Meanings of caring for children with cerebral palsy
Article Sidebar
Main Article Content
Abstract
(analytical)
There is insufficient evidence regarding meanings developed by caregivers of children with Cerebral Palsy in Colombia. The methodology involved adopting a hermeneutic approach, which was combined with the grounded theory method. A total of 13 semi-structured interviews were conducted with adult caregivers of children with cerebral palsy. Following an analysis of the results, four categories emerged: unconditional love; caring as a woman; experiencing grief; and the endless fight for their child's rights. It was concluded that the caregivers of children with Cerebral Palsy have developed determined coping skills. This is because they are willing to give up their own lives, sacrifice their
personal and social relationships, experience constant grief and learn new ways of caring and transforming their homes in their struggle to provide dignified care for their children. Unconditional love
allows these caregivers to recognize themselves as unique caring women.
Keywords: Cerebral Palsy; child rearing; child development; children with disabilities; caregiver burden; child care; empathy; caregivers.
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
You are free to:
- Share - copy and redistribute the material in any medium or format
- Adapt - remix, transform, and build upon the material
- The licensor cannot revoke these freedoms as long as you follow the license terms.
Under the following terms:
-
Attribution - You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
-
NonCommercial - You may not use the material for commercial purposes.
-
ShareAlike - If you remix, transform, or build upon the material, you must distribute your contributions under the same license as the original.
- No additional restrictions - You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
How to Cite
References
Almasri, N., Palisano, R., Dunst, C., Chiarello, L. A., O'Neil, M., & Polansky, M. (2012). Profiles of family needs of children and youth with cerebral palsy. Child: Care, Health and Development, 38(6), 798-806. https://doi.org/10.1111/j.1365-2214.2011.01331.x
Ãlvarez, J. A., Ramírez, L. M., & Giraldo, C. (2019). Maternar y paternar: transformando prácticas de autoridad, comunicación y cercanía vinculante. Revista Latinoamericana de Estudios de Familia, 11(1), 48-65. https://doi.org/10.17151/rlef.2019.11.1.4
Barron-Garza, F., Coronado-Garza, M., Gutiérrez-Ramírez, S., Ramos-Rincón, J.-M., Guzmán-de la Garza, F., Lozano-Morantes, A., Flores-Rodríguez, A., Nieto-Sanjuanero, A., Ãlvarez-Villalobos, N., Flores-Villarreal, M., & Covarrubias-Contreras, L. (2023). Incidence of cerebral palsy, risk factors, and neuroimaging in Northeast Mexico. Pediatric Neurology, 143, 50-58. https://doi.org/k7pm
Basaure, M. (2011). Reificación y crítica de las patologías sociales en el marco del proyecto de teoría crítica de Axel Honneth. Enrahonar, 46, 75-91. https://doi.org/k7pn
Batthyány, K. (2021). Políticas del cuidado. Consejo Latinoamericano de Ciencias Sociales; Casa Abierta al Tiempo.
Blumer, H. (1986). Symbolic Interactionism: Perspective and method. University of California Press.
Collazos, J., Lermen, D., Moreno, M., García, S., & González, C. I. (2008). Salud pública y discapacidad. Universidad Nacional de Colombia.
Committee on Bioethics and Committee on Hospital Care. (2000). Palliative care for children. Pediatrics, 106(2), 351-357. https://doi.org/10.1542/peds.106.2.351
Cook, J. E., Tovin, M. M., & Kenyon, L. K. (2022). Understanding the lived experience of caring for a child with severe cerebral palsy: A critical step toward psychologically informed family-centered dare. Physical Therapy & Rehabilitation Journal, 102(4), pzab294. https://doi.org/10.1093/ptj/pzab294
D'Alessandro, M. (2018). Economía feminista: las mujeres, el trabajo y el amor. Penguin Random House.
Dambi, J. M., Jelsma, J., & Mlambo, T. (2015). Caring for a child with cerebral palsy: The experience of Zimbabwean mothers. African Journal of Disability, 4(1), a168. https://doi.org/10.4102/ajod.v4i1.168
de Diego-Cordero, R., Fernández-Fernández, M., & Vega-Escaño, J. (2020). Cultura y espiritualidad en la vivencia del cáncer de mama y la mastectomía. Cultura de los Cuidados, 24(57), 9-26. https://doi.org/10.14198/cuid.2020.57.02
de la Cuesta-Benjumea, C. (2005). La artesanía del cuidado: cuidar en la casa a un familiar con demencia avanzada. Enfermería Clínica, 15(6), 335-342. https://doi.org/b7xbtw
Dizy, D. (2010). Dependencia y familia: una perspectiva socio-económica. Ministerio de Sanidad y Política Social. Feito, L. (2007). Vulnerabilidad. Anales del Sistema Sanitario de Navarra, 30(suple. 3), 7-22. https://doi.org/10.23938/ASSN.0199
Fernández-Alcántara, M., García-Caro, M., Berrocal-Castellano, M., Benítez, A., Robles Vizcaíno, C., & Laynez-Rubio, C. (2013). Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo. Anales del Sistema Sanitario de Navarra, 36(1), 9-20. https://doi.org/10.4321/S1137-66272013000100002
Feudtner, C. (2007). Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision-making. Pediatric Clinics of North America, 54(5), 583-607. https://doi.org/10.1016/j.pcl.2007.07.008
Fraser, N. (2020). Los talleres ocultos del capital: un mapa para la izquierda. Traficantes de Sueños.
Hagerman, T. K., McKernan, G., Carle, A. C., Yu, J. A., Stover, A. D., & Houtrow, A. J. (2022). The mental and physical health of mothers of children with special health care needs in the United States. Maternal and Child Health Journal, 26(3), 500-510. https://doi.org/10.1007/s10995-021-03359-1
Hernández, M. I. (2015). El concepto de discapacidad: de la enfermedad al enfoque de derechos. Revista CES Derecho, 6(2), 46-59.
Hojat, M. (2007). Empathy in patient care: Antecedents, development, measurement, and out-comes. Springer. Honneth, A. (2006). El reconocimiento como ideología. Isegoría, (35), 129-150. https://doi.org/10.3989/isegoria.2006.i35.33
Kübler-Ross, E., Wessler, S., & Avioli, L. V. (1972). On death and dying. JAMA, 221(2), 174-179. https://doi.org/10.1001/jama.1972.03200150040010
Luna, A., Pérez, E., Domínguez, M., & García, M. (2017). Significado psicológico del duelo a partir de redes semánticas naturales. Vertientes. Revista Especializada en Ciencias de la Salud, 20(1), 27-34.
Martino, R. (2007). El proceso de morir en el niño y en el adolescente. Pediatría Integral, 11(10), 926-934.
McIntyre, S., Goldsmith, S., Webb, A., Ehlinger, V., Hollung, S. J., McConnell, K., Arnaud, C., Smithers-Sheedy, H., Oskoui, M., Khandaker, G., & Himmelmann, K. (2022). Global prevalence of cerebral palsy: A systematic analysis. Developmental Medicine & Child Neurology, 64(12), 1494-1506. https://doi.org/10.1111/dmcn.15346
Molina, Y., Casanova, M. F., Valladares, A. M., & D'Escoubet, M. (2019). Resiliencia en madres de niños/as con parálisis cerebral, Cienfuegos, 2018. Medisur, 17(6), 806-814.
Mora, C., & Patiño, M. (2018). Religión y discapacidad: tramas que construyen la calidad de vida de los creyentes. Psicología y Salud, 29(1), 125-137. https://doi.org/k7pp
Núñez, B. (2003). La familia con un hijo con discapacidad: sus con%ictos vinculares. Archivos Argentinos de Pediatría, 101(2), 133-142.
Oskoui, M., Coutinho, F., Dykeman, J., Jetté, N., & Pringsheim, T. (2013). An update on the prevalence of cerebral palsy: A systematic review and meta-analysis. Developmental Medicine & Child Neurology, 55(6), 509-519. https://doi.org/10.1111/dmcn.12080
Oviedo-Cáceres, M., Arias-Valencia, S.-A., & Hernández-Quirama, A. (2019). Configuración histórica de la discapacidad visual y sus implicaciones para la salud pública. Revista de la Universidad Industrial de Santander. Salud, 51(3), 252-261. https://doi.org/10.18273/revsal.v51n3-2019008
Pérez, A. (2016). Impacto de la discapacidad en el núcleo familiar. [Tesis de pregrado, Universidad Pública de Navarra]. Academica-e. https://hdl.handle.net/2454/23449
Pérez, L., & Mendiondo, P. (2007). La parálisis cerebral infantil: su impacto sobre el ajuste emocional y desempeño social de la madre. Archivo Médico de Camagüey, 11(5), 1-9.
Ribeiro, M. F., Sousa, A. L., Vandenberghe, L., & Porto, C. C. (2014). Parental stress in mothers of children and adolescents with cerebral palsy. Revista Latino-Americana de Enfermagem, 22(3), 440-447. https://doi.org/10.1590/0104-1169.3409.2435
Ruiz, M. (2014). La comunicación en la relación de ayuda al cuidador principal. Revista Española de Comunicación en Salud, 5(1), 56-63.
Sadowska, M., Sarecka-Hujar, B., & Kopyta, I. (2020). Cerebral palsy: Current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatric Disease and Treatment, 16, 1505-1518. https://doi.org/gk88
Sen, E., & Yurtsever, S. (2007). Difficulties experienced by families with disabled children. Journal for Specialists in Pediatric Nursing, 12(4), 238-252. https://doi.org/dpf5md
Sheu, J., Cohen, D., Sousa, T., & Pham, K. (2022). Cerebral palsy: Current concepts and practices in musculoskeletal care. Pediatrics in Review, 43(10), 572-581. https://doi.org/10.1542/pir.2022-005657
Smith, M. & Blamires, J. (2022). Mothers' experience of having a child with cerebral palsy: A systematic review. Journal of Pediatric Nursing, 64, 64-73. https://doi.org/k7pr
Sonune, S. P., Gaur, A. K., & Shenoy, A. (2021). Prevalence of depression and quality of life in primary caregiver of children with cerebral palsy. Journal of Family Medicine and Primary Care, 10(11), 4205-4211. https://doi.org/10.4103/jfmpc.jfmpc_70_21
Strauss, A., & Corbin J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Sage.
Tseng, M.-H., Chen, K.-L., Shieh, J.-Y., Lu, L., Huang, C.-Y., & Simeonsson, R. J. (2016). Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy. Disability and Rehabilitation, 38(24), 2374-2382. https://doi.org/10.3109/09638288.2015.1129451
Velásquez, S., & Arroyave, O. (2021). Relación entre el cuidado y la teoría del reconocimiento. Temperamentvm, 17, e13143.
Wang, J., Yue, L., Chen, Z., Bai, B., & Chen, C. (2022). Effect of hospital-family rehabilitation intervention on walking function and lower limb surface electromyography in children with cerebral palsy. Computational and Mathematical Methods in Medicine, 2022, 7034670. https://doi.org/10.1155/2022/7034670
Whittingham, K., Wee, D., Sanders, M., & Boyd, R. (2011). Responding to the challenges of parenting a child with cerebral palsy: A focus group. Disability and Rehabilitation, 33(17-18), 1557-1567. https://doi.org/10.3109/09638288.2010.535090
Yoffe, L. (2012). Efectos positivos de las prácticas religiosas/espirituales en el duelo. Avances en Psicología, 20(1), 9-30. https://doi.org/10.33539/avpsicol.2012.v20n1.1940