HomePsychology and Education: A Multidisciplinary Journalvol. 43 no. 6 (2025)

Psychological Well-Being and Resilience of Parents of Children With Neurodevelopmental Disorders: Basis for Well-Being Program

Jessie DL. Biscocho

Discipline: others in psychology

 

Abstract:

Parents of children with neurodevelopmental disorders (NDDs) face unique challenges and experiences that shape their lives and the well-being of their families. Support networks, both professional and community-based, can help in assisting parents in managing these challenges. This study examined the relationship between Psychological Well-being (PWB) and Resilience of parents of children with NDDs. It also seeks to find the moderating role of NDDs to the relationship between the two variables. This also investigated if the domains of PWB are significant predictors of resilience. The participants were selected based on the given criteria. One hundred fifty-four (N=154) parents of children with NDD were able to completely answer the survey questionnaires to measure their level of psychological well-being (PWB) and resilience. Data collection utilized online forms and face-to-face distribution of the Ryffs Psychological Wellbeing Scales and the Brief Resilience Scale (BRS). The result showed a significant positive correlation between PWB and Resilience (r=0.054, p=0.001). Moreover, the majority of the respondents are in the moderately high level of the overall psychological well-being and the medium low level of resilience. When grouped according to the types of NDD, it shows that the overall psychological well-being of parents of children with ASD and GDD predicts resilience, but not with the group of parents of children with ADHD. Moreover, the type of NDD does not moderate the relationship of two variables. Also, the findings provide a basis for the construction of welfare program necessary to support and strengthen resilience of the above-mentioned population.



References:

  1. Aivalioti, I. and Pezirkianidis, C. (2020) The Role of Family Resilience on Parental Well-Being and Resilience Levels. Psychology, 11, 1705-1728. doi: 10.4236/psych.2020.1111108.
  2. Akhtayeva, N., Kosherbayeva, L., Imamatdinova, A., Šmigelskas, K. (2024). Wellbeing of parents raising children with autism spectrum disorder and the role of psychologists. Archives of Medical Science. https://doi.org/10.5114/aoms/190772
  3. Almogbel, Y.S., Goyal, R. & Sansgiry, S.S. Association Between Parenting Stress and Functional Impairment Among Children Diagnosed with Neurodevelopmental Disorders. Community Ment Health J 53, 405–414 (2017). https://doi.org/10.1007/s10597-017-0096-9
  4. Alrahili, N. Burnout and anxiety among parents of children with neurodevelopmental disorders: a cross-sectional study in Saudi Arabia. Middle East Curr Psychiatry 30, 58 (2023). https://doi.org/10.1186/s43045-023-00331-3
  5. Alsa, Asmadi & Sovitriana, Rila & Ekasari, Agustina & Endri, Endri. (2021). Psychological Well-being of Mothers with Autistic Children. Journal of Educational and Social Research. 11. 247. 10.36941/jesr-2021-0144.
  6. American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787
  7. American Psychological Association. Resilience (no date). Available at: https://www.apa.org/topics/resilience (Accessed: 18 June 2024).
  8. Balagan, MB. (2022). Parenting Experience of Mothers with Children Diagnosed with ADHD: Insights from Positive Psychology Perspective. International Journal of Learning and Development. 12. 111. 10.5296/ijld.v12i4.20421.
  9. Cachia, R. L., Anderson, A., & Moore, D. W. (2016). Mindfulness, stress and well-being in parents of children with Autism Spectrum Disorder: A Systematic Review. Journal of Child and Family Studies, 25(1), 1 - 14. https://doi.org/10.1007/s10826-015-0193-8
  10. Cénat JM, Blais-Rochette C, Morse C, et al. Prevalence and Risk Factors Associated With Attention-Deficit/Hyperactivity Disorder Among US Black Individuals: A Systematic Review and Meta-analysis. JAMA Psychiatry. 2021;78(1):21–28. doi:10.1001/jamapsychiatry.2020.2788
  11. Centers for Disease Control and Prevention. (2024). About attention-deficit / hyperactivity disorder (ADHD)  Available at: https://www.cdc.gov/adhd/about/index.html (Accessed: 17 June 2024).
  12. Cheung, K., & Theule, J. (2016). Parental psychopathology in families of children with ADHD: A meta-analysis. Journal of Child and Family Studies, 25(12), 3451–3461. https://doi.org/10.1007/s10826-016-0499-1
  13. Children Rehabilitation Centre (2023). Global Developmental Delay. Available at https://childrehab.in/disorders/global-developmental-delay/ (Accessed: 2023)
  14. Coghlan, D., & Brydon-Miller, M. (2014). Quantitative methods. In The SAGE Encyclopedia of Action Research (Vol. 2, pp. 670-673). SAGE Publications Ltd, https://doi.org/10.4135/9781446294406
  15. Collins, J.O. (2023). Exploring Family Resilience And Connectedness During A Pandemic  In Families Raising A Child With A Neurodevelopmental Disorder. University of Missouri, Kansas City.
  16. Craig, F., Operto, F. F., De Giacomo, A., Margari, L., Frolli, A., Conson, M., Ivagnes, S., Monaco, M., & Margari, F. (2016). Parenting stress among parents of children with Neurodevelopmental Disorders. Psychiatry research, 242, 121–129. https://doi.org/10.1016/j.psychres.2016.05.016
  17. Daulay N. (2021).  The moderating effect of types of child’s neurodevelopmental disorder on the relationship between Indonesian mothers’ perception of child’s maladaptive behaviour and maternal parenting stress. Int J Dev Disabil. 2021 Feb 4;68(5):692-702.  doi: 10.1080/20473869.2021.1880686. PMID: 36210896; PMCID: PMC9542945.
  18. Dennis, Meredith & Neece, Cameron & Fenning, Rachel. (2018). Investigating the Influence of Parenting Stress on Child Behavior Problems in Children with Developmental Delay: The Role of Parent-Child Relational Factors. Advances in Neurodevelopmental Disorders. 2. 10.1007/s41252-017-0044-2.
  19. Faden, S. Y., Merdad, N., & Faden, Y. A. (2023). Parents of Children With Neurodevelopmental Disorders: A Mixed Methods Approach to Understanding Quality of Life, Stress, and Perceived Social Support. Cureus, 15(4), e37356. https://doi.org/10.7759/cureus.37356
  20. Fallahchai R., Fallahi M. (2022). Parental stress and dyadic adjustment among parents of children with ASD: Moderating effects of dyadic coping and perceived social support. https://doi.org/10.1016/j.ridd.2022.104192
  21. Fariñas, M. R. P., & Saamong, C. R. S. (2021). Strategies and challenges of parents in managing behaviors of children with special needs undergoing therapy. College of Home Economics, University of the Philippines Diliman.
  22. Flores-Buils, R., & Andrés-Roqueta, C. (2022). Factors influencing resilience of parents with children with neurodevelopmental disorders: The role of structural language, social cognition, and social support. Frontiers in psychiatry, 13, 886590. https://doi.org/10.3389/fpsyt.2022.886590
  23. Fong, V., Gardiner, E., & Iarocci, G. (2021). Satisfaction with informal supports predicts resilience in families of children with autism spectrum disorder. Autism, 25(2), 452-463. https://doi.org/10.1177/1362361320962677
  24. Fung S. F. (2020). Validity of the Brief Resilience Scale and Brief Resilient Coping Scale in a Chinese Sample. International journal of environmental research and public health, 17(4), 1265. https://doi.org/10.3390/ijerph17041265
  25. Glenn, E. P. (2023). Pathways to Parenting Stress and Challenging Behaviors for Preschoolers With Developmental Delays: The Role of Emotion Regulation (Order No. 29257344). Available from ProQuest Dissertations & Theses Global. (2900473650). https://www.proquest.com/dissertations-theses/pathways-parenting-stress-challenging-behaviors/docview/2900473650/se-2
  26. 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
  27. Herbell, K, Breitenstein, SM, Melnyk, BM, Guo, J. Family resilience and flourishment: Well-being among children with mental, emotional, and behavioral disorders. Res Nurs Health. 2020; 43: 465– 477. https://doi.org/10.1002/nur.22066
  28. Hoyle, J. N., Laditka, J. N., & Laditka, S. B. (2021). Mental health risks of parents of children with developmental disabilities: A nationally representative study in the United States. Disability and health journal, 14(2), 101020. https://doi.org/10.1016/j.dhjo.2020.101020
  29. Hoseini, B. L., Ajilian Abbasi, M., Taghizadeh Moghaddam, H., Khademi, G., & Saeidi, M. (2014). Attention Deficit Hyperactivity Disorder (ADHD) in Children:A Short Review and Literature. International Journal of Pediatrics, 2(4.3), 445-452. doi: 10.22038/ijp.2014.3749
  30. Huppert FA. Psychological well-being: Evidence regarding its causes and consequences. Applied Psychology: Health and Well-Being. 2009;. DOI: 10.1111/j.1758-0854.2009.01008.x
  31. Ivanova, K. (2024). Review On Multi-Component Training Programs For Parents Of Children With Neurodevelopmental Disabilities And Direct-Care Staff. Education–Journal Of Educational Research, 6(11-12), 87-92.
  32. Lai, Wei & Goh, Tze Jui & Oei, Tian Po & Sung, Min. (2015). Coping and Well-Being in Parents of Children with Autism Spectrum Disorders (ASD). Journal of autism and developmental disorders. 45. 10.1007/s10803-015-2430-9.
  33. La Madrid Carpena, G. (2015). Predictors of family resilience in families of children with autism spectrum disorder (Order No. 10000269). Available from ProQuest Dissertations & Theses Global. (1759163154). https://www.proquest.com/dissertations-theses/predictors-family-resilience-families-children/docview/1759163154/se-2
  34. Lasco G, Nuevo CEL, Nolasco MLP, Famaloan FRAN, Bundoc JR, Capili DIS, Bermejo R. “It’s as if I’m the one suffering”: Narratives of Parents of Children with Disability in the Philippines. Acta Med Philipp [Internet]. 2022Apr.28 [cited 2024Jun.17];56(7). Available from: https://actamedicaphilippina.upm.edu.ph/index.php/acta/article/view/658
  35. Leitch, S., Sciberras, E., Post, B., Gerner, B., Rinehart, N., Nicholson, J. M., & Evans, S. (2019). Experience of stress in parents of children with ADHD: A qualitative study. International journal of qualitative studies on health and well-being, 14(1), 1690091. https://doi.org/10.1080/17482631.2019.1690091
  36. Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14.DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1
  37. Mak, M.C.K., Yin, L., Li, M. et al. The Relation between Parenting Stress and Child Behavior Problems: Negative Parenting Styles as Mediator. J Child Fam Stud 29, 2993–3003 (2020). https://doi.org/10.1007/s10826-020-01785-3
  38. McConnell D, Savage A, Breitkreuz R.(2014) Resilience in families raising children with disabilities and behavior problems. Res Dev Disabil, 2014; 35(4): 833–848.
  39. Meleady, J., Clyne, C., Braham, J., and Carr, A. (2020). Positive contributions among parents of children on the autism spectrum: a systematic review. Res. Autism Spectr. Disord. 78:101635. doi: 10.1016/j.rasd.2020.101635
  40. Menezes, M., Soland, J. & Mazurek, M.O. Association Between Neighborhood Support and Family Resilience in Households with Autistic Children. J Autism Dev Disord 54, 1765–1773 (2024). https://doi.org/10.1007/s10803-023-05951-6
  41. Miller, C. J., & Brooker, B. (2017). Mindfulness programming for parents and teachers of children with ADHD. Complementary therapies in clinical practice, 28, 108-115.
  42. Mustafa, Q.M.; Iqbal, M.I.M.; Paramita, P.P.; Mahmudiono, T. Sociodemographic Factors, Parental Stress, and Depressive Symptoms among Mothers of Children with ADHD. Proceedings 2022, 82, 96. https://doi.org/10.3390/proceedings2022082096
  43. National Institute of Mental Health. (2023). U.S. Department of Health and Human Services. Attention-deficit/hyperactivity disorder. https://www.nimh.nih.gov/health/topics/attention-deficit-hyperactivity-disorder-adhd (Accessed: 18 June 2024).
  44. National Institute of Mental Health. (2024). Attention-Deficit/Hyperactivity Disorder: What You Need to Know. https://www.nimh.nih.gov/health/publications/attention-deficit-hyperactivity-disorder-what-you-need-to-know
  45. National Institute of Mental Health. (2024). Autism spectrum disorder. Available at: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd (Accessed: 17 June 2024).
  46. Narayana Health (2019). Understanding Global Developmental Delay (Gdd) In Children.
  47. Ong, C. S. Y., Magiati, I., Maybery, M. T., Rodgers, J., Uljarevic, M., & Alvares, G. A. (2023). Parental perspectives of the everyday experiences of uncertainty among young children on the autism spectrum. Research in Autism Spectrum Disorders, 101 (102087). https://doi.org/10.1016/j.rasd.2022.102087
  48. Panula, V., Junttila, N., Aromaa, M. et al. Parental Psychosocial Well-Being as a Predictor of the Social Competence of a Child. J Child Fam Stud 29, 3004–3019 (2020). https://doi.org/10.1007/s10826-020-01790-6
  49. Parameswari, S., & Eljo, D.J. (2017). “ A Study on Psychological Well Being among the Parents of Children with Intellectual and Developmental Disabilities ”.
  50. Patel, S., Rivard, M., Mello, C., and Morin, D. (2022). Parenting stress within mother-father dyads raising a young child with autism spectrum disorder.
  51. Peer, J. W., & Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 92–98. https://doi.org/10.1111/jppi.12072
  52. Philippine Health Insurance Corporation (no date). PhilHealth Circular No. 2017-0029 Z Benefits for Children with Developmental Disabilities
  53. Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., Alessandri, G., Lega, I., & Nardocci, F. (2018). Parental Burden and its Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre Study with Two Comparison Groups. Clinical practice and epidemiology in mental health : CP & EMH, 14, 143–176. https://doi.org/10.2174/1745017901814010143
  54. Purpura, G., Tagliabue, L., Petri, S., Cerroni, F., Mazzarini, A., & Nacinovich, R. (2021). Caregivers’ Burden of School-Aged Children with Neurodevelopmental Disorders: Implications for Family-Centred Care. Brain Sciences, 11(7), 875. https://doi.org/10.3390/brainsci11070875
  55. Psychiatry.Org. What Is Autism Spectrum Disorder?.  Psychiatry.org Available at: https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder (Accessed: 17 June 2024).
  56. Psychiatry.org (2022) - What is ADHD https://www.psychiatry.org/patients-families/adhd/what-is-adhd
  57. Rajan, A. M., & John, R. (2017). Resilience and impact of children’s intellectual disability on Indian parents. Journal of Intellectual Disabilities, 21(4), 315-324. https://doi.org/10.1177/1744629516654588
  58. Rajan, Anugraha & Romate, J. & Srikrishna, G.. (2016). Resilience of parents having children with intellectual disability: Influence of parent and child related demographic factors. Indian Journal of Health and Wellbeing. 7. 707-710.
  59. Reyes, A. L., & Herrin, J. A. C. (2009). A Five-Year Review of Referrals to the Developmental Pediatrics Section of a Major Tertiary Hospital. Acta Medica Philippina, 43(3). https://doi.org/10.47895/amp.v43i3.2683
  60. Robertson, I. (no date). What is psychological wellbeing?, Robertson Cooper. Available at: https://www.robertsoncooper.com/blog/what-is-psychological-wellbeing/ (Accessed: 15 June 2024).
  61. Rouhani, A., & Hemati Alamdarloo, G. (2022). Social support in parents of children with neurodevelopmental disorders. International Journal of Developmental Disabilities, 70(5), 879–886. https://doi.org/10.1080/20473869.2022.2154923
  62. Ryff, C. D. (1989). Happiness is everything, or is it? explorations on the meaning of psychological well-being. J. Pers. Soc. Psychol. 57, 1069–1081. doi: 10.1037/0022-3514.57.6.1069
  63. Ryff, C. D. (2014). Psychological well-being revisited: Advances in the science and practice of eudaimonia. Psychotherapy and Psychosomatics, 83(1), 10-28. doi:10.1159/000353263
  64. Scandurra, V., Emberti Gialloreti, L., Barbanera, F., Scordo, M. R., Pierini, A., & Canitano, R. (2019). Neurodevelopmental Disorders and Adaptive Functions: A Study of Children With Autism Spectrum Disorders (ASD) and/or Attention Deficit and Hyperactivity Disorder (ADHD). Frontiers in psychiatry, 10, 673. https://doi.org/10.3389/fpsyt.2019.00673
  65. Smith, B. W., Dalen, J., Wiggins, K., Tooley, E., Christopher, P., & Bernard, J. (2008). The brief resilience scale: Assessing the ability to bounce back. International Journal of Behavioral Medicine, 15(3), 194–200. doi:10.1080/10705500802222972
  66. Spielfogel, S. A. (2023). Resilience in Families with Children on the Autism Spectrum: Meaning-Making and Social Support (Order No. 30523170). Available from ProQuest Dissertations & Theses Global. (2822174623). https://www.proquest.com/dissertations-theses/resilience-families-with-children-on-autism/docview/2822174623/se-2
  67. Springer, K. W., & Hauser, R. M. (2006). An assessment of the construct validity of Ryff’s Scales of Psychological Well-Being: Method, mode, and measurement effects. Social Science Research, 35(4), 1080–1102. https://doi.org/10.1016/j.ssresearch.2005.07.004
  68. Susmarini, D., Ninh, D. T., & Shin, H. (2024). Family resilience and caregiver’s well-being across different age groups of children with ADHD in the United States: a cross-sectional study. Child health nursing research, 30(2), 97–107. https://doi.org/10.4094/chnr.2024.003
  69. Schwartzman, J. M., Millan, M. E., & Gengoux, G. W. (2022). Predictors of self-reported resilience in parents of autistic children. Research in Autism Spectrum Disorders, 94, 101954.
  70. The Neuro-Cognitive and Behavioral Institute. Neurodevelopmental Disorders. https://neuroci.com/neurodevelopmental-disorders/
  71. Theule, J., Wiener, J., Tannock, R., & Jenkins, J. M. (2013). Parenting stress in families of children with ADHD: A meta-analysis. Journal of Emotional and Behavioral Disorders, 21(1), 3–17. https://doi.org/10.1177/1063426610387433
  72. Walsh, F. (1996). The concept of family resilience: crisis and challenge. Fam. Process 35, 261–281. doi: 10.1111/j.1545-5300.1996.00261.x
  73. Walsh, F. (2003). Family resilience: A framework for clinical practice. Fam. Process.
  74. Widyawati, Y., Scholte, R., Kleemans, T. et al. Parental Resilience and Quality of Life in Children with Developmental Disabilities in Indonesia: The Role of Protective Factors. J Dev Phys Disabil 35, 743–758 (2023). https://doi.org/10.1007/s10882-022-09878-1