Quality of life of families raising children with disabilities (Lecture)
https://doi.org/10.66825/2949-4664-apps-3-4-26-35
Abstract
In modern society, the birth rate of children with disabilities is growing. Parents raising such children face a range of psychological, economic, and social challenges that require a deep understanding of psychological adjustment mechanisms. These parents are at a high risk of mental strain, as they must balance the intensified care for their child with other responsibilities. The resulting stress affects the quality of life of the entire family and may lead to symptoms of depression, sleep disturbance, chronic fatigue, and reduced social engagement. The psychological adaptation of parents raising children with disabilities is a complex and multifactorial process. The birth of a child with developmental disabilities often correlates with a disharmonious family system. Parental attitudes and parenting patterns influence the child’s development. Such families face significant challenges, demanding considerable effort, patience, and emotional resilience. As a result, parents may adopt either overprotective or, conversely, rejecting attitudes toward their child. The birth of a child with mental and physical disabilities may become a serious psychological trauma for parents due to failed expectations. Negative social attitudes toward children with disabilities and their families further exacerbate their position in society and lead to marginalization. Many such families are unable to cope with difficulties without external support. The aim of this lecture is to review modern information about the problematic aspects of psychological adaptation of parents raising children with disabilities.
About the Authors
A. I. Khavkin
Research Clinical Institute of Childhood; Belgorod State National Research University
Russian Federation
Competing Interests:
Russian Federation
Anatoly I. Khavkin, Dr. Sci. (Med.), Professor, Head of the A. V. Mazurin Moscow Regional Center of Pediatric Gastroenterology and Hepatology; Professor, Department of Pediatrics, Medical Institute, Belgorod
24A, Kominterna str., Mytischi, 141009;
85, Pobedy Str., Belgorod, 308015
Competing Interests:
The authors declare no conflict of interest.
A. N. Sultanova
Novosibirsk State Medical University
Russian Federation
Competing Interests:
Russian Federation
Aklima N. Sultanova, Dr. Sci. (Med.), Professor, Department of Psychiatry, Addiction, Psychotherapy, and Clinical Psychology
52, Krasny prospect, Novosibirsk, 630091
Competing Interests:
The authors declare no conflict of interest.
A. V. Nalyotov
Donetsk State Medical University named after M. Gorky
Russian Federation
Competing Interests:
Russian Federation
Andrew V. Nalyotov, Dr. Sci. (Med.), Professor, Head of the Department of Pediatrics № 2; Chief Pediatric Gastroenterologist, Ministry of Health of the Donetsk People’s Republic
16, Ilyicha ave., Donetsk, 283003, Donetsk People’s Republic
Competing Interests:
The authors declare no conflict of interest.
E. A. Balakireva
Belgorod State National Research University
Russian Federation
Competing Interests:
Russian Federation
Elena A. Balakireva, Dr. Sci. (Med.), Associate Professor, Head of the Department of Pediatrics, Doctor of Medical Sciences
85, Pobedy Str., Belgorod, 308015
Competing Interests:
The authors declare no conflict of interest.
References
1. Semenova L. E., Bozhkova E. D., Koneva I. A. Personal resources of psychological well-being of mothers raising children with disabilities. Vestnik of Minin University. 2022;10(1):5. (In Russ.). doi: 10.26795/2307-1281-2022-10-5.
2. Misiyuk Yu.V. & Tikhonova I. V. Russian Version of the Parental Stress Scale: Results of the Initial Assessment of Internal Reliability and Validity. Society: Sociology, Psychology, Pedagogics. 2022;(9):58–66. (In Russ.). doi:10.24158/spp.2022.9.9.
3. Padun M. A. Modification of the methodology for studying the basic beliefs of personality by R. Janoff-Bulman / M. A. Padun, A. V. Kotelnikova. Psychological Journal. 2008;29(4):98–106. EDN JHLATN.
4. Endicott J., Nee J., Harrison W., Blumenthal R. Quality of Life Enjoyment and Satisfaction Questionnaire: a new measure. Psychopharmacol Bull. 1993;29(2):321–6.
5. Kuftyak E. V., Silia O. V., Vasilyeva V. I. Psychological problems of the modern family. Cognition and experience. 2025;6(1):1–17. (In Russ.). doi: 10.51217/cogexp_2025_06_01_01.
6. Lei A., You H., Luo B., Ren J. The associations between infertility-related stress, family adaptability and family cohesion in infertile couples. Sci Rep. 2021;11(1):24220.
7. Family adaptation among parents of children on the autism spectrum without a comorbid intellectual disability: A test of the Double ABCX model / J. Meleady, F. Nearchou, J. Bramham, C. Carr. Research in Autism Spectrum Disorders. 2020;78:101–137.
8. Kamyshova E. V. The influence of the attitude towards accepting a disabled child on the social adaptation of parents. Theory and practice of social development. 2023;12:111–116. (In Russ.).
9. Van Riper M., Cosgrove B., Fleming L. Adaptation at the family level in families of individuals with Down syndrome: A Scoping Review. J Fam Nurs. 2023;29(4):324–347.
10. Tolokonnikova O. I., Proshkina A. V., Leshchenko S. G. Features of communication skills in children with general speech underdevelopment. Modern trends in the development of science and technology. 2016;5:157–159. (In Russ.).
11. Prodovikova A. G., Degtyannikova D. A. Psychological well-being and coping behavior of parents raising children with disabilities. Social and Humanitarian Sciences: Theory and Practice. 2021;1(5):301–316. (In Russ.).
12. Loza T. V. Styles of family education in families with children with disabilities. The world of science, culture, education. 2012;3(34):180–181. (In Russ.).
13. X- vs. Y-chromosome influences on human behavior: a deep phenotypic comparison of psychopathology in XXY and XYY syndromes / L. Schaffer, S. Rau, I. G. Larsen et al. J Neurodev Disord. 2024;16(1):56.
14. Dyachkova E. S., Bayandina T. V. Psychological characteristics of mothers raising children with disabilities. Medical Psychology in Russia. 2021;13(3):8. (In Russ.).
15. Eliseeva A. P. Features of resilience and stress resistance of parents raising children with disabilities. Scientific Notes of P. F. Lesgaft University. 2020;2(180):497–501. (In Russ.).
16. Karpushkina N. V., Samsonova N. L. On the problem of psychological support for parents of children with severe and multiple developmental disabilities. Problems of modern pedagogical education. 2022;74(2):262–264.
17. Adaptation of Parents Raising a Child with ASD: The Role of Positive Perceptions, Coping, Self-efficacy, and Social Support / L. Higgins, A. Mannion, J. L. Chen, G. Leader. Journal of Autism and Developmental Disorders. 2023;53(3):1224–1242.
18. Barroso N. E., Mendez L., Graziano P. A., Bagner D. M. Parenting stress through the lens of different clinical groups: A systematic review and meta-analysis. Journal of abnormal child psychology. 2018;46(3):449–461.
19. Halstead E. J., Griffith G. M., Hastings R. P. Social support, coping, and positive perceptions as potential protective factors for the well-being of mothers of children with intellectual and developmental disabilities. International Journal of Developmental Disabilities. 2018;64(5):288–296.
20. Geuze L., Goossensen A. Parents caring for children with normal life span threatening disabilities: a narrative review of literature. Scand J Caring Sci. 2019;33(2):279–297.
21. Hayes S. A., Watson S. L. 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. 2013;43:629–642.
22. Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review / A. Postma, M. Ketelaar, T.S. van Nispen. Child Care Health Dev. 2024;50(3): e13255.
23. Cultural determination of mental health and psychological well-being: methodological issues / L. A. Shaigerova, R. S. Shilko, Yu. P. Zinchenko et al. Bulletin of Moscow University. Series 14. Psychology. 2018;2:3–23. (In Russ.).
24. Jung E., Lee T., Kim J., Kim H. W. Children’s and Parents’ Factors That Affect Parenting Stress in Preschool Children with Developmental Disabilities or Typical Development. Psychiatry Investigation. 2023;20(12):1157–1167.
25. Безуглова А. А., Васильева О. С., Правдина Л. Р. Особенности социально-психологической адаптации у лиц с разными стратегиями совладающего поведения. Российский психологический журнал. 2017;14(4):180–204.
26. Psychological distress and coping strategies in breast cancer patients under neoadjuvant therapy: A systematic review. M. Omari, L. Amaadour, A. El Asri et al. Womens Health (Lond). 2024;20:17455057241276232.
27. Fairfax A., Brehaut J., Colman I. A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability. BMC Pediatr. 2019;19(1):215.
28. Coping strategies of parents of children with autism spectrum disorder: a systematic review / C. Vernhet, F. Dellapiazza, N. Blanc et al. Eur Child Adolesc Psychiatry. 2019;28(6):747–758.
29. Gostunskaya Ya. I. Features of coping behavior of parents raising children with intellectual disabilities. In the collection: Modern problems of psychology. Conference materials. 2018;375–377. (In Russ.).
30. Ryazheva M. V., Khazova S. A. Dynamics of coping behavior of parents raising a child with disabilities. Bulletin of Kostroma State University. Series: Pedagogy. Psychology. Sociokinetics. 2022;24(2):203–209. (In Russ.).
31. Grigorova T. P., Kryukova T. L. Features of attachment relationships between children and parents in foster families and their coping behavior. Bulletin of Kostroma State University. Series: Pedagogy. Psychology. Sociokinetics. 2016;3:121–127. (In Russ.).
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For citations:
Khavkin A.I., Sultanova A.N., Nalyotov A.V., Balakireva E.A. Quality of life of families raising children with disabilities (Lecture). Archives of Pediatrics and Pediatric Surgery. 2025;3(4):26-35. (In Russ.) https://doi.org/10.66825/2949-4664-apps-3-4-26-35
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