Parentification of the Eldest Sibling in the Care of a Sibling with Special Needs and Multiple Disabilities (Cerebral Palsy, Autism and Epilepsy)
Downloads
This study examines the phenomenon of parentification experienced by a 20-year-old elder sibling who cares for a younger sibling with dual special needs (Cerebral Palsy, Autism Spectrum Disorder, and Epilepsy) aged 12 years. Parentification occurs after the subject loses their father at age 16, leading them to take on significant caregiving and family responsibilities. The research employs a case study approach with a qualitative method, involving in-depth interviews, participatory observation, and supporting documentation. The findings indicate that the subject plays a significant emotional and instrumental role, including caring for the sibling, assisting with household chores, and contributing financially while continuing their education. This role impacts their personal life, especially in managing time and prioritizing between college, work, and caregiving. Despite the heavy burden, the subject demonstrates maturity, independence, and a high sense of responsibility. The study emphasizes the importance of social support and appropriate interventions to assist children and adolescents experiencing parentification, particularly in families with children with special needs. These findings are expected to serve as a basis for developing family support programs and enhancing psychosocial well-being.
Alirahmi, M., Kikhavani, S., & Soleimannejad, H. (2024). Compare the effectiveness of two treatments, behavioral activation and acceptance and commitment therapy, on depression and mental rumination in mothers of children with cerebral palsy in Ilam city. Journal of Education and Health Promotion, 13(1). Scopus. https://doi.org/10.4103/jehp.jehp_1720_23
Askeland, S., Guise, V., Aase, K., & Sogstad, M. K. R. (2025). Families’ Strategies for Navigating Care for Their Child With Cerebral Palsy: A Qualitative Study. Health Expectations, 28(2). Scopus. https://doi.org/10.1111/hex.70197
Bartlett, D., Chiarello, L. A., Hjorngaard, T., & Sieck Taylor, B. (2017). Moving from parent “consultant” to parent “collaborator”: One pediatric research team’s experience. Disability and Rehabilitation, 39(21), 2228–2235. Scopus. https://doi.org/10.1080/09638288.2016.1219402
Bourke-Taylor, H., Cotter, C., & Stephan, R. (2015). Complementary, Alternative, and Mainstream Service use Among Families with Young Children with Multiple Disabilities: Family Costs to Access Choices. Physical and Occupational Therapy in Pediatrics, 35(3), 311–325. Scopus. https://doi.org/10.3109/01942638.2014.975312
Damiano, D. L., & Leonard, R. (2015). 2014 Section on Pediatrics Knowledge Translation Lecture: Clinicians and Researchers on the Same Path Toward Facilitating Family Goals for Mobility and Participation. Pediatric Physical Therapy, 27(2), 105–112. Scopus. https://doi.org/10.1097/PEP.0000000000000147
dos Santos, K. H., Marques, D., & de Souza, Â. C. (2017). Children and adolescents with cerebral palsy: Analysis of care longetudinality. Texto e Contexto Enfermagem, 26(2). Scopus. https://doi.org/10.1590/0104-07072017000530016
Fins, J. J., Knitter, J., Mukherjee, D., Conti, K., Donleavy-Hiller, B., Gerber, L. M., Hersh, J. E., Kotorac-Erlbaum, R., Milch, B., & Klein, S. M. (2024). A Descriptive Analysis of Access to Assistive Technology in Children with Acquired Brain Injury: The Right to Assistive Devices. Journal of Head Trauma Rehabilitation, 39(2), 152–159. Scopus. https://doi.org/10.1097/HTR.0000000000000876
Fontes, D. E., Ayupe, K. M. A., Moreira, R. S., de Souza Morais, R. L., de Carvalho Chagas, P. S., Longo, E., de Campos, A. C., de Toledo, A. M., Leite, H. R., & Camargos, A. C. R. (2025). Factors Associated with Performance of Activities and Participation of Brazilian Children and Adolescents with Cerebral Palsy: A Cross-Sectional Study. Developmental Neurorehabilitation, 28(1), 36–42. Scopus. https://doi.org/10.1080/17518423.2024.2438961
Fonzi, V., Sheriff, B., Dalglish, S., Anum, A., Agyei, E. D., Diggs, D., Eboigbe, L., Owusu, P. G., & Sakyi, K. S. (2021). The multifaceted care-seeking practices among caregivers of children with cerebral palsy: Perspectives from mothers and providers in Ghana. PLoS ONE, 16(10 October). Scopus. https://doi.org/10.1371/journal.pone.0258650
Freeman, M., Stewart, D., Cunningham, C. E., & Gorter, J. W. (2018). “If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood. Child: Care, Health and Development, 44(5), 689–696. Scopus. https://doi.org/10.1111/cch.12579
Gayathri, M. V., George, R., Renjith, V., Khan Nadira, R. B., Riaz, K. M., Aswin, K., Raju, A., Thomas, C., & Kurien, J. P. (2024). Challenges in Parenting Experienced by Mothers of Young Children with Cerebral Palsy: A Phenomenological Study. Journal of Psychosocial Rehabilitation and Mental Health. Scopus. https://doi.org/10.1007/s40737-024-00424-0
Hirt, E., Wright, A., Kehring, A., Wang, Y., Toraño, V., & Boles, J. (2023). “Fitting the Pieces Together”: The Experiences of Caregivers of Children With Medical Complexity. Hospital Pediatrics, 13(12), 1056–1066. Scopus. https://doi.org/10.1542/hpeds.2022-007112
Hou, Y.-J., Liu, W.-Y., Lin, Y.-H., Lien, H.-Y., Wong, A. M. K., & Chen, C.-M. (2018). A Pediatric Service-Learning Program in Physical Therapy Education. Pediatric Physical Therapy, 30(2), 149–154. Scopus. https://doi.org/10.1097/PEP.0000000000000498
Huang, S. (2023). Activating disability care: The formation of collective disability care networks in China’s COVID-19 outbreak. Disability and Society, 38(10), 1826–1847. Scopus. https://doi.org/10.1080/09687599.2022.2045188
Kassim, P. N. J., Ushiro, S., & Najid, K. M. (2015). Compensating cerebral palsy cases: Problems in court litigation and the no-fault alternative. Medicine and Law, 34(2), 335–356. Scopus.
Lee, M. H., Matthews, A. K., Park, C. G., Vincent, C., Hsieh, K., & Savage, T. A. (2020). Relationships among parenting stress, health-promoting behaviors, and health-related quality of life in Korean mothers of children with cerebral palsy. Research in Nursing and Health, 43(6), 590–601. Scopus. https://doi.org/10.1002/nur.22074
Lennon, N., Kalisperis, F., Church, C., Niiler, T., Miller, F., Biermann, I., Davey, J., Sees, J. P., & Shrader, M. W. (2024). Self-reported Health-related Quality of Life in Adolescents With Cerebral Palsy. Journal of Pediatric Orthopaedics, 44(1), E46–E50. Scopus. https://doi.org/10.1097/BPO.0000000000002519
Maciá-Andreu, M. J., Vaquero-Cristóbal, R., Meroño, L., Abenza-Cano, L., García-Roca, J. A., Cánovas-Álvarez, F. J., Díaz-Aroca, A., Capranica, L., Stanescu, M., Pereira, A., Doupona, M., Mendes, F., Figueiredo, A., Isidori, E., Sánchez-Pato, A., & Leiva-Arcas, A. (2023). Self-perception of dual career barriers and athletic identity in student-athletes with disabilities according to disability type and level of professionalization. Scientific Reports, 13(1). Scopus. https://doi.org/10.1038/s41598-023-47881-4
Maronga-Feshete, F., Pilusa, S., & Dreyer, A. (2024). ‘I’m proud of my son with CP’: Cerebral palsy caregivers’ experiences, Gauteng province. African Journal of Disability, 13, 1–8. Scopus. https://doi.org/10.4102/AJOD.V13I0.1357
Marques, J. M., & Sá, L. O. (2016). Feeding a child with cerebral palsy: Parents’ difficulties. Revista de Enfermagem Referencia, 4(11), 11–19. Scopus. https://doi.org/10.12707/RIV16041
Miller, J. M., & Graber, E. (2020). Growth Attenuation for the Child with Cerebral Palsy. Dalam Cerebral Palsy: Second Edition (hlm. 979–984). Springer International Publishing; Scopus. https://doi.org/10.1007/978-3-319-74558-9_74
Ni, Z. H., Ding, S., Wu, J. H., Zhang, S., & Liu, C. Y. (2022). Family Caregivers’ Experiences of Caring for Children With Cerebral Palsy in China: A Qualitative Descriptive Study. Inquiry (United States), 59. Scopus. https://doi.org/10.1177/00469580221121510
Nurhidayah, I., Nugraha, M. N., & Nuraeni, A. (2022). Quality of Life among Parents of Cerebral Palsy Children. Malaysian Journal of Medicine and Health Sciences, 18, 181–185. Scopus.
O’neill, T., & Wilkinson, K. M. (2020). Preliminary investigation of the perspectives of parents of children with cerebral palsy on the supports, challenges, and realities of integrating augmentative and alternative communication into everyday life. American Journal of Speech-Language Pathology, 29(1), 238–254. Scopus. https://doi.org/10.1044/2019_AJSLP-19-00103
Pastor-Bédard, N., Pituch, E., Lamata, E., Grondin, M., & Bottari, C. (2023). Parenting with a physical disability: A scoping review of assessment methods. Australian Occupational Therapy Journal, 70(2), 257–300. Scopus. https://doi.org/10.1111/1440-1630.12845
Pavlopoulou, G., Sim, E., Peter, S., Gardani, M., Beevers, V., Kassa, C., & Sideropoulos, V. (2025). ‘Who Listens to the Listener, Who Cares for the Carer?’ A Cross-Sectional Study of Social Connectedness and Sleep Experiences of Young Siblings of Neurodivergent People. Child: Care, Health and Development, 51(1). Scopus. https://doi.org/10.1111/cch.70014
Poojari, D. P., Umakanth, S., Maiya, G. A., Rao, B. K., Brien, M., & Narayan, A. (2022). Perceptions of family-centred care among caregivers of children with cerebral palsy in South India: An exploratory study. Child: Care, Health and Development, 48(2), 286–297. Scopus. https://doi.org/10.1111/cch.12929
Rabello, F., Prado, H. V., Angelo, G. L., Martins, M. B., Carneiro, N. C. R., & Borges-Oliveira, A. C. (2021). Mothers of a Child with Cerebral Palsy: Perception on the Diagnosis Moment and the Child’s General and Oral Health. Pesquisa Brasileira Em Odontopediatria e Clinica Integrada, 21. Scopus. https://doi.org/10.1590/PBOCI.2021.144
Rachamose, N., & Harvey, C. (2025). ‘It shuttered down our hearts’: The mental health of caregivers of children with cerebral palsy in rural Limpopo, South Africa. South African Journal of Psychology. Scopus. https://doi.org/10.1177/00812463251315869
Rao, A. P., Shah, H., Guruvare, S., Gore, M., Nayar, K. R., & Vijayan, B. (2021). Perspectives of caregivers on pubertal changes among young adolescent girls with cerebral palsy: A qualitative analysis. Disability, CBR and Inclusive Development, 32(3), 76–90. Scopus. https://doi.org/10.47985/dcidj.465
Shore, B. J., Allar, B. G., Miller, P. E., Matheney, T. H., Snyder, B. D., & Fragala-Pinkham, M. (2019). Measuring the Reliability and Construct Validity of the Pediatric Evaluation of Disability Inventory–Computer Adaptive Test (PEDI-CAT) in Children With Cerebral Palsy. Archives of Physical Medicine and Rehabilitation, 100(1), 45–51. Scopus. https://doi.org/10.1016/j.apmr.2018.07.427
Somerville, K. (2022). Boxed in: The Art of Assemblage. Missouri Review, 45(1), 149–165. Scopus. https://doi.org/10.1353/mis.2022.0006
Toovey, R., Willoughby, K. L., Hodgson, J. M., Graham, H. K., & Reddihough, D. S. (2020). More than an X-ray: Experiences and perspectives of parents of children with cerebral palsy when engaging in hip surveillance. Journal of Paediatrics and Child Health, 56(1), 130–135. Scopus. https://doi.org/10.1111/jpc.14537
Copyright (c) 2025 Nurmelisa Anwar, Citrawanti Oktavia
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.
