship between maternal stress and health quality of life (ΔR2=0.003, ΔF=1.463, p < .05). Conclusion: Policy development and interventions are needed through a four-track approach including reformation in cultural values to improve social support; state provision for financial relief; opportunities for education and employment for special needs children; and improvement in healthcare service quality.

Anahtar Kelimeler

• Health quality of life
• maternal stress
• mothers
• social support
• special needs children

Maternal Stress and Health Quality of Life in Mothers with Special Needs Children: Four-Track Social Policy Recommendations Led by Social Work

Öz

Objective: Mothers of special needs children in Pakistan, and across the world, are marginalized populations facing combined challenges of social shame and policy neglect. This study aims to (i) investigate the prevalence of and relationship between maternal stress, social support, and health quality of life in mothers with special needs children and (ii) identify the moderating effects of social support on maternal stress and health quality of life. Methods: A total of 103 mothers of special needs children attending government special needs schools in Pakistan have been sampled from the cities of Gujranwala and Lahore, the fifth and second largest cities of the country. A cross-sectional survey has been used for data collection, compiled from three standardized international tools: The World Health Organization Quality of Life; The Family Crisis Oriented Personal Evaluation Scales; and the Parental Stress Scale. Special needs children have been used to perform hierarchal multiple regression. Results: Mothers of special needs children in the country face high levels of stress, receive low levels of social support, and perceive unsatisfactory health quality of life. Social support predicted health quality of life (β=0.286, p <.01) and was a moderator for the relationship between maternal stress and health quality of life (ΔR2=0.003, ΔF=1.463, p < .05). Conclusion: Policy development and interventions are needed through a four-track approach including reformation in cultural values to improve social support; state provision for financial relief; opportunities for education and employment for special needs children; and improvement in healthcare service quality.

Anahtar Kelimeler

• Health quality of life
• maternal stress
• mothers
• social support
• special needs children

Kaynakça

1. Ahmed, A. N., & Raj, S. P. (2022). Self-compassion intervention for parents of children with developmental disabilities: A feasibility study. Advances in Neurodevelopmental Disorders, 1–13. [CrossRef]
2. Alabri, W. (2023). Maternal perspectives: The needs of Saudi families of children with Down’s syndrome. Journal of Intellectual Disabilities, 27(1), 221–237. [CrossRef]
3. Ashfaq, M., & Bashir, M. (2021). Pakistan: Making a “COVID budget” in a struggling economy. Journal of Public Budgeting, Accounting and Financial Management, 33(1), 69–77. [CrossRef]
4. Banda, D. R., Carter, S. L., & Nguyen, T. (2022). A qualitative study of financial concerns of mothers’ of adults with intellectual and developmental disabilities. International Journal of Developmental Disabilities, 1–13. [CrossRef]
5. Berry, J. O., & Jones, W. H. (1995). The Parental Stress Scale: Initial Psychometric Evidence. Journal of Social and Personal Relationships, 12(3), 463–472. [CrossRef]
6. Calderwood, C., Breaux, R., Ten Brummelhuis, L. L., Mitropoulos, T., & Swanson, C. S. (2022). When daily challenges become too much during COVID-19: Implications of family and work demands for work–life balance among parents of children with special needs. Journal of Occupational Health Psychology, 27(5), 516–527. [CrossRef]
7. Chauhdry, N. (2022). Pakistan’s national policy for persons with disabilities and national plan of action–A critical review. Children Rights Journal of Rawalpindi Medical University, 2(1), 38–45.
8. Dizdarevic, A., Memisevic, H., Osmanovic, A., & Mujezinovic, A. (2022). Family quality of life: Perceptions of parents of children with developmental disabilities in Bosnia and Herzegovina. International Journal of Developmental Disabilities, 68(3), 274–280. [CrossRef]

9. Finardi, G., Paleari, F. G., & Fincham, F. D. (2022). Parenting a child with learning disabilities: Mothers’ self-forgiveness, well-being, and parental behaviors. Journal of Child and Family Studies, 31(9), 2454–2471. [CrossRef]
10. Findling, Y., Barnoy, S., & Itzhaki, M. (2022). Burden of treatment, emotion work and parental burnout of mothers to children with or without special needs: A pilot study. Current Psychology, 1–13. [CrossRef]
11. Gyan, C., & Mfoafo-M’Carthy, M. (2022). Women’s participation in community development in rural Ghana: The effects of colonialism, neoliberalism, and patriarchy. Community Development, 53(3), 295–308. [CrossRef]
12. Hardy, M. A. (1993). Regression with dummy variables. Sage.
13. Hessami, K., Romanelli, C., Chiurazzi, M., & Cozzolino, M. (2022). COVID-19 pandemic and maternal mental health: A systematic review and meta-analysis. Journal of Maternal-Fetal and Neonatal Medicine, 35(20), 4014–4021. [CrossRef]
14. Hussain, S., Alam, A., & Ullah, S. (2022). Challenges to persons with disabilities in Pakistan: A review of literature. Journal of Social Sciences Review, 2(3), 35–42. [CrossRef]
15. Insan, N., Weke, A., Rankin, J., & Forrest, S. (2022). Perceptions and attitudes around perinatal mental health in Bangladesh, India and Pakistan: A systematic review of qualitative data. BMC Pregnancy and Childbirth, 22(1), 293. [CrossRef]
16. Jafree, S. R. (2020). The sociology of South Asian women’s health. Springer.
17. Jafree, S. R., & Burhan, M. S. K. (2020). Special needs parents of Pakistan: Identifying policy to reduce risks of sexual abuse in special needs children. J. Safer Society for Children, 7. http://ssc.itu.edu.pk/wp-content/uploads/2020/07/SSC_Conference_Proceedings_FD_FINAL_FR.pdf#page=12
18. Kilinc, S. (2022). Mothers of children without disabilities’ conceptions of inclusive education: Unveiling an exclusionary education system privileging normality and ableism. Disability and Society, 37(10), 1678–1702. [CrossRef]
19. Kwok, K., & Kwok Lai Yuk Ching, S. (2022). Navigating stigma and discrimination: Experiences of migrant children with special needs and their families in accessing education and healthcare in Hong Kong. International Journal of Environmental Research and Public Health, 19(10), 5929. [CrossRef]
20. Laar, R., Zhang, J., Yu, T., Qi, H., & Ashraf, M. A. (2019). Constraints to women’s participation in sports: A study of participation of Pakistani female students in physical activities. International Journal of Sport Policy and Politics, 11(3), 385–397. [CrossRef]
21. Lamba, N., Van Tonder, A., Shrivastava, A., & Raghavan, A. (2022). Exploring challenges and support structures of mothers with children with autism Spectrum Disorder in the United Arab Emirates. Research in Developmental Disabilities, 120, 104138. [CrossRef]
22. McCubbin, H. I., Olson, D. H., & Larsen, A. S. (1991). Family Crisis Oriented Personal Evaluation Scales (F-COPES) [Database record]. APA PsycTests. [CrossRef]
23. Mitra, S., & Sambamoorthi, U. J. D. (2014). Disability prevalence among adults: Estimates for 54 countries and progress toward a global estimate. Disability and Rehabilitation, 36(11), 940–947. [CrossRef]
24. 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. [CrossRef]
25. Neris, R. R., Bolis, L. O., Leite, A. C. A. B., & Alvarenga, W. Garcia-Vivar, C., & Nascimento, L. C. (2023). Functioning of structurally diverse families living with adolescents and children with chronic disease: A metasynthesis. J. Journal of Nursing Scholarship, 55(2), 413–428. [CrossRef]
26. Oti-Boadi, M., Osei-Tutu, A., & Mate-Kole, C. C. (2022). Challenges and support needs of parents of children with developmental disabilities (DD) in Accra, Ghana. Research in Developmental Disabilities, 128, 104274. [CrossRef]
27. Pakistan Bureau of Statistics (2020). Population by age groups. Retrieved from http://www.pbs.gov.pk/sites/default/files//tables/POPULATION %20BY%205%20YEAR%20AGE%20GROUPS%20-%20PAKISTAN.pdf
28. Park, G. A., & Lee, O. N. (2022). The moderating effect of social support on parental stress and depression in mothers of children with disabilities. Occupational Therapy International, 2022, 5162954. [CrossRef]
29. Rathod, S., Pinninti, N., Irfan, M., Gorczynski, P., Rathod, P., Gega, L., & Naeem, F. (2017). Mental health service provision in low-and middleincome countries. Health Services Insights, 10, 1178632917694350. [CrossRef]
30. Ren, J., Li, X., Chen, S., Chen, S., & Nie, Y. (2020). The influence of factors such as parenting stress and social support on the state anxiety in parents of special needs children during the COVID-19 epidemic. Frontiers in Psychology, 11, 565393. [CrossRef]
31. Rizvi Jafree, S., & Burhan, S. K. (2020). Health challenges of mothers with special needs children in Pakistan and the importance of integrating health social workers. Social Work in Health Care, 59(6), 408–429. [CrossRef]
32. Sajjad, S., Asad, S., Gul, A., & Ghauri, A. A. (2022). Quiet ego, perceived social support, and subjective well-being in mothers having children diagnosed with autism spectrum disorder. Research in Autism Spectrum Disorders, 97, 102006. [CrossRef]
33. Santos, J. R. A. (1999). Cronbach’s alpha: A tool for assessing the reliability of scales. Journal of Extension, 37(2), 1–5.
34. Satherley, D., & Norwich, B. (2022). Parents’ experiences of choosing a special school for their children. European Journal of Special Needs Education, 37(6), 950–964. [CrossRef]
35. Seppälä, P., Vornanen, R., & Toikko, T. (2021). Are children with a number of disabilities and long-term illnesses at increased risk of mental violence, disciplinary violence, and serious violence? Journal of Interpersonal Violence, 36(23–24), 11409–11434. [CrossRef]
36. Shaukat, S. (2022). Challenges for education of children with disabilities in Pakistan. Intervention in School and Clinic, 1-6. [CrossRef]
37. Taderera, C., & Hall, H. (2017). Challenges faced by parents of children with learning disabilities in Opuwo, Namibia. African Journal of Disability, 6, 283. [CrossRef]
38. World Health Organization (1998). Development of the World Health Organization WHOQOL-bref quality of life assessment. Psychological Medicine, 28(3), 551–558. [CrossRef]
39. World population review (2020). Population of cities in Pakistan (2020). Retrieved from http://worldpopulationreview.com/countries/pakistan-population/cities/
40. Yamaoka, Y., Doi, S., Isumi, A., & Fujiwara, T. (2022). Health and social relationships of mothers of children in special education schools. Research in Developmental Disabilities, 131, 104374. [CrossRef]