STEPS – Group Therapy-Educational Program for Siblings of children with disabilities – An intensive alternative of program for siblings of children with Williams syndrome
Abstract
Sibship is one of the most important relationships in life. However, this relationship may be very specific if one of the siblings suffers from a developmental disorder. In such a case healthy siblings are confronted with a similar number of stressful and challenging situations as their parents. These stressors lead to an increased incidence of mental health problems in this population. In order to support and fulfil the needs of healthy siblings, STEPS program (Group Therapeutic Program for Siblings of Children with Disabilities) was developed. Five siblings of children with Williams syndrome have participated in piloting of an intensive alternative of this program. The aim of this article is to provide basic information on the pilot of this program and provide suggestions for further development of support for at-risk and in our country neglected population – siblings of children with disabilities.
https://doi.org/10.29364/epsy.342
(Fulltext in Czech)
Keywords
sibship, group work, therapy, education, Williams syndromeLiterature
Banks, P., Cogan, N., Deeley, S., Hill, M., Riddell, S., & Tisdal, K. (2001). Seeing the Invisible Children and Young People Affected by Disability. Disability & Society, 16(6), 797–814. https://doi.org/…590120083967
Burke, P., & Montgomery, S. (2000). Siblings of children with disabilities: A pilot study. Journal of Learning Disabilities, 4(3), 227–236. https://doi.org/…470000400305
Bzdúch, V., & Jariabková, K. (2002). História Williamsovho syndrómu. Časopis lékařů českých, 141(20), 651–655.
Caspi, J. (ed.). (2011). Sibling development: implications for mental health practitioners. New York: Springer Publishing Company.
Conway, S., & O'Neill, K. (2004). Home and away. Learning Disability Practice, 7(7), 34–38. https://doi.org/…7.7.34.c1587
Dodd, L. (2004). Supporting the Siblings of Young Children with Disabilities. British Journal of Special Education, 31(1), 41–49. https://doi.org/…2004.00325.x
Dyson, L. (1998). A support program for siblings of children with disabilities: What siblings learn and what they like. Psychology in the Schools, 35(1), 57–65. https://doi.org/10.1002/(SICI)1520–6807(199801)35:1<57::AID-PITS5>3.0.CO;2-R
Evans, J., Jones, J., & Mansell, I. (2001). Supporting siblings: Evaluation of support groups for brothers and sisters of children with learning disabilities and challenging behaviour. Journal of Learning Disabilities, 5(1), 69–78. https://doi.org/…470100500107
Ford, T., Russell, A., Racey, D., MacDIarmid, F., & Goodman, R. (2017). The predictors of persistent DSM-IV disorders in 3-year follow-ups of the British Child and Adolescent Mental Health Surveys 1999 and 2004. Psychological Medicine, 47(6), 1126–1137. https://doi.org/…291716003214
Frigerio, A., Rucci, P., Goodman, R., Ammaniti, M., Ombreta, C., Pina, C., De Girolamo, G., Lenti, C., Lucarelli, L., Mani, E., Martinuzzi, A., Micali, N., & Milone, A. (2009). Prevalence and correlates of mental disorders among adolescents in Italy: the PrISMA study. European Child & Adolescent Psychiatry, 18(4), 217–226. https://doi.org/…7-008-0720-x
Gettings, S., Santosh, F., & Paramala, J. (2015). Facilitating support groups for siblings of children with neurodevelopmental disorders using audioconferencing: a longitudinal feasibility study. Child & Adolescent Psychiatry & Mental Health, 9(1), 1–15. https://doi.org/…4-015-0041-z
Giallo, R., Gavidia-Payne, S., Minett, B., & Kapoor, A. (2012). Sibling voices: The self-reported mental health of siblings of children with a disability. Clinical Psychologist, 16(1), 36–43. https://doi.org/…2011.00035.x
Harris, S., & Glassberg, B. (2003). Siblings of Children With Autism: A Guide for Families. Bethesda: Woodbine House.
Hartling, L., Milne, A., Tjosvold, L., Wrightson, D., & Newton, A. (2014). A systematic review of interventions to support siblings of children with chronic illness or disability. Journal of Paediatrics and Child Health, 50(10), E26-E38. https://doi.org/…2010.01771.x
Havelka, D. (2018). STEPS: Skupinový Terapeuticko-Edukační Program pro Sourozence dětí s poruchami autistického spektra: tvorba, implementace a evaluace programu. Dizertační práce. Brno: Masarykova univerzita.
Havelka, D., & Bartošová, K. (2019). Speciální sourozenci: život se sourozencem s postižením. Praha: Portál.
Heiervang, E., Plessen, K., Bjelland, I., Stormark, K., Posserud, M., Ullebø, A., Lie, S., Lundervold, A., Heimann, M., Goodman, R., & Gillberg, C. (2007). Psychiatric disorders in Norwegian 8– to 10-year-olds: An epidemiological survey of prevalence, risk factors, and service use. Journal of the American Academy of Child and Adolescent Psychiatry, 46(4), 438–447. https://doi.org/…3e31803062bf
Hilgenberg, M. (2011). Sprich mit mir mit Hand und Mund: Gibt es eine Aufholphase bei Kindern mit Williams-Beuren-Syndrom? Der Einfluss von Gesten auf die sprachliche Entwicklung. Berlin: Pro Business.
Kárová, Š., Blatný, M., Bendová, M. (2009). Psychosociální potřeby zdravých sourozenců onkologicky nemocných dětí aneb " zapomenuté děti". Československá psychologie, 53(2), 149–157.
Kárová, Š., Blatný, M., Jelínek, M., Kepák, T., Tóthová K. (2013). Sourozenci onkologicky nemocných dětí: subjektivně vnímané změny v životě a kvalita jejich života 6 měsíců po stanovení diagnózy nemocnému sourozenci. Československá psychologie, 57(3), 218–229.
Lobato, D., & Kao, B. T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of Pediatric Psychology, 27(8), 711–716. https://doi.org/…psy/27.8.711
Macks, R., & Reeve, R. (2007). The adjustment of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37(6), 1060–1067. https://doi.org/…3-006-0249-0
Mareš, J. (2013). Diagnostika a intervence u zdravých dětí, jejichž sourozenec je vážně nemocný. Československá pediatrie, 68(4), 266–277.
Meyer, D. (1985). SIBSHOPS: A Handbook for Implementing Workshops for Siblings of Children with Special Needs. Seattle,WA: University of Washington Press.
Michalík, J. (2012). Metodika práce se žákem se vzácným onemocněním. Pardubice: Studio Press. Naylor, A., & Prescott, P. (2004). Invisible children? The need for support groups for siblings of disabled children. British Journal of Special Education, 31(4), 199–206. https://doi.org/…2004.00355.x
Richman, S. (2006). Výchova dětí s autismem: aplikovaná behaviorální analýza. Praha: Portál.
Rossiter, L., & Sharpe, D. (2001). The Siblings of Individuals with Mental Retardation: A Quantitative Integration of the Literature. Journal of Child, 10(1), 65–84. https://doi.org/…016629500708
Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: a meta-analysis. Journal of Pediatric Psychology, 27(8), 699–710. https://doi.org/…psy/27.8.699
Scheiber, B. (2003). Träume verwirklichen: Ein Handbuch für Eltern von Kindern mit Williams-Beuren-Syndrom. Garching: WBS Regionalgruppe Bayern-Sud.
Smith, T., & Perry, A. (2004). A Sibling Support Group for Brothers and Sisters of Children with Autism. Journal on Developmental Disabilities, 11(1), 77–88. Dostupné z https://oadd.org/…ithperry.pdf
Strohm, K., & Nesa, M. (2010). Groups for siblings of children with special needs: a manual for facilitators. Adelaide: Siblings Australia Inc.
Tudor, M., & Lerner, M. (2015). Intervention and support for siblings of youth with developmental disabilities: a systematic review. Clinical Child and Family Psychology Review, 18(1), 1–23. https://doi.org/…7-014-0175-1
Verté, S., Roeyers, H., & Buysse, A. (2003). Behavioural problems, social competence and self-concept in siblings of children with autism. Child: Care, Health & Development, 29(3), 193–205. https://doi.org/…2003.00331.x