The hidden cost of caring: Caregiver burden in neurodevelopmental disorders
DOI:
https://doi.org/10.33448/rsd-v14i12.50303Keywords:
Caregiver burden, Neurodevelopmental disorders, Mental health, Psychological resilience.Abstract
Introduction: Caregivers of children with Neurodevelopmental Disorders (NDDs) experience a multidimensional burden that affects their physical, emotional, social, and financial well-being. This burden is intensified in contexts marked by social vulnerability, limited specialized services, and persistent stigma. Symptom severity — such as autism, intellectual disabilities, and complex comorbidities — further increases caregiving demands. This article aims to discuss the nature of caregiver burden among parents of children with NDDs, examining the factors that shape it and the intervention strategies suggested in recent literature. Methods: An integrative literature review was conducted following a structured methodological framework. Articles published between 2015 and 2025 were identified in PubMed using descriptors related to caregiver burden and neurodevelopmental disorders. Results: Eighteen studies met the inclusion criteria. Findings consistently indicated high levels of psychological distress, fatigue, sleep disturbances, and social isolation among caregivers. Interventions such as telehealth, peer support, and family-centered practices demonstrated positive outcomes in reducing stress and strengthening resilience. Discussion: The analysis shows that caregiver burden arises not only from clinical demands but also from structural factors, including inequitable access to services and insufficient public policies. Resilience-promoting strategies and multiprofessional support can mitigate these effects, but they remain underutilized in underserved settings. Conclusion: Caregiver burden represents a significant public-health concern requiring intersectoral action. Strengthening inclusive policies, expanding access to specialized and telehealth services, and improving professional training are essential to support caregivers and promote better developmental outcomes for children with neurodevelopmental disorders.
References
Ademosu, T., Olorunfemi, O., Brahmbhatt, K., Albright, K., Cluver, L., Singla, D. R., & Abubakar, A. (2021). Burden, impact, and needs of caregivers of children living with mental health or neurodevelopmental conditions in low-income and middle-income countries: A scoping review. The Lancet Psychiatry, 8(10), 919–928.
Badesha, M., Cohn, E. R., & Morkos, M. (2023). Caregiver burden interventions in speech-language pathology: A systematic review. International Journal of Language & Communication Disorders, 58(4), 1335–1356.
Banga, G., & Ghosh, S. (2017). The impact of affiliate stigma on the psychological well-being of mothers of children with specific learning disabilities in India: The mediating role of subjective burden. Journal of Applied Research in Intellectual Disabilities, 30(5), 958–969.
Bhatia, M. S., Srivastava, S., Gautam, P., & Kaur, J. (2015). Burden assessment, psychiatric morbidity, and their correlates in caregivers of patients with intellectual disability. East Asian Archives of Psychiatry, 25(4), 159–163.
Chakraborti, M., Raj, S., & Kandasamy, P. (2021). Understanding the implications of peer support for families of children with neurodevelopmental and intellectual disabilities: A scoping review. Frontiers in Public Health, 9, 719640.
De Leeuw, A., Schippers, A., & Lommers, M. (2024). The impact of raising a child with a developmental or physical health condition in Ethiopia. Research in Developmental Disabilities, 148, 104716.
Kelson, E., & Dorstyn, D. (2025). Telehealth as a psychological intervention for caregivers of children with neurodevelopmental disorders: A systematic review with effect sizes. Journal of Autism and Developmental Disorders, 55(1), 43–58.
Keniş‑Coşkun, Ö., Yalçin, G., & Mutlu, A. (2020). The relationship between caregiver burden and resilience and quality of life in a Turkish pediatric rehabilitation facility. Journal of Pediatric Nursing, 52, e108–e113.
Klein, E. S., Wilson, B. N., & Cairney, J. (2024). Caregiver burden and mental health: Parent perspectives when raising a child with developmental coordination disorder. Research in Developmental Disabilities, 144, 104656.
Kowanda, M., van der Vaart, T., & van den Heuvel, E. (2021). Availability of services and caregiver burden: Supporting individuals with neurogenetic conditions during the COVID‑19 pandemic. Journal of Child Neurology, 36(9), 760–767.
Maridal, H. K., Sommer, M., Karki, R., & Baral, B. (2021). Psychological distress among caregivers of children with neurodevelopmental disorders in Nepal. International Journal of Environmental Research and Public Health, 18(5), 2460.
Materula, D., Chicumbe, S., Bucuane, G., et al. (2024). Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives. Research in Developmental Disabilities, 153, 104815.
Nam, S.‑J., & Park, E.‑Y. (2017). Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea. Journal of Mental Health, 26(1), 50–56.
Pandey, S., & Sharma, C. (2018). Perceived burden in caregivers of children with Autism Spectrum Disorder. Journal of Nepal Health Research Council, 16(2), 184–189.
Patel, A. D., Choudhary, V., & Goyal, P. (2022). Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder. Asian Journal of Psychiatry, 70, 103030.
Purpura, G., Tagliabue, L., & Conti, E. (2021). Caregivers’ burden of school-aged children with neurodevelopmental disorders: Implications for family‑centred care. Brain Sciences, 11(7), 875.
Souza, M. T., Silva, M. D., & Carvalho, R. (2010). Integrative review: What is it? How to do it? Einstein, 8(1), 102–106.
Turnage, D., & Conner, N. (2022). Quality of life of parents of children with Autism Spectrum Disorder: An integrative literature review. Journal for Specialists in Pediatric Nursing, 27(4), e12391.
Zorcec, T., & Pop‑Jordanova, N. (2020). Main needs and challenges of parents of children with Autism Spectrum Disorder. Prilozi, 41(2), 81–88.
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Mauro Marques Lopes, Maria Hilea Santos Costa
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.
