Barriers and Facilitators to Inclusive Healthcare for Children with Developmental Disabilities: A Qualitative Study of Caregiver and Healthcare Provider Perspectives

Elsi Rahmadani, Miniharianti Miniharianti, Dewi Aprilia Ningsih

Abstract


Introduction: Children with developmental disabilities frequently require long-term, multidisciplinary, and family-centered healthcare services. However, caregivers often encounter structural, logistical, communication, and professional barriers when accessing healthcare services for their children. Understanding both barriers and facilitators from caregiver and healthcare provider perspectives is essential for improving inclusive healthcare.

Objective: This study aimed to explore barriers and facilitators to inclusive healthcare for children with developmental disabilities from the perspectives of caregivers and healthcare providers.

Methods: A qualitative descriptive study was conducted using individual semi-structured interviews with 36 participants, consisting of 20 caregivers and 16 healthcare providers. Participants were recruited purposively from hospitals, rehabilitation centers, and community health facilities. Interviews were conducted individually, audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. Recruitment continued until thematic saturation was achieved, defined as the point at which no new codes, categories, or themes emerged across consecutive interviews.

Results: Six themes were identified: structural constraints within healthcare systems, accessibility and logistical barriers, communication dynamics between caregivers and healthcare providers, professional competency and training gaps, caregiver resilience and advocacy, and collaborative community-based support systems. Key barriers included limited specialized services, long waiting times, transportation difficulties, complex referral pathways, and insufficient provider training. Facilitators included caregiver advocacy, interdisciplinary collaboration, peer support networks, and community-based support systems.

Conclusion: Inclusive healthcare for children with developmental disabilities requires system-level improvements in healthcare infrastructure, referral coordination, provider training, family-centered communication, and community-based support. Strengthening these areas may improve equitable healthcare access, particularly in resource-constrained settings


Keywords


Inclusive healthcare; Developmental disabilities; Children with disabilities;

References


Adugna, M. B., Nabbouh, F., Shehata, S., & Ghahari, S. (2020). Barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-Saharan African countries: a scoping review. BMC health services research, 20(1), 15. https://doi.org/10.1186/s12913-019-4822-6

Alwadi, M. A., AlJameel, A. H., Baker, S. R., & Owens, J. (2024). Access to oral health care services for children with disabilities: a mixed methods systematic review. BMC Oral Health, 24(1), 1002. https://doi.org/10.1186/s12903-024-04767-9

Atnafu, D. D., Kuper, H., & Mbazzi, F. B. (2025). Left behind in primary healthcare: A qualitative exploration of healthcare experiences of people with disabilities in Ethiopia. PLOS global public health, 5(9), e0005147. https://doi.org/10.1371/journal.pgph.0005147

Babalola, T., Sanguedolce, G., Dipper, L., & Botting, N. (2024). Barriers and facilitators of healthcare access for autistic children in the UK: A systematic review. Review Journal of Autism and Developmental Disorders, 1-29. https://doi.org/10.1007/s40489-023-00420-3

Barnhardt, E. W., Martens, M., Andridge, R., & Walton, J. (2024). Caregiver-reported barriers to care for children and adults with Williams Syndrome. Journal of community genetics, 15(4), 375–386. https://doi.org/10.1007/s12687-024-00707-w

Clemente, K. A. P., Silva, S. V. D., Vieira, G. I., Bortoli, M. C., Toma, T. S., Ramos, V. D., & Brito, C. M. M. (2022). Barriers to the access of people with disabilities to health services: a scoping review. Revista de saude publica, 56, 64. https://doi.org/10.11606/s1518-8787.2022056003893

Hamilton, A. B., & Finley, E. P. (2019). Qualitative methods in implementation research: An introduction. Psychiatry research, 280, 112516. https://doi.org/10.1016/j.psychres.2019.112516

Hanson, J., Heslon, K., & Ogourtsova, T. (2023). Mental health services and resources for children with developmental disabilities and their families: scan of local practices, gaps, and opportunities created. Frontiers in Rehabilitation Sciences, 4, 1118769. https://doi.org/10.3389/fresc.2023.1118769

Harrison, J. A., Thomson, R., Banda, H. T., Mbera, G. B., Gregorius, S., Stenberg, B., & Marshall, T. (2020). Access to health care for people with disabilities in rural Malawi: what are the barriers?. BMC Public Health, 20(1), 833. https://doi.org/10.1186/s12889-020-08691-9

Hennink, M., & Kaiser, B. N. (2022). Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Social science & medicine (1982), 292, 114523. https://doi.org/10.1016/j.socscimed.2021.114523

Houtrow, A., Sabatini, C., & Jarvis, J. (2023). Health equity for children with disabilities. Journal of the Pediatric Orthopaedic Society of North America, 5(1), 634. https://doi.org/10.55275/JPOSNA-2023-634

Kieling, C., Buchweitz, C., Caye, A., Silvani, J., Ameis, S. H., Brunoni, A. R., ... & Szatmari, P. (2024). Worldwide prevalence and disability from mental disorders across childhood and adolescence: evidence from the global burden of disease study. JAMA psychiatry, 81(4), 347-356. https://doi.org/10.1001/jamapsychiatry.2023.5051

Kotsis, K., Thornicroft, G., Schafer, J. L., Serdari, A., Basta, M., Casella, C. B., ... & Salum, G. A. (2025). Barriers to Access to Care Evaluation Scale-Proxy Report (BACE-PR): evidence of reliability and validity for caregivers reporting on children and adolescents with mental health concerns in Greece. Administration and Policy in Mental Health and Mental Health Services Research, 52(5), 983-998. https://doi.org/10.1007/s10488-025-01466-7

Lindsay, S., Leo, S., Phonepraseuth, J., & Cao, P. (2025). A systematic review of racial health disparities among children and youth with physical disabilities. Disability and Rehabilitation, 47(14), 3484-3506. https://doi.org/10.1080/09638288.2024.2427347

Nelson, H. J., Munns, A., Angus, B., Arbuckle, E., & Burns, S. K. (2025). Facilitators and barriers of accessing community health services for children in the early years: An Australian qualitative study. Journal of Pediatric Nursing, 81, 1-7. https://doi.org/10.1016/j.pedn.2025.01.009

Ssemata, A. S., Smythe, T., Sande, S., Menya, A., Hameed, S., Waiswa, P., Bannink, F., & Kuper, H. (2024). Exploring the barriers to healthcare access among persons with disabilities: a qualitative study in rural Luuka district, Uganda. BMJ open, 14(11), e086194. https://doi.org/10.1136/bmjopen-2024-086194

Walsh, C., Lydon, S., Geoghegan, R., Carey, C., Creed, M., O’Loughlin, L., ... & O’Connor, P. (2021). Development and preliminary evaluation of a novel physician-report tool for assessing barriers to providing care to autistic patients. BMC Health Services Research, 21(1), 873. https://doi.org/10.1186/s12913-021-06842-1

World Health Organization. (2022). Global report on health equity for persons with disabilities. World Health Organization.

World Health Organization. (2024). Health equity for persons with disabilities: guide for action. World Health Organization.

Xiong, T., Kaltenbach, E., Yakovenko, I., Lebsack, J., & McGrath, P. J. (2022). How to measure barriers in accessing mental healthcare? Psychometric evaluation of a screening tool in parents of children with intellectual and developmental disabilities. BMC Health Services Research, 22(1), 1383. https://doi.org/10.1186/s12913-022-08762-0




DOI: https://doi.org/10.17509/jpki.v12i1.97969

Refbacks

  • There are currently no refbacks.


Bookmark and Share


Jurnal Pendidikan Keperawatan Indonesia(JPKI) published by Indonesia University of Education. JPKI is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License. 

View My Stats

Office :
Nursing Department. FPOK UPI.
229, Dr. Setiabudhi Street. Bandung 40154
West Java , Indonesia
E-mail : [email protected]