A Family-Centered Community Rehabilitation Framework for Childhood Disability: A Conceptual Model Linking Family Empowerment, Ecological Systems, and Functional Participation
DOI:
https://doi.org/10.54878/hqdqqy90Keywords:
childhood disability, family-centered care, community-based rehabilitation, participation, ICF-CY, family empowerment, People of DeterminationAbstract
Childhood disability rehabilitation has, for much of its history, been organized around the clinic and the specialist rather than around the child's everyday life. This conceptual paper argues that such arrangements underuse the single most durable resource available to a child with a disability, namely the family embedded within its community. Drawing together the biopsychosocial logic of the International Classification of Functioning, Disability and Health for Children and Youth, family-systems thinking, Bronfenbrenner's ecological theory, and the practice principles of family-centered service and community-based rehabilitation, we propose the Family-Centered Community Rehabilitation (FCCR) framework. The framework is built from five interacting domains: family empowerment, community integration, equitable access, cultural responsiveness, and functional participation. We describe the assumptions that hold these domains together, trace the mechanisms through which family capacity is converted into a child's participation, and offer a transparent way of operationalizing the model through a weighted composite index and a small set of measurable indicators. An illustrative application shows how the framework can guide the redesign of a rehabilitation pathway in a setting such as the United Arab Emirates, where the language of “People of Determination” already signals a shift toward participation and rights. We close by acknowledging the limits of a conceptual contribution that still awaits empirical calibration, and by setting out a research agenda through which the framework could be tested. The intended contribution is integrative rather than novel in its parts: it gives practitioners and policymakers a single, coherent scaffold on which existing evidence about families, communities, and childhood disability can be organized and acted upon.References
Alghamdi, M. S., Chiarello, L. A., Palisano, R. J., & McCoy, S. W. (2017). Understanding participation of children with cerebral palsy in family and recreational activities. Research in Developmental Disabilities, 69, 96–104. https://doi.org/10.1016/j.ridd.2017.07.006
Alhumaidan, A. A., & Habbal, F. M. (2025). The effect of learning technologies on behavioral development among People of Determination in the UAE. International Journal of Rehabilitation & Disability Studies, 1(1), 4–13. https://doi.org/10.54878/yzgtf267
Almasri, N. A., An, M., & Palisano, R. J. (2018). Parents’ perception of receiving family-centered care for their children with physical disabilities: A meta-analysis. Physical & Occupational Therapy in Pediatrics, 38(4), 427–443. https://doi.org/10.1080/01942638.2017.1337664
Benfer, K. A., Novak, I., Morgan, C., Whittingham, K., Khan, N. Z., Ware, R. S., … Boyd, R. N. (2018). Community-based parent-delivered early detection and intervention programme for infants at high risk of cerebral palsy in a low-resource country (LEAP-CP): Protocol for a randomised controlled trial. BMJ Open, 8(6), e021186. https://doi.org/10.1136/bmjopen-2017-021186
Bouchouar, Y., & Achraouaou, H. (2025). Religious values and family care for children with disabilities: A field sociological study. International Journal of Rehabilitation & Disability Studies, 1(1), 27–40. https://doi.org/10.54878/mv629c93
Factor, R. S., Glass, L., Baertschi, D., & Laugeson, E. A. (2022). Remote PEERS for preschoolers: A pilot parent-mediated social skills intervention for young children with social challenges over telehealth. Frontiers in Psychiatry, 13, 1008485. https://doi.org/10.3389/fpsyt.2022.1008485
Faccioli, S., Pagliano, E., Ferrari, A., Maghini, C., Siani, M. F., Sgherri, G., … Sassi, S. (2023). Evidence-based management and motor rehabilitation of cerebral palsy children and adolescents: A systematic review. Frontiers in Neurology, 14, 1171224. https://doi.org/10.3389/fneur.2023.1171224
Hsieh, W. H., Lee, W. C., & Hsieh, R. L. (2018). Effects of a family-centered workshop for children with developmental delays. Medicine, 97(36), e12106. https://doi.org/10.1097/MD.0000000000012106
Jackman, M., Sakzewski, L., Morgan, C., Boyd, R. N., Brennan, S. E., Langdon, K., … Novak, I. (2022). Interventions to improve physical function for children and young people with cerebral palsy: International clinical practice guideline. Developmental Medicine & Child Neurology, 64(5), 536–549. https://doi.org/10.1111/dmcn.15055
King, S., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered service for children with cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology, 11(1), 78–86. https://doi.org/10.1016/j.spen.2004.01.009
Luna, P., Martinez, L. Z. L., Lalla, A. T., Addiss, D., & Penney, N. (2022). Photovoice lessons from a Peruvian program in combatting stigma for caregivers of children with disabilities. Progress in Community Health Partnerships, 16(4), 527–540. https://doi.org/10.1353/cpr.2022.0074
Nematifard, T., Norouzi Tabrizi, K., Arsalani, N., Fallahi-Khoshknab, M., & Borimnejad, L. (2023). The barriers to family-centered care in the pediatric rehabilitation ward: A qualitative study. Journal of Pediatric Nursing, 73, 120–129. https://doi.org/10.1016/j.pedn.2023.08.018
Opoku, M. P., Pearson, E., Elhoweris, H., Alhosani, N., Mustafa, A., Efstratopoulou, M., & Takriti, R. (2024). Fidelity of family centered care model to early disability diagnosis and rehabilitation in the United Arab Emirates. PLoS ONE, 19(4), e0301094. https://doi.org/10.1371/journal.pone.0301094
O’Toole, C., Lee, A. S. Y., Gibbon, F. E., van Bysterveldt, A. K., & Hart, N. J. (2018). Parent-mediated interventions for promoting communication and language development in young children with Down syndrome. Cochrane Database of Systematic Reviews, 10, CD012089. https://doi.org/10.1002/14651858.CD012089.pub2
Pritchard-Wiart, L., & Phelan, S. K. (2018). Goal setting in paediatric rehabilitation for children with motor disabilities: A scoping review. Clinical Rehabilitation, 32(7), 954–966. https://doi.org/10.1177/0269215518758484
Shaikh, S., Sayed, Y., Sahakyan, E., Muradyan, T., & Rubinger, J. (2025). A case study on the “We Read” (نقرأ) Literacy Lab: Using assistive technology as a transitional tool for inclusive education. International Journal of Rehabilitation & Disability Studies, 1(1), 14–26. https://doi.org/10.54878/3x3yhv70
Tan, S. S., Wiegerink, D. J. H. G., Vos, R. C., Smits, D. W., Voorman, J. M., Twisk, J. W. R., … Roebroeck, M. E. (2014). Developmental trajectories of social participation in individuals with cerebral palsy: A multicentre longitudinal study. Developmental Medicine & Child Neurology, 56(4), 370–377. https://doi.org/10.1111/dmcn.12343
World Health Organization. (2007). International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY). Geneva: World Health Organization.
World Health Organization. (2010). Community-based rehabilitation: CBR guidelines. Geneva: World Health Organization.