Family and intellectual disabilities: needs perceived in the family context
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Intellectual Disability impacts all the contexts involved in the lives of the people who present it and,
especially, in the family context. The needs that families perceive concerning disability must be duly addressed to achieve an adequate quality of life.
The following is a theoretical review of the main works in the last decade, focused on knowing the perceived needs in the family context of people
with intellectual disabilities. First, an estimation of the volume and type of publications has been made
in the subject area of study; next, we have tried to determine and group the studies according to the type of methodology used; and finally the studies found have been identified and cataloged according to the thematic areas. 27 articles have been found referring to the subject, all of them empirical analyzing the needs of families. Interest in this topic is appreciated in recent years, highlighting the need
for instruments to assess the needs perceived by families as well as the need for continuous support and information from professionals expressed by family members of people with disabilities.
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References
Aguado, A.L., Alcedo, M.A. y Fontanil, Y. (2012). Proceso de envejecimiento en personas con discapacidad intelectual de Castilla y León: calidad de vida y necesidades percibidas. En M.A. Verdugo, R. Canal, M. Badía y A.L. Aguado (coors.). Aplicación del paradigma de calidad de vida a la intervención con personas con discapacidad desde una perspectiva integral (pp. 95-121). Salamanca: Colección Investigación, Publicaciones del INICO.
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 Health Psychology 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), 31-40. 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:
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.