Keywords
caring
children
experience
profound intellectual disability
psychosocial
care worker
How to Cite
Abstract
Introduction
Caring for children with profound intellectual disabilities (ID) is a complex and demanding responsibility requiring continuous commitment. Care workers provide long-term support to children because of severe functional limitations, communication difficulties, and complex healthcare needs. This care provision requires adequate knowledge and skill in ID; however, while caring for children, the care workers' own psychosocial needs frequently become compromised. Their experiences and support needs remain insufficiently explored.
Purpose
To explore and describe the psychosocial burden experienced by care workers caring for children with profound intellectual disabilities.
Methods
A qualitative, exploratory, and descriptive research design was employed to gain an in-depth understanding of care workers’ experiences. Semi-structured interviews were conducted with 20 participants across three metropolitan municipalities in Gauteng Province, South Africa. Data were analyzed using thematic analysis, supported by ATLAS.ti, following Creswell’s six-step framework.
Results
Five primary themes emerged: emotional trauma (emotional distress, depression, and low self-esteem); psychological exhaustion (feeling overwhelmed, compassion, and spiritual questioning); psychological needs (access to psychological support services); altered social relationships (social withdrawal and isolation); and social needs (access to social support services).
Conclusions
The study highlights the psychosocial challenges associated with caregiving, which affect both professional functioning and personal well-being. The findings underscore the urgent need for comprehensive intervention strategies to promote care workers’ well-being.
References
American Psychiatric Association [APA]. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787
Fernández-Ávalos, M. I., Pérez-Marfil, M. N., Ferrer-Cascales, R., Cruz-Quintana, F., Clement-Carbonell, V., & Fernández-Alcántara, M. (2020). Quality of life and concerns in parents’ caregivers of adult children diagnosed with intellectual disability: A qualitative study. International Journal of Environmental Research and Public Health, 17(1), Article 342. https://doi.org/10.3390/ijerph17010342
Islam, M. A., Rahman, A., & Akhtar, S. (2021). Psychosocial impact of caring for children with intellectual disabilities in Bangladesh. International Journal of Public Health Science, 11(1), 211–219. https://doi.org/10.11591/ijphs.v11i1.21072
Leonard, H., Montgomery, A., Wolff, B., Strumpher, E., Masi, A., Woolfenden, S., Williams, K., Eapen, V., Finlay-Jones, A., Whitehouse, A., Symons, M., Licari, M., Alvares, G., Evans, K., Downs, J., & Glasson, E. (2022). A systematic review of the biological, social, and environmental determinants of intellectual disability in children and adolescents. Frontiers in Psychiatry, 13, Article 926681. https://doi.org/10.3389/fpsyt.2022.926681
Lindert, J. (2025). Social relationships, loneliness, and mental health. The European Journal of Public Health, 35(4), ckaf161.752. https://doi.org/10.1093/eurpub/ckaf161.752
Mladenov, T. (2022). The social model of disability, independent living, and the idea of “care”. Critique and Humanism Journal, 55(3), 9–24. https://hssfoundation.org/en/kx-55-2-2022/
Molefe, L. L. (2025). The financial challenges of caring for children with profound intellectual disability as experienced by newly qualified nurses. BMC Nursing, 24, Article 1082. https://doi.org/10.1186/s12912-025-03733-2
Moosa-Tayob, S., & Risenga, P. (2022). Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships, South Africa. African Journal of Disability, 11, Article a930. https://doi.org/10.4102/ajod.v11i0.930
Motswasele-Sikwane, L. K., Madumo, M. M., Tlapu, M. M., & Govender, I. (2020). The experiences of home-based care workers when rendering services in the communities in Northern Tshwane and Madibeng districts. South African Family Practice, 62(1), Article a5155. https://doi.org/10.4102/safp.v62i1.5155
O'Connor, E., & Corcoran, Y. (2021). Caring for a child with a life-limiting condition: The experiences of nurses in an intellectual disability service provider. Journal of Intellectual Disabilities, 25(4), 938–953. https://doi.org/10.1177/17446295211018588
Olusanya, B. O., Kancherla, V., Shaheen, A., Ogbo, F. A., & Davis, A. C. (2022). Global and regional prevalence of disabilities among children and adolescents: Analysis of findings from global health databases. Frontiers in Public Health, 10, Article 977453. https://doi.org/10.3389/fpubh.2022.977453
Opoku, M. P., Nketsia, W., Banye, M. A., Mprah, W. K., Dogbe, J. A., & Badu, E. (2020). Caregiving experiences and expectations of parents with in-school children with intellectual disability in Ghana. Research in Developmental Disabilities, 96, Article 103524. https://doi.org/10.1016/j.ridd.2019.103524
Raliphaswa, N., Maluleke, M., & Netshikweta, M. L. (2022). ‘Not my dream’: Mother’s challenge of raising an intellectual disability child in the Vhembe district. Health SA Gesondheid, 27, Article 1995. https://doi.org/10.4102/hsag.v27i0.1995
Rauf, A., Rook, L., Rajapakse, B., Lartey, J. K. S., & Almeida, S. (2024). Resource loss a significant issue for healthcare professionals: A case study of an Australian regional hospital. Stress and Health, 40(5), Article e3461. https://doi.org/10.1002/smi.3461
Santini, Z. I., Jose, P. E., Cornwell, E. Y., Koyanagi, A., Nielsen, L., Hinrichsen, C., Meilstrup, C., Madsen, K. R., & Koushede, V. (2020). Social disconnectedness, perceived isolation, and symptoms of depression and anxiety among older Americans (NSHAP): A longitudinal mediation analysis. The Lancet Public Health, 5(1), e62–e69. https://doi.org/10.1016/S2468-2667(19)30230-0
Schalock, R. L., Luckasson, R., & Tassé, M. J. (2021). Overview of intellectual disability: Definition, diagnosis, classification, and systems of supports (12th ed.). American Association on Intellectual and Developmental Disabilities.
Siewertsen, M., Näslund-Koch, C., Johansen, J. D., Simonsen, A. B., Nguyen, T. T., Zachariae, C., Skov, L., & Loft, N. (2024). Psychological burden, anxiety, depression, and quality of life in patients with hand eczema: A systematic review and meta-analysis. Journal of the European Academy of Dermatology and Venereology, 38(11), 2049–2050. https://doi.org/10.1111/jdv.2029
South African Government. (1993). Occupational Health and Safety Act 85 of 1993. Government Printer.
World Health Organization [WHO]. (2020). Disorders of intellectual development. International Classification of Diseases (11th rev.). https://icd.who.int/
World Health Organization [WHO]. (2023). Disability and health: Key facts. https://www.who.int/news-room/fact-sheets/detail/disability-and-health
Zhang, J., Meng, J., & Wen, X. (2025). The relationship between stress and academic burnout in college students: Evidence from longitudinal data on indirect effects. Frontiers in Psychology, 16, Article 1517920. https://doi.org/10.3389/fpsyg.2025.1517920
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