Familia y discapacidad intelectualnecesidades percibidas en el contexto familiar

  1. Patricia Solís García
  2. Rocío Lago-Urbano
Revista:
Familia: Revista de ciencias y orientación familiar

ISSN: 1130-8893

Año de publicación: 2020

Número: 58

Páginas: 65-80

Tipo: Artículo

Otras publicaciones en: Familia: Revista de ciencias y orientación familiar

Resumen

La Discapacidad Intelectual impacta en todos los contextos implicados en la vida de las personas que la presentan y, muy especialmente, en el contexto familiar. Las necesidades que perciben las familias en relación con la discapacidad tienen que ser debidamente atendidas en pro de la consecución de una adecuada calidad de vida. A continuación, se presenta una revisión teórica de los principales trabajos en la última década, centrados en conocer las necesidades percibidas en el contexto familiar de personas con discapacidad intelectual. En primer lugar, se ha realizado una estimación del volumen y tipo de publicaciones en el área temática de estudio; a continuación, se ha tratado de determinar y agrupar los estudios en función del tipo de metodología utilizada; y finalmente se han identificado y catalogado los estudios encontrados en función de las áreas temáticas. Se han encontrado 27 artículos referentes a la temática, todos ellos empíricos, analizando las necesidades de las familias. Se aprecia el interés por este tema en los últimos años, destacando la necesidad de instrumentos para evaluar las necesidades percibidas por las familias, así como la necesidad de apoyo continuo y de información por parte de los profesionales expresada por los familiares de personas con discapacidad

Referencias bibliográficas

  • Alcedo, M.A., Fontanil, Y., Solís, P., Pedrosa, I. y Aguado, A.L. (2017).People with intelectual disability who are ageing: perceived needs assesment. International Journal of Clinical and HealthPsychology 17, 38-45.
  • Asociación Americana de Discapacidades Intelectuales y del Desarrollo (2011). Discapacidad intelectual. Definición, clasificación sistemas de apoyo. Madrid: Alianza Editorial.
  • Balboni, G., Coscarelli, A., Giuntia, G. y Schalock, R.L. (2013). The assessment of the quality of life of adults with intellectual disability: The use of self-report and report of others assessment strategies. Research in Developmental Disabilities, 34, 4248–4254. doi:10.1016/j.ridd.2013.09.009
  • Balcells-Balcells, A., Giné, C., Guàrdia-Olmos, J., Summers, J.A., Mas, J.M. (2019). Impact of supports and partnership on family quality of life. Research in Developmental Disabilities, 85, 50-60. doi: 10.1016/j.ridd.2018.10.006
  • Balcells-Balcells, A., Giné, C., Guàrdia-Olmos, J., Summers, J.A. (2016). Proposal of indexes to evaluate Family Quality of Life, Partnership, and Family support needs. Revista Iberoamericana de Psicología y Salud, 7 (1), 3140.Doi:10.1016/j.rips.2015.10.005
  • Bitencourt, D. (2018). Evaluación de las necesidades de apoyo de las familias de personas con discapacidad intelectual y/o del desarrollo en Brasil (Tesis Doctoral). Universidad de Barcelona: España.
  • Brown, H. K., Ouellette-Kuntz, H., Hunter, D., Kelley, E. y Cobigo, V. (2012). Unmet needs of families of school-aged children with an autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 25(6), 497-508. doi: 10.1111/j.1468-3148.2012.00692.x
  • Bruns, D. y Foerster, K. (2011). “We’ve been through it all together”: Supports for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55(4), 361-369. doi: 10.1111/j.1365-2788.2010.01381.x
  • Cavkaytar, A., Ceyhan, E., Adiguzel, O.C., Uysal, H. y Garan, O. (2012). Investigating education and support needs of families who have children with intellectual disabilities. Turkish Online Journal of Qualitative Inquiry, 3(4), 79-99. Retrieved from http://www.espaciotv.es:2048/referer/secretcode/docview/1312422633?account id=142712.
  • Chiu, C., Turnbull, A.P. y Summers, J.A. (2013). What families need: Validation of the family needs assessment for taiwanese families of children with intellectual disability and developmental delay. Research and Practice for Persons with Severe Disabilities, 38(4), 247-258. Retrieved from http://www.espaciotv.es:2048/referer/secretcode/docview/1697492695?accountid=142712.
  • Claes, C., Van Hove, G., Van Loon, J., Vandevelde, S. y Schalock, R.L. (2010). Quality of life measurement in the field of intellectual disabilities: Eight principles for assessing quality of life-related personal outcomes. Social Indicators Research, 98, 61-72.
  • Correia, R.A., Seabra-Santos, M.J., Campos, P. y Brown, I. (2017). Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 59-67.
  • Coyle, C., Putman, M., Kramer, J. y Mutchler J. (2016). The role of aging and disability resource centers in serving adults aging with intellectual disabilities and their families: findings from seven states. Journal of Aging and Social Policy, 28(1), 1-14.
  • Crnic, K. A., Gaze, C., y Hoffman, C. (2005). Cumulative parenting stress across the preschool period: Relations to maternal parenting and child behaviour at age 5. Infant and Child Development, 14 (2), 117-132. doi:http://dx.doi.org/10.1002/icd.384
  • Cruz, M., y Jiménez, M. (2016). Envejecimiento y discapacidad intelectual. Aproximación a las necesidades de las personas adultas y mayores con discapacidad intelectual y sus familias. IJERI: International Journal of Educational Research and Innovation, 0(7),76-90.
  • Cummins, R.A. (2005). Moving from the quality concept to a theory. Journal of Intellectual Disability Research, 49(10), 699-706. de Azevedo, T.L., Cia, F. y Spinazola, C.C. (2019) Correlation between marital relationship, family routine, social support, necessities and quality of life of parents and mothers of children with disability. Revista Brasileira de Educacao Especial, 25 (2), 203-215.doi: 10.1590/s1413-65382519000200002
  • de Verdier, K., Fernell, E. y Ek, U. (2019). Blindness and Autism: Parents’ Perspectives on Diagnostic Challenges, Support Needs and Support Provision. Journal of Autism and Developmental Disorders, doi: 10.1007/s10803-019-03944-y
  • Derguy, C., Michel, G., M’bailara, K., Roux, S. y Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual & Developmental Disability, 40(2), 156-166. doi: 10.3109/13668250.2015.1023707
  • Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L. y Pellicano, E. (2018). ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum. Autism: The International Journal of Research and Practice, 22(5), 571-584. doi: 10.1177/1362361316687989
  • Gerstein, E., Crnic, K., Blacher, J., y Baker, L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53 (12), 981-997. doi: 10.1111/j.1365-2788.2009.01220.x
  • Gil-Llario, M. D., Morell-Mengual, V., Díaz Rodríguez, I., GiménezGarcía, C., & Ruiz-Palomino, E. (2016). Calidad de vida de los discapacitados intelectuales valorada por ellos mismos y los profesionales: variables implicadas. International Journal of Developmental and Educational Psychology, 1(1).
  • Harkins, E.A. (2014). Let them be the unique person that they are: Parent perceptions of the social emotional needs of students with intellectual disabilities during the transition to high school. Available from ERIC. (1720064219; ED557129). Retrieved from http://www.espaciotv.es:2048/referer/secretcode/docview/1720064219?accountid=142712
  • Hartley, S.L. y Schultz, H.M. (2015). Support needs of fathers and mothers of children and adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(6), 1636-1648.doi: 10.1007/s10803-014-2318-0
  • Hodgetts, S., Zwaigenbaum, L., Nicholas, D. (2015). Profile and predictors of service needs for families of children with autism spectrum disorders. Autism: The International Journal of Research and Practice, 19 (6), 673-683. doi: 10.1177/1362361314543
  • Hole, R.D., Stainton, T. y Wilson, L. (2013). Ageing adults with intellectual disabilities: self-advocates’ and family members’ perspectives about the future. Australian Social Work, 66, 571-589. doi:10.1080/0312407X.2012.689307
  • Hu, X.I. (2011). Family needs of chinese families with children with intellectual and developmental disabilities: A qualitative inquiry. Available from ERIC. (1037910040; ED533681). Retrieved from http://www.espaciotv.es:2048/referer/secretcode/docview/1037910040?accountid=142712
  • Huus, K., Olsson, L.M., Elgmark Andersson, E., Granlund, M.,Augustine, L. (2017). Perceived needs among parents of children with a mild intellectual disability in Sweden. Scandinavian Journal of Disability Research, 19 (4), 307-317. doi: 10.1080/15017419.2016.1167773
  • Ibañez, A., Verdugo, M.A. y Arias, B. (2009). Evaluar y planificar apoyos: una reflexión desde el contexto español. En M.A. Verdugo, T. Nieto, B. J. de Urriés y M. Crespo (coords.), Mejorando resultados personales para una vida de calidad (pp. 709-717). Salamanca: Amarú Ediciones, Colección psicología.
  • IMSERSO (2016). Informe de la Base Estatal de datos de personas con discapacidad. Subdirección General de Planificación, Ordenación y Evaluación: Madrid. http://imserso.es/InterPresent2/ groups/imserso/documents/binario/bdepcd_2015.pdf
  • Kleefman, M., Reijneveld, S.A. y Jansen, D.E.M.C. (2015). Prevalence and determinants of need for formal parenting support among parents raising a child with a borderline to mild intellectual disability. Journal of Intellectual & Developmental Disability, 40(1), 49-56. doi: 10.3109/13668250.2014.956659
  • Lee, C.E., Burke, M.M., Arnold, C.K., Owen, A. (2019). Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy. Journal of Applied Research in Intellectual Disabilities, 32 (1), 194-205. doi: 10.1111/jar.12521
  • Martin, L., Ouellette-Kuntz, H., McKenzie, K. (2017). The Power of Population Health Data on Aging and Intellectual and Developmental Disabilities: Reactions of Knowledge Users. Journal of Policy and Practice in Intellectual Disabilities, 14: 268–278. Moher, D., Liberati, A., Tetzlaff, J., Altman, D.G. y The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and MetaAnalyses: The PRISMA Statement. PLoS Medicine, 6:e1000097. doi:10.1371/journal.pmed1000097.
  • Navas, P., Uhlmann, S. y Berastegui, A. (2014). Envejecimiento activo y discapacidad intelectual. Madrid: Ministerio de Educación, Cultura y Deporte, Subdirección General de Documentación y Publicaciones. Organización Mundial de la Salud (OMS) (2011). Informe mundial sobre la discapacidad. Recuperado de http://www.who.int/disabilities/world_report/2011/es/
  • Ridding, A. y Williams, J. (2019). Being a dad to a child with Down’s syndrome: Overcoming the challenges to adjustment. Journal of Applied Research in Intellectual Disabilities, 32 (3), 678-690. doi:10.1111/jar.12563
  • Sexton, E., O’Donovan, M.A., Mulryan, N., McCallion, P. y McCarron, M. (2016). Whose quality of life? A comparison of measures of self-determination and emotional wellbeing in research with older adults with and without intellectual disability. Journal of Intellectual & Developmental Disability, 41 (4), 324-337.
  • Schmidt, S., Power, M., Green, A., Lucas-Carrasco, R., Eser, E., Dragomirecka, E. y Fleck, M. (2010). Self and proxy rating of quality of life in adults with intellectual disabilities: Results from the DISQOL study. Research in developmental disabilities, 31(5), 1015- 1026.
  • Schofield, D.A. (2012). Parents’ perceptions of the supports received for their children’s problem behaviors. Available from ERIC. (1651829795; ED546279). Retrieved from http://www.espaciotv.es:2048/referer/secretcode/docview/1651829795?account id=142712
  • Shave, K. y Lashewicz, B. (2016). Support needs of fathers of children with ASD: Individual, family, community and ideological influences. Journal of Applied Research in Intellectual Disabilities, 29(6), 495-507. doi: 10.1111/jar.12204
  • Shin, H., Park, Y., Ryu, H., y Seomun, G. (2008). Maternal sensitivity: A concept analysis. Journal of Advanced Nursing, 64 (3), 304-314. doi:10.1111/j.1365-2648.2008.04814.x
  • Shivers, C.M., Sonnier-Netto, L., Lee, G.K. (2019). Needs and Experiences of Family Caregivers of Individuals With Autism Spectrum Disorders Across the Lifespan. Journal of Policy and Practice in Intellectual Disabilities, 16 (1), 21-29.
  • Simões, C., y Santos, S. (2016). The Impact of Employment on Quality of Life of Adults with Intellectual Disability. Revista Lusófona de Educação, 34, 181-197.
  • Tilahun, D., Hanlon, C., Fekadu, A., Tekola, B., Baheretibeb, Y., Hoekstra, R.A. (2016). Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a lowincome African country: A cross-sectional facility-based survey.
  • BMC Health Services Research, 16 (1), art. no. 1383. Doi: 10.1186/s12913-016-1383-9
  • Verdugo, M.Á., Gómez, L.E. y Arias, B. (2007). La Escala Integral de Calidad de Vida. Desarrollo y estudio preliminar de sus propiedades psicométricas. Siglo cero, 38(224), 37-56.
  • Verdugo, M.A., Gómez, L.E., Arias, B., Navas, P. y Schalock, R.L. (2014). Measuring quality of life in people with intellectual and multiple disabilities: Validation of the San Martín Scale. Research in Developmental Disabilities, 35, 75-86.
  • Verma, R. K. y Kishore, M. T. (2009). Needs of indian parents having children with intellectual disability. International Journal of Rehabilitation Research, 32(1), 71-76. doi: 10.1097/MRR.0b013e32830d36b6
  • Vilaseca, R., Gràcia, M., Beltran, F.S., Dalmau, M., Alomar, E., AdamAlcocer, A.L. y Simó-Pinatella, D. (2017), Needs and Supports of People with Intellectual Disability and Their Families in Catalonia. Journal of Applied Research in Intellectual Disability, 30: 33-46.
  • Wang, P. y Michaels, C.A. (2009). Chinese families of children with severe disabilities: Family needs and available support. Research and Practice for Persons with Severe Disabilities (RPSD), 34(2), 21-32. Retrieved from http://www.espaciotv.es:2048/referer/secretcode/docview/742865497?accountid=142712
  • White-Koning, M., Arnaud, C., Dickinson, H.O., Thyen, U., Beckung, E.,Fauconnier, J. y Colver, A. (2007). Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. Pediatrics, 120(4), e804–e814.
  • Zimmerman, F. y Enderman, M. (2008). Self-proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities. Epilepsy and Behavior, 13, 202-211.