The Role of Families in Intervention Programs Promoting Independent Living for Youth with Disabilities: A Qualitative Study
Abstract For people with intellectual disabilities and their families, the transition to independent living is a major challenge. The aim of this article is to characterize the role of families in programs to promote Independent Living for young people with disabilities. This study corresponds to the second stage of an evaluative research, the design was retrospective of phenomenological character, and the inductive method Thematic Analysis was used to analyze the information collected from the semi-structured individual interviews and focus groups. Among the main results is the motivation of the family as a fundamental pillar to persevere in the process; it also highlights the path of acceptance of the child’s disability, leaving behind the infantilizing look, which is linked to the importance of promoting their autonomy. Also highlighted as a result is the resignification of the role of the caregivers and the creation of a support network. Based on these results, we reflect on the relevance of empowering youth people with disabilities, the necessary conditions to extend the changes promoted by the intervention to other significant environments, and the overload permanently experienced by mothers-caregivers in their role.
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BRAUN, V. y CLARKE, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
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DIMITRIADOU, I. y LEFKOTHEA, K. (2017). The role of support systems for the independence of individuals with intellectual disabilities. The International Journal of Pedagogy and Curriculum, 24(3), 39-48. https://doi.org/10.18848/2327-7963/CGP/v24i03/39-48
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PAVLIDOU, E. y KARTASIDOU, L. (2017). The role of the family as a support system: The views of individuals with an intellectual disability in Greece. The International Journal of Learner Diversity and Identities, 24(3), 1-9. https://doi.org/10.18848/2327-0128/CGP/v24i03/1-9
REA-AMAYA, A. C., ACLE TOMASINI, G., AMPUDIA RUEDA, A. y GARCÍA MÉNDEZ, M. (2014). Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar. Acta Colombiana de Psicología, 17(1), 91-103. https://doi.org/10.14718/ACP.2014.17.1.10
ROLLAND, J. (2000). Familias, enfermedad y discapacidad. Una propuesta desde la mirada sistémica. Gedisa.
SÁNCHEZ, P. (2006) Discapacidad, familia y logro escolar. Revista Iberoamericana de Educación, 40(2), 45-55. https://doi.org/10.35362/rie4022524
SKINNER, D. y WEISNER, T. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 302-312. https://doi.org/10.1002/mrdd.20170
VALLS GABERNET, M. J., FULLANA NOELL, J., PALLISERA DÍAZ, M. y VILÀ SUÑÉ, M. (2020). Los procesos de vida independiente de las personas con discapacidad intelectual: la voz de las familias. Educación y Futuro Digital, 20, 27-43.
VANEGAS, S. B. y ABDELRAHIM, R. (2016). Characterizing the systems of support for families of children with disabilities: A review of the literature. Journal of Family Social Work, 19(4), 286-327. https://doi.org/10.1080/10522158.2016.1218399
BOSTRÖM, P. K. y BROBERG, M. (2014). Openness and avoidance--a longitudinal study of fathers of children with intellectual disability. Journal of Intellect Disability Research, 58(9), 810-821. https://doi.org/10.1111/jir.12093
BRAUN, V. y CLARKE, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
CONTINO, A. M. y MICHELETTI, A. (2019). Niñez eterna. La infantilización en la discapacidad intelectual. F@ro: Revista Teórica del Departamento de Ciencias de la Comunicación, 1(29), 5. https://www.revistafaro.cl/index.php/Faro/article/view/565
DEMPSEY, I. y KEEN, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28(1), 42-52. https://doi.org/10.1177/0271121408316699
DIMITRIADOU, I. (2018). Independent living of individuals with intellectual disability: A combined study of the opinions of parents, educational staff, and individuals with intellectual disability in Greece. International Journal of Developmental Disabilities, 66(2), 153-159. https://doi.org/10.1080/20473869.2018.1541560
DIMITRIADOU, I. y LEFKOTHEA, K. (2017). The role of support systems for the independence of individuals with intellectual disabilities. The International Journal of Pedagogy and Curriculum, 24(3), 39-48. https://doi.org/10.18848/2327-7963/CGP/v24i03/39-48
DOWLING, M. y DOLAN, L. (2001). Families with children with disabilities - inequalities and the social model. Disability and Society, 16(1), 21-35. https://doi.org/10.1080/713662027
GREEN, S. (2007). We’re tired, not sad: Benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64(1), 150-163. https://doi.org/10.1016/j.socscimed.2006.08.025
GUEST, G., MACQUEEN, K. M. y NAMEY, E. E. (2011). Applied thematic analysis. Sage publications.
HORMAZÁBAL FERNÁNDEZ, D. K. y VALENZUELA OSORIO, J. C. (2015). Ideas y creencias de padres de jóvenes con discapacidad intelectual que asisten a escuelas especiales de la Comuna de Concepción y Talcahuano, frente a las relaciones de pareja que puedan llegar a establecer sus hijos. [Seminario de Licenciatura en Educación, Universidad de Concepción]. https://repositorio.udec.cl/jspui/handle/11594/3038
JORDÁN DE URRÍES, B. y VERDUGO, M. Á. (2013). Transición a la vida adulta. En M. Á. VERDUGO y R. SCHALOCK (Coords.), Discapacidad e inclusión. Amarú.
KANIAMATTAM, M. y OXLEY, J. (2022). Unpacking the varied roles of mothers of children with developmental disabilities in South India. Disability and Society, 37(1), 38-62. https://doi.org/10.1080/09687599.2021.1918540
KEEN, D. (2007). Parents, families, and partnerships: Issues and considerations. International Journal of Disability, Development and Education, 54(3), 339-349. https://doi.org/10.1080/10349120701488855
Organización de Naciones Unidas (ONU). (2006). Convención sobre los Derechos de las Personas con Discapacidad.
Organización de Naciones Unidas (ONU) (2017). Observación general n.º 5 (2017) sobre el derecho a vivir de forma independiente y a ser incluido en la comunidad. En Convención sobre los Derechos de las Personas con Discapacidad.
PALLISERA, M., FULLANA, P., PUYALTÓ, C., VILÁ, M. y DÍAZ, G. (2017). Apoyando la participación real de las personas con discapacidad intelectual: Una experiencia de investigación inclusiva sobre vida independiente. Revista Española de Discapacidad, 5(I), 7-24. https://doi.org/10.5569/2340-5104.05.01.01
PAPADIMITRIOU, C. (2008). The ‘I’of the beholder: Phenomenological seeing in disability research. En Ethics, Disability and Sports, 2(2), 216-233. Routledge. https://doi.org/10.1080/17511320802223733
PAVLIDOU, E. y KARTASIDOU, L. (2017). The role of the family as a support system: The views of individuals with an intellectual disability in Greece. The International Journal of Learner Diversity and Identities, 24(3), 1-9. https://doi.org/10.18848/2327-0128/CGP/v24i03/1-9
REA-AMAYA, A. C., ACLE TOMASINI, G., AMPUDIA RUEDA, A. y GARCÍA MÉNDEZ, M. (2014). Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar. Acta Colombiana de Psicología, 17(1), 91-103. https://doi.org/10.14718/ACP.2014.17.1.10
ROLLAND, J. (2000). Familias, enfermedad y discapacidad. Una propuesta desde la mirada sistémica. Gedisa.
SÁNCHEZ, P. (2006) Discapacidad, familia y logro escolar. Revista Iberoamericana de Educación, 40(2), 45-55. https://doi.org/10.35362/rie4022524
SKINNER, D. y WEISNER, T. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 302-312. https://doi.org/10.1002/mrdd.20170
VALLS GABERNET, M. J., FULLANA NOELL, J., PALLISERA DÍAZ, M. y VILÀ SUÑÉ, M. (2020). Los procesos de vida independiente de las personas con discapacidad intelectual: la voz de las familias. Educación y Futuro Digital, 20, 27-43.
VANEGAS, S. B. y ABDELRAHIM, R. (2016). Characterizing the systems of support for families of children with disabilities: A review of the literature. Journal of Family Social Work, 19(4), 286-327. https://doi.org/10.1080/10522158.2016.1218399
Quiroz Saavedra, R., Varas Garcés, P., & Riesco, X. (2024). The Role of Families in Intervention Programs Promoting Independent Living for Youth with Disabilities: A Qualitative Study. Siglo Cero, 55(2), 25–42. https://doi.org/10.14201/scero.31797
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