DEMOGRAPHICS MEDIATOR ON SOCIO-PSYCHOLOGICAL FACTORS ON DOWN SYNDROME PARENTS' PSYCHOLOGICAL WELL-BEING
Abstract
This study investigated the psychological well-being of parents raising children with Down syndrome, specifically examining how stigma, social support, and self-acceptance influence their mental state. A key objective was to explore the mediating effects of demographic factors, such as parental age, education level, household income, and the child's age, within this intricate relationship. We employed a quantitative research approach, utilizing a mediator factor method. A total of 351 parents residing in Riau province, each with a child diagnosed with Down syndrome, participated. Their psychological well-being, demographic information, perceived stigma, social support networks, and parental self-acceptance were assessed using a series of standardized psychological scales. The collected data underwent rigorous analysis using the mediator factor method, which allowed us to uncover the indirect influences of demographic variables. Furthermore, regression and correlation analyses were conducted to thoroughly explore the interplay between self-acceptance, perceived stigma, and the availability of social support on the parents' overall psychological well-being. The findings indicate that demographic factors exert a significant mediating influence on the connection between having a child with a disability and the parents' psychological well-being. These results are crucial, suggesting that efforts to enhance the psychological well-being of these parents should not solely focus on direct psychological interventions. Instead, a more comprehensive approach is needed, one that also considers the broader socioeconomic and structural factors that significantly impact their daily lives and overall well-beingReferences
Alcaraz, K. I., Leyva, B., & Ellison, B. A. (2020). Health literacy and cancer control: A systematic review. American Journal of Preventive Medicine, 59(2), e109-e127. https://doi.org/10.1016/j.amepre.2020.02.012
Amsalem, D., Smith, S. M., & Mallett, C. (2022). Peer support and mental health: A systematic review. Psychiatric Services, 73(5), 527-537. https://doi.org/10.1176/appi.ps.202100373
Antonarakis, S. E., Skotko, B. G., & Reeves, R. H. (2022). Down syndrome: From understanding the genome to modulating the brain. Annual Review of Neuroscience, 45, 1-22.
Augustine, A. A., & Khaw, L. S. (2022). Emotion-focused coping and psychological well-being in parents of children with disabilities. Journal of Child and Family Studies, 31(2), 527-537. https://doi.org/10.1007/s10836-021-02058-2 Bandura, A. (1977). Social learning theory. Prentice-Hall.
Baltes, P. B., & Smith, J. (2003). New frontiers in the future of aging: From successful aging of the young old to the dilemmas of the oldest old. Gerontology, 49(3), 123-135. https://doi.org/10.1159/000067645
Bandura, A. (2001). Social cognitive theory: An agentic perspective. Annual Review of Psychology, 52(1), 1–26. https://doi.org/10.1146/annurev.psych.52.1.1
Breiner, H. (2016). Parenting perspectives on Down syndrome. Nova Science Publishers.
Breiner, H. (2016). Parenting perspectives on Down syndrome. Nova Science Publishers.
Brown, L., Chen, R., & Kim, S. (2020). Government policies and their impact on families with children with disabilities. Journal of Disability Policy Studies, 31(3), 135-146. https://doi.org/10.1177/1044207320914567
Cachia, R. L., Bezzina, F., Cassar, S., & Cauchi, M. (2020). The stigma of intellectual disability and Down syndrome: A systematic review. Journal of Applied Research in Intellectual Disabilities, 33(6), 1317-1335.
Cantwell, J., De Jager, L., & Devenish, M. (2020). Psychological wellbeing in parents of children with Down syndrome: A systematic review. Journal of Child and Family Studies, 29(10), 2738-2751.
Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic Medicine, 38(5), 300-314.
Cohen, S. (1994). Social support and health. In S. Cohen & L. Herbert (Eds.), Handbook of stress: Theoretical and clinical aspects (pp. 235-260). The Free Press.
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310-357. https://doi.org/10.1037/0033-2909.98.2.310
Cohen, S., Frank, E., Doyle, W. J., Skoner, D. P., Rabin, B. S., & Gwaltney, J. M. (1994). Types of stressors that increase susceptibility to the common cold in healthy adults. Health Psychology, 13(2), 130-138. https://doi.org/10.1037/0278-6133.13.2.130
Cook, J. E., & Dickens, C. (2020). Perceived stigma and psychological distress in parents of children with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research, 64(3), 159-178.
Craig, A. B., Tincani, M., & Allday, R. A. (2020). Perceived social support and psychological well-being in parents of children with developmental disabilities. Journal of Developmental and Physical Disabilities, 32(1), 1-17.
Dardas, L. A., & Ahmad, M. M. (2021). The stigma of disability: A review of the literature and recommendations for future research. Journal of Nursing Scholarship, 53(4), 481-490. https://doi.org/10.1111/jnu.12660
Dube, A. K., Smith, L., & Johnson, P. (2021). Inclusive education and access to health services for children with Down syndrome: A review. Journal of Pediatric Rehabilitation, 44(2), 189-200. https://doi.org/10.1080/09638288.2020.1865432
Ertem, F. B., Ayas, T., & Gürsoy, S. (2021). Challenges faced by families of children with Down syndrome: A qualitative study. Journal of Pediatric Nursing, 57, 1-7. https://doi.org/10.1016/j.pedn.2020.10.009
Esbensen, A. J. (2022). Psychosocial well-being in individuals with Down syndrome. Current Opinion in Psychiatry, 35(2), 97-102.
Falk, N. A., Croom, N. C., & Lee, M. K. (2021). Stigma and shame in parents of children with intellectual disabilities: A qualitative study. Journal of Applied Research in Intellectual Disabilities, 34(2), 486-495.
Garbe, A., Brown, J., & Wilson, B. (2020). The role of demographic factors in moderating the impact of stigma on psychological well-being. Journal of Applied Social Psychology, 50(12), 705-716. https://doi.org/10.1111/jasp.12741
Garcia, S., & Martinez, E. (2025). Parental education and training: Impact on employment and economic well-being for families with disabled children. Journal of Family Economic Issues, 46(1), 1-15. https://doi.org/10.1007/s10834-024-09950-8
Gove, M., Hall, M., & Kelly, M. (2020). Parental self-acceptance and well-being in parents of children with intellectual disabilities. Journal of Child and Family Studies, 29(4), 1083-1092.
Green, E. J., & Davies, R. A. (2023). Income and access to quality education: A systematic review. Educational Research Review, 39, 100523. https://doi.org/10.1016/j.edurev.2023.100523
Grieco, N., Lee, C., & Hotez, P. J. (2021). The global burden of Down syndrome: A systematic review. The Lancet Global Health, 9(8), e1044-e1053.
Halstead, J., Roulstone, A., & Tilley, L. (2018). The social model of disability: An introduction. Bristol University Press.
Hampton, P., & Keyes, C. L. M. (2023). Problem-focused coping and mental health outcomes: A longitudinal study. Journal of Health Psychology, 28(5), 456-467. https://doi.org/10.1177/13591053221147040
Harris, K., & Chen, Y. (2024). Government initiatives and disability inclusion: Promoting autonomy through education and employment. Disability & Society, 39(2), 223-240. https://doi.org/10.1080/09687599.2023.2201234
Hill-Briggs, F., Gemmell, L., & Smith, M. (2021). The impact of socioeconomic status on diabetes self-management: A systematic review. Diabetes Research and Clinical Practice, 171, 108581. https://doi.org/10.1016/j.diabres.2020.108581
I Gusti Ayu Agung Sri Laksmi Chandra Astiti, & Tience Debora Valentina. (2024). Peran dukungan sosial dan penerimaan diri terhadap kesejahteraan psikologis orang tua anak dengan sindrom Down. Jurnal Psikologi Udayana, 11(1), 1-10.
Johnson, P. B., & Lee, K. R. (2022). Advocacy and public policy for disability rights: A global perspective. International Journal of Disability, Development and Education, 69(4), 480-495. https://doi.org/10.1080/1034912X.2021.1966543
Johnson, R. S., Smith, P. A., & Williams, L. B. (2022). Age and parental adjustment to childhood disability: A longitudinal study. Journal of Developmental Psychology, 43(1), 78-92. https://doi.org/10.1037/dev0000123
Kamil, H., Sari, D. P., & Handayani, N. (2023). Faktor-faktor yang berhubungan dengan kesejahteraan psikologis orang tua anak dengan disabilitas di Indonesia. Jurnal Psikologi Indonesia, 12(2), 123-134.
Kaplan, B. H., Cassel, J. C., & Gore, S. (1983). Social support and health: A review of the literature. In C. L. Cooper (Ed.), Stress research: Issues for the eighties (pp. 283-311). John Wiley & Sons.
Kong, T., Wu, H., & Liu, X. (2021). Social structures, stigma, and psychological well-being in parents of children with Down Syndrome: A cross-cultural study. Journal of Cross-Cultural Psychology, 52(5), 450-465. https://doi.org/10.1177/00220221211012345
Lai, C., Ho, E. K., & Chan, S. (2020). Stigma, social support, and self-acceptance among parents of children with special needs: A systematic review. Journal of Pediatric Nursing, 55, 12-21.
Lalvani, P. (2021). The experience of stigma in parents of children with intellectual disabilities: A narrative review. Journal of Intellectual Disabilities, 25(1), 3-17.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
Lebert-Charron, A., Tremblay, R. E., & Côté, S. M. (2020). Parental anxiety and the future of their child with an intellectual disability: A systematic review. Journal of Intellectual Disability Research, 64(9), 657-672.
Lee, Y., & Park, S. (2025). The role of education in fostering self-acceptance among parents of children with disabilities. Journal of Applied Developmental Psychology, 96, 101738. https://doi.org/10.1016/j.appdev.2024.101738
Levasseur, M., Généreux, M., Desrosiers, J., & Roy, M. (2015). Social participation of older adults: A scoping review. Journal of Aging and Health, 27(7), 1109-1141. https://doi.org/10.1177/0898264315582375
Luthar, S. S., & Cicchetti, D. (2017). The construct of resilience: Implications for interventions and future research. Journal of Human Development and Capabilities, 18(1), 1-17. https://doi.org/10.1080/19452829.2016.1264356
Martin, P. D., & Daniels, F. M. (2012). The cognitive-transactional model of stress and coping. In S. G. Goldstein & J. L. Greene (Eds.), The Oxford handbook of stress and coping (pp. 53-70). Oxford University Press.
Matthews, L., D'Acre, C., & Green, J. M. (2021). Parental education and child health outcomes: A systematic review. Journal of Health and Social Behavior, 62(2), 173-190. https://doi.org/10.1177/0022146521990429
Melati, S., Rahman, A., & Astuti, R. (2023). Beban finansial dan kesejahteraan psikologis orang tua anak dengan disabilitas di Indonesia: Studi kualitatif. Jurnal Kesehatan Masyarakat Nasional, 18(1), 45-56.
Mirowsky, J., & Ross, C. E. (2020). Social causes of psychological distress (2nd ed.). Routledge.
Nunik, W., Hidayah, R., & Lestari, S. (2022). Persepsi stigma dan dukungan sosial terhadap anak dengan sindrom Down di masyarakat Jawa. Jurnal Kesehatan Masyarakat Indonesia, 17(2), 89-100.
O'Dell, N., Baker, A., & O’Donnell, M. (2021). Age and adaptation to parenting children with disabilities: A narrative review. Journal of Family Studies, 27(3), 362-378. https://doi.org/10.1080/13229400.2021.1895679
Oliver, M. (2013). The social model of disability: Theory, policy and practice. Policy Press.
Ozbay, F., Johnson, D. C., & Charney, D. S. (2021). Social support moderates the relationship between trauma exposure and PTSD symptoms in veterans. Journal of Traumatic Stress, 34(3), 540-549. https://doi.org/10.1002/jts.22659
Pisula, E., & Porębowicz, E. (2021). Financial burden and psychological well-being of parents of children with developmental disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities, 34(1), 22-35.
Przybylski, A. K., & Weinstein, N. (2021). A systematic review of self-determination theory and intellectual disability: Implications for well-being. Journal of Intellectual Disability Research, 65(3), 221-235.
Raymaker, D. M., Evert, M., & Garcia, S. (2020). Emotional exhaustion in parents of children with intellectual and developmental disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities, 33(5), 987-1001.
Reynolds, K. D., Miller, K. M., & Johnson, A. M. (2022). Income inequality and access to social support services: A systematic review. Journal of Social Service Research, 48(4), 585-600. https://doi.org/10.1080/01488376.2021.1986429
Ruberton, P. M., Proulx, T., & Zelenski, J. M. (2022). Income and psychological well-being: A review of the literature. In C. L. M. Keyes (Ed.), The Oxford handbook of positive psychology (3rd ed., pp. 317-330). Oxford University Press.
Saputra, R., Hidayat, A., & Suryani, N. (2021). Dukungan informasi dan kesejahteraan psikologis orang tua anak dengan disabilitas. Jurnal Ilmu Keperawatan Jiwa, 9(3), 221-230.
Schiappacasse, S., Benítez, A., & Lillo, J. (2021). Education as a protective factor against the effects of stigma in parents of children with disabilities: A qualitative study. Journal of Intellectual Disabilities, 25(4), 374-388. https://doi.org/10.1177/17446295211029279
Scott, M., Taylor, R., & Smith, J. (2021). The impact of social stigma on the psychological well-being of parents of children with intellectual disabilities: A systematic review. Journal of Intellectual Disabilities, 25(2), 157-171.
Shandra, C. L., & Shandra, J. M. (2023). Disability stigma and social determinants of health: A conceptual framework. Social Science & Medicine, 320, 115729. https://doi.org/10.1016/j.socscimed.2023.115729
Shoshani, A., & Steinmetz, S. (2020). Parental guilt and psychological well-being: A systematic review. Journal of Child and Family Studies, 29(8), 2111-2125.
Simorangkir, E. T., Simanjuntak, S. N., & Purba, P. T. (2023). Kesejahteraan psikologis orang tua anak dengan sindrom Down di Medan. Jurnal Ilmu Keperawatan Jiwa, 11(2), 167-176.
Smith, J., & Jones, A. (2023). Creating inclusive environments: The role of parental psychological well-being. Journal of Applied Developmental Psychology, 88, 101567. https://doi.org/10.1016/j.appdev.2023.101567
Spector, M., & Kitsuse, J. I. (2017). Constructing social problems. Routledge.
Thompson, L., & White, K. (2024). Parental education, coping strategies, and self-acceptance in families of children with chronic conditions. Journal of Pediatric Psychology, 49(1), 1-10. https://doi.org/10.1093/jpepsy/jsae001
Van den Berg, M., & Verburg, R. M. (2023). Parental age and economic stability: A review of recent literature. Journal of Family Economic Issues, 44(1), 1-15. https://doi.org/10.1007/s10834-022-09852-z
Verma, S., & Varma, A. (2022). Psychological well-being of parents having children with Down syndrome: A systematic review. Journal of Family Medicine and Primary Care, 11(11), 6982-6988. https://doi.org/10.4103/jfmpc.jfmpc_908_22
Wang, L., Cao, X., & Liu, Y. (2021). Social support and coping strategies among parents of children with disabilities: A systematic review. Research in Developmental Disabilities, 110, 103859. https://doi.org/10.1016/j.ridd.2020.103859
Wang, L., Cao, X., & Liu, Y. (2021). Social support and coping strategies among parents of children with disabilities: A systematic review. Research in Developmental Disabilities, 110, 103859. https://doi.org/10.1016/j.ridd.2020.103859
Williams, R., & Davis, M. (2021). Public policy and disability inclusion: Enhancing access to education and support services. Journal of Education Policy, 36(6), 720-735. https://doi.org/10.1080/02680939.2020.1789012
Yang, L., & Zhang, Y. (2023). Social stigma and its impact on parents of children with developmental disabilities: A systematic review. Research in Developmental Disabilities, 132, 104374. https://doi.org/10.1016/j.ridd.2022.104374.
Downloads
Additional Files
Published
Issue
Section
License
It is the author's responsibility to ensure that his or her submitted work does not infringe any existing copyright. Furthermore, the author indemnifies the editors and publisher against any breach of such a warranty. Authors should obtain permission to reproduce or adapt copyrighted material and provide evidence of approval upon submitting the final version of a manuscript. This journal does not allow the author(s) to hold the copyright without restrictions or retain publishing rights without restrictions.
