La percepción de las necesidades de las familias de niños y niñas con trastorno del espectro autistaClaves para el fomento de la parentalidad positiva desde ámbito educativo

  1. Padilla Curra, Sonia 1
  2. Byrne, Sonia 2
  3. Alvarez Lorenzo, Míriam 2
  1. 1 Asociación Hestia
  2. 2 Universidad de La Laguna
    info

    Universidad de La Laguna

    San Cristobal de La Laguna, España

    ROR https://ror.org/01r9z8p25

Journal:
Revista de investigación en educación

ISSN: 1697-5200 2172-3427

Year of publication: 2023

Volume: 21

Issue: 1

Pages: 62-79

Type: Article

DOI: 10.35869/REINED.V21I1.4532 DIALNET GOOGLE SCHOLAR lock_openDialnet editor

More publications in: Revista de investigación en educación

Sustainable development goals

Abstract

El objetivo de esta investigación fue analizar la percepción que tienen las familias con hijos e hijas con trastorno del espectro autista (TEA) sobre la importancia y satisfacción de sus necesidades y la relación de la satisfacción de dichas necesidades con el sentido de pertenencia al centro educativo y con la percepción de discriminación en el centro. Se contó con una muestra total de 55 madres y padres con hijos e hijas con TEA entre 4 y 12 años de la Comunidad Autónoma de Canarias. Los resultados mostraron que las cinco necesidades importantes satisfechas con menos frecuencia fueron: que les respondan honestamente a sus preguntas, ayuda económica, que les digan si están tomando buenas decisiones acerca de su hijo/a, que el colegio de su hijo/a establezca un plan de educación especializado para él/ella, información sobre programas especiales y servicios disponibles para su hijo/a y su familia. El análisis de conglomerados mostró dos tipologías de familias atendiendo a la satisfacción de las necesidades. El sentido de pertenencia al centro y la percepción de discriminación en el centro educativo caracterizaron a los dos grupos, mostrando mejores resultados el conglomerado con mayor nivel de satisfacción de las necesidades. Los hallazgos ponen de relieve la importancia de la percepción que tienen las familias de sus necesidades y pueden ayudar a identificar objetivos y metas en la intervención para la promoción del bienestar de los niños y las niñas con TEA y de sus familias.

Bibliographic References

  • Aguiar, G., Demothenes, Y. y Campos, I. (2020). La participación familiar en la inclusión socioeducativa de los educandos con necesidades educativas especiales. Mendive. Revista de Educación, 18(1), 120-133. http://mendive.upr.edu.cu/index.php/MendiveUPR/article/view/1596
  • Aldenderfer, M. y Blashfield, R. (1987). Cluster analysis. Jossey-Bass.
  • American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5a ed.). American Psychiatric Association.
  • Azad, G.F., Kim, M., Marcus, S.C., Sheridan, S.M. y Mandell, D.S. (2016). Parent‐teacher communication about children with autism spectrum disorder: An examination of collaborative problem‐solving. Psychology in the Schools, 53(10), 1.071-1.084. https://doi.org/10.1002/pits.21976
  • Azad, G., Wolk, C. y Mandell, D. (2018). Ideal interactions: Perspectives of parents and teachers of children with autism spectrum disorder. School Community Journal, 28(2), 63-84. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7958697/
  • Bitterman, A., Daley, T.C., Misra, S., Carlson, E. y Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 38, 1.509-1.517. https://doi.org/10.1007/s10803-007-0531-9
  • Bronfenbrenner, U. (1987). La ecología del desarrollo humano. Paidós.
  • Brown, H.K., Ouellette-Kuntz, H., Hunter, D., Kelley, E., Cobigo, V. y Lam, M. (2011). Beyond an autism diagnosis: Children’s functional independence and parents’ unmet needs. Journal of Autism and Developmental Disorders, 41(10), 1.291-1.302. https://doi.org/10.1007/s10803-010-1148-y
  • 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, 497-508. https://doi.org/10.1111/j.1468-3148.2012.00692.x
  • Bueno-Hernández, A., Cárdenas-Gutierrez, M., Pastor-Zamalloa, M. y Silva-Mathews, Z. (2012). Experiencias de los padres ante el cuidado de su hijo autista. Revista de Enfermería Herediana, 5(1), 26-36. https://doi.org/10.20453/renh.v5i1.4012
  • Burke, M.M. y Hodapp, R.M. (2014). Relating stress of mothers of children with developmental disabilities to family-school partnerships. Intellectual and Developmental Disabilities, 52(1), 13-23. https://doi.org/10.1352/1934-9556-52.1.13
  • Cañete, M., Sánchez, M.C. y Corcho, P. (2018). Necesidades de apoyo percibidas por padres de niños con autismo entre 2-5 años, en México. Siglo Cero, 49(3), 75-94. https://doi.org/10.14201/scero20184937593
  • Chiri, G. y Warfield, M.E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1.081-1.091. https://doi.org/10.1007/s10995-011-0833-6
  • 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 and Developmental Disability, 40(2), 156-166. https://psycnet.apa.org/doi/10.3109/13668250.2015.1023707
  • Dunst, C.J., Trivette, C.M. y Hamby, D.W. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 370-378. https://doi.org/10.1002/mrdd.20176
  • Ellis, J.T., Luiselli, J.K., Amirault, D., Byrne, S., O’MalleyCannon, B., Taras, M., Wolongevicz, J. y Sisson, R.W. (2002). Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables. Journal of Developmental and Physical Disabilities, 14(2), 191-202. https://doi.org/10.1023/A:1015223615529
  • Epstein, J.L. (2005). A case study of the partnership schools Comprehensive School Reform (CSR) model. Elementary School Journal, 106(2), 151-170. https://www.journals.uchicago.edu/doi/pdf/10.1086/499196
  • Epstein, J.L. y Sanders, M.G. (2006). Prospects for change: Preparing educators for school, family, and community partnerships. Peabody Journal of Education, 81(2), 81-120. https://doi.org/10.1207/S15327930pje8102_5
  • Farmer, J.E., Clark, M.J., Mayfield, W.A., Cheak-Zamora, N., Marvin, A.R., Law, J.K. y Law, P.A. (2014). The relationship between the medical home and unmet needs for children with autism spectrum disorders. Maternal and Child Health Journal, 18(3), 672-680. https://doi.org/10.1007/s10995-013-1292-z
  • Garbacz, S.A., McIntyre, L.L. y Santiago, R.T. (2016). Family involvement and parent–teacher relationships for students with autism spectrum disorders. School Psychology Quarterly, 31(4), 478-490. https://doi.org/10.1037%2Fspq0000157
  • 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), 1.636-1.648. https://doi.org/10.1007%2Fs10803-014-2318-0
  • Hernández-Prados, M.A., Gomariz, M.A., Parra, J. y García-Sanz, M.P. (2015). El sentimiento de pertenencia en la relación entre familia y escuela. Participación Educativa, 4(7), 49-57. shorturl.at/elmJR
  • Higgins, D.J., Bailey, S.R. y Pearce, J.C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9, 125- 137. https://doi.org/10.1177/1362361305051403
  • Hsiao, Y.J., Higgins, K., Pierce, T., Whitby, P.J.S. y Tandy, R.D. (2017). Parental stress, family quality of life, and family-teacher partnerships: Families of children with autism spectrum disorder. Research in Developmental Disabilities, 70, 152-162. https://doi.org/10.1016/j.ridd.2017.08.013
  • Jones, T.L. y Prinz, R.J. (2005). Potential roles of parental self-efficacy in parent and child adjustment: A review. Clinical Psychology Review, 25(3), 341-363. https://doi.org/10.1016/j.cpr.2004.12.004
  • Karst, J.S. y Van Hecke, A.V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247-277. https://doi.org/10.1007/s10567-012-0119-6
  • Kiami, S.R. y Goodgold, S. (2017). Support needs and coping strategies as predictors of stress level among mothers of children with autism spectrum disorder. Autism Research and Treatment, 2017. Article 8685950. https://doi.org/10.1155/2017/8685950
  • Kluth, P., Biklen, D., English-Sand, P. y Smukler, D. (2007). Going away to school. Stories of families who move to seek inclusive educational experiences for their children with disabilities. Journal of Disability Policy Studies, 18(1), 43-56. Https://doi.org/10.1177/10442073070180010501
  • Kurth, J.A., Love, H. y Pirtle, J. (2020). Parent perspectives of their involvement in IEP development for children with autism. Focus on Autism and Other Developmental Disabilities, 35(1), 36-46. https://doi.org/10.1177/1088357619842858
  • LaRoche, G. y des Rivières-Pigeon, C. (2022). From close connections to feeling misunderstood: How parents of children with Autism Spectrum Disorder perceive support from family members and friends. Canadian Journal of Family and Youth, 14(1), 1-22. https://doi.org/10.29173/cjfy29758
  • McIntyre, L.L. y Brown, M. (2018). Examining the utilization and usefulness of social support for mothers with young children with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 93-101. https://doi.org/10.3109/13668250.2016.1262534
  • McLennan J.D., Huculak S. y Sheehan D. (2008). Brief report: Pilot investigation of service receipt by young children with autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1.192-1.196. https://doi.org/10.1007/s10803-007-0535-5
  • Moodie-Dyer, A., Joyce, H.D., Anderson-Butcher, D. y Hoffman, J. (2014). Parent-caregiver experiences with the autism spectrum disorder service delivery system. Journal of Family Social Work, 17(4), 344-362. https://doi.org/10.1080/10522158.2014.903581
  • Moro, L., Jenaro, C. y Solano, M. (2015). Miedos, esperanzas y reivindicaciones de padres de niños con TEA. Siglo Cero, 46(4), 7-24. https://doi.org/10.14201/scero2015464724
  • Novo, M., Redondo, L., Seijo, D. y Arce, R., (2016). Diseño y validación de una escala para la evaluación del sentido de comunidad en grupos académicos virtuales [Design and validation of a scale to assess the sense of community in academic virtual groups]. Revista de Investigación en Educación, 14(2), 126-140. https://revistas.uvigo.es/index.php/reined/article/view/2080/2056
  • Padden, C. y James, J.E. (2017). Stress among parents of children with and without autism spectrum disorder: A comparison involving physiological indicators and parent self-reports. Journal of Developmental and Physical Disabilities, 29, 567-586. https://doi.org/10.1007/s10882-017-9547-z
  • Parsons, S., Lewis, A. y Ellins, J. (2009). The views and experiences of parents of children with autistic spectrum disorder about educational provision: Comparisons with parents of children with other disabilities from an online survey. European Journal of Special Needs Education, 24(1), 37-58. https://doi.org/10.1080/08856250802596790
  • Rattaz, C., Ledesert, B., Masson, O., Ouss, L., Ropers, G. y Baghdadli, A. (2014). Special education and care services for children, adolescents, and adults with autism spectrum disorders in France: Families’ opinion and satisfaction. Autism, 18(2), 185-193. https://doi.org/10.1177/1362361312460952
  • Russa, M., Matthews, A. y Owen-DeSchryver, J. (2015). Expanding supports to improve the lives of families of children with autism spectrum disorder. Journal of Positive Behavior Interventions, 17(2), 95-104. https://doi.org/10.1177/1098300714532134
  • Ruble, L.A. y Dalrymple, N.J. (2002). COMPASS: A parent-teacher collaborative model for students with autism. Focus on Autism and Other Developmental Disabilities, 17(2), 76- 83. https://doi.org/10.1177/10883576020170020201
  • Samsell, B., Lothman, K., Samsell, E.E. y Ideishi, R.I. (2022). Parents’ experiences of caring for a child with autism spectrum disorder in the United States: A systematic review and metasynthesis of qualitative evidence. Families, Systems & Health, 40(1), 93-104. https://doi.org/10.1037/fsh0000654
  • Siklos, S. y Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921- 933. https://doi.org/10.1007/s10803-006-0129-7
  • Simón, C. y Echeita, G. (2010). Educación inclusiva y participación de las familias: dilemas, paradojas y esperanzas. En G. Echeita, M. Sandoval, N. Illán, J. Domingo, M. Soler, N. Melero y F. Luengo (Eds.), La inclusión en la educación democrática. El éxito para todos y todas a lo largo de la vida (pp. 108-118). Proyecto Atlántida.
  • Srinivasan, S.M., Ekbladh, A., Freedman, B.H. y Bhat, A.N. (2021). Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware. Autism Research, 14, 1.736-1.758. https://doi.org/10.1002/aur.2514
  • Stephenson, J., Browne, L., Carter, M., Clark, T., Costley, D., Martin, J., Williams, K., Bruck, S., Davies, L. y Sweller, N. (2020). Facilitators and barriers to inclusion of students with autism spectrum disorder: Parent, teacher, and principal perspectives. Australasian Journal of Special and Inclusive Education, 45, 1-17. https://doi.org/10.1017/jsi.2020.12
  • Stoner, J.B., Bock, S.J., Thompson, J.R., Angell, M.E., Heyl, B.S. y Crowley, E.P. (2005). Welcome to our world: Parent perceptions of interactions between parents of young children with ASD and education professionals. Focus on Autism and Other Developmental Disabilities, 20(1), 39-51.
  • Suriá, R. (2014). Actitudes integradoras en el contexto educativo de los estudiantes con discapacidad según la percepción de sus progenitores. Bordón. Revista de Pedagogía, 66(4), 157-172. https://recyt.fecyt.es/index.php/BORDON/article/view/Bordon.2014.66410
  • Syriopoulou-Delli, C. y Polychronopoulou, S. (2019). Organization and management of the ways in which teachers and parents with children with ASD communicate and collaborate with each other. International Journal of Developmental Disabilities, 65(1), 31-49. https://doi.org/10.1080/20473869.2017.1359355
  • Ten Hoopen, L.W., de Nijs, P.F., Duvekot, J., Greaves-Lord, K., Hillegers, M.H., Brouwer, W.B. y Hakkaart-van Roijen, L. (2020). Children with an autism spectrum disorder and their caregivers: Capturing health-related and care-related quality of life. Journal of Autism and Developmental Disorders, 50(1), 263-277. https://doi.org/10.1007/s10803-019-04249-w
  • Todd, T.A., Beamer, J. y Goodreau, J. (2014). Bridging the gap: Teacher-parent partnerships for students with autism spectrum disorder. LEARNing Landscapes, 8(1), 287-304. https://doi.org/10.36510/learnland.v8i1.686
  • Tucker, V. y Schwartz, I. (2013). Parents’ perspectives of collaboration with school professionals: Barriers and facilitators to successful partnerships in planning for students with ASD. School Mental Health, 5, 3-14. https://doi.org/10.1007/s12310-012-9102-0
  • Vasilopoulou, E. y Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36- 49. https://doi.org/10.1016/j.rasd.2015.11.008
  • Waaland P.K., Burns C. y Cockrell J. (1993). Evaluation of needs of highand low-income families following pediatric traumatic brain injury. Brain Injury, 7, 135-146. https://doi.org/10.3109/02699059309008167
  • Ward, J.J. Jr. (1963). Hierarchical grouping to optimize an objective function. Journal of the American Statistical Association, 58(301), 236-244. https://doi.org/10.1080/01621459.1963.10500845
  • Wong, C., Odom, S.L., Hume, K.A., Cox, A.W., Fettig, A., Kucharczyk, S., Brock, M. E., Plavnick, J.B., Fleury, V.P. y Schultz, T.R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1.951-1.966. https://doi.org/10.1007/s10803-014-2351-z
  • World Health Organization (2022). Autism spectrum disorders. World Health Organization. https://www.who.int/es/news-room/fact-sheets/detail/autism-spectrum-disorders
  • Zablotsky, B., Boswell, K. y Smith, C. (2012). An evaluation of school involvement and satisfaction of parents of children with autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 117, 316-330. https://doi.org/10.1352/1944-7558-117.4.316
  • Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M.S., Saxena S., Yusuf, A., Shih, A. y Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5), 1-13. https://doi.org/10.1002/aur.2696