Knowledge about the experiences of children with chronic disorders (CCD) is often based on parent-report. Obtaining self-report from CCD may be challenging due to cognitive impairments associated with many disorders. We explored siblings’ perspectives on the experiences of their brothers and sisters with CCD, which represent a unique intragenerational and peer-based viewpoint. Siblings of children with various genetic disorders involving physical and/or intellectual disabilities were recruited from family courses at a specialist center for rare disorders. Participants (N = 58; M age= 11.4 years, SD = 2.4; range 7 to 17 years; 69.0% girls) attended group sessions focused on siblings’ diagnostic knowledge and emotional experiences. We conducted a thematic analysis following guidelines for consensual qualitative research of 20 videotaped and transcribed group sessions for 58 siblings of CCD. We interpreted siblings’ perspectives as indicating considerable efforts to understand and reflect upon the state of mind of the CCD along the following main themes: Abilities; Intensions; Insight; Emotions; Personality, preferences and desires; and Normality versus difference. Siblings emphasized CCD’s physical, cognitive, and social abilities, focusing more on strengths than limitations. A desire to be normal and lack of insight were common inferred reasons for problematic behavior displayed by the CCD. Siblings expressed fears of bullying of the CCD. In conclusion, siblings show psychologically complex insights into the experiences and mindsets of CCD and should be considered as informants in research and in informing practice interventions for CCD, alongside their parents.
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Banerjee, M., Capozzoli, M., McSweeney, L., & Sinha, D. (1999). Beyond kappa: A review of interrater agreement measures. The Canadian Journal of Statistics, 27, 3–23.
Baumann, S. L., Dyches, T. T., & Braddick, M. (2005). Being a sibling. Nursing Science Quarterly, 18(1), 51–58. https://doi.org/10.1177/0894318404272108.
Blake, J. J., Lund, E. M., Zhou, Q., Kwok, O. M., & Benz, M. R. (2012). National prevalence rates of bully victimization among students with disabilities in the United States. School Psychology Quarterly, 27(4), 210–222. https://doi.org/10.1037/spq0000008.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa.
Cheak-Zamora, N. C., & Thullen, M. (2017). Disparities in quality and access to care for children with developmental disabilities and multiple health conditions. Maternal and Child Health Journal, 21(1), 36–44. https://doi.org/10.1007/s10995-016-2091-0.
Dauz Williams, P., Piamjariyakul, U., Graff, J. C., Stanton, A., Guthrie, A. C., Hafeman, C., et al. (2010). Developmental disabilities: Effects on well siblings. Issues in Comprehensive Pediatric Nursing, 33(1), 39–55. https://doi.org/10.3109/01460860903486515.
De Los Reyes, A., & Kazdin, A. E. (2005). Informant discrepancies in the assessment of childhood psychopathology: A critical review, theoretical framework, and recommendations for further study. Psychological Bulletin, 131(4), 483–509. https://doi.org/10.1037/0033-2909.131.4.483.
Diener, M. L., Anderson, L., Wright, C. A., & Dunn, M. L. (2015). Sibling relationships of children with autism spectrum disorder in the context of everyday life and a strength-based program. Journal of Child and Family Studies, 24(4), 1060–1072. https://doi.org/10.1007/s10826-014-9915-6.
Einfeld, S. L., Ellis, L. A., & Emerson, E. (2011). Comorbidity of intellectual disability and mental disorder in children and adolescents: A systematic review. Journal of Intellectual and Developmental Disability, 36(2), 137–143. https://doi.org/10.1080/13668250.2011.572548.
Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107–115. https://doi.org/10.1111/j.1365-2648.2007.04569.x.
EURORDIS (2014). Rare diseases Europe. Retrieved from http://www.eurordis.org/.
Golubovic, S., & Skrbic, R. (2013). Agreement in quality of life assessment between adolescents with intellectual disability and their parents. Research in Developmental Disabilities, 34(6), 1863–1869. https://doi.org/10.1016/j.ridd.2013.03.006.
Granat, T., Nordgren, I., Rein, G., & Sonnander, K. (2012). Group intervention for siblings of children with disabilities: A pilot study in a clinical setting. Disability and Rehabilitation, 34, 69–75. https://doi.org/10.3109/09638288.2011.587087.
Grieco, F., Loijens, L., Zimmermann, P., & Spink, A. (2007). The observer XT reference manual. Wageningen: Noldus Information Technology.
Haukeland, Y. B., Fjermestad, K. W., Mossige, S., & Vatne, T. M. (2015). Emotional experiences among siblings of children with rare disorders. Journal of Pediatric Psychology, 40(7), 712–720.
Hill, C. E., Knox, S., Thompson, B. J., Williams, E. N., Hess, S. A., & Ladany, N. (2005). Consensual qualitative research: An update. Journal of Counseling Psychology, 52, 196–205. https://doi.org/10.1037/0022-018.104.22.168.
Hill, C. H., Thompson, B. J., & Williams, E. N. (1997). A guide to conducting consensual qualitative research. The Counseling Psychologist, 25, 517–572. https://doi.org/10.1177/0011000097254001.
Jacobs, M., Downie, H., Kidd, G., Fitzsimmons, L., Gibbs, S., & Melville, C. (2016). Mental health services for children and adolescents with learning disabilities: A review of research on experiences of service users and providers. British Journal of Learning Disabilities, 44(3), 225–232. https://doi.org/10.1111/bld.12141.
Jones, L., Bellis, M. A., Wood, S., Hughes, K., McCoy, E., Eckley, L., et al. (2012). Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies. Lancet, 380(9845), 899–907. https://doi.org/10.1016/s0140-6736(12)60692-8.
Kao, B., Romero-Bosch, L., Plante, W., & Lobato, D. (2012). The experiences of Latino siblings of children with developmental disabilities. Child: Care, Health and Development, 38(4), 545–552. https://doi.org/10.1111/j.1365-2214.2011.01266.x.
Kilmer, R. P., Cook, J. R., Munsell, E. P., & Salvador, S. K. (2010). Factors associated with positive adjustment in siblings of children with severe emotional disturbance: The role of family resources and community life. American Journal of Orthopsychiatry, 80(4), 473–481. https://doi.org/10.1111/j.1939-0025.2010.01050.x.
Kilmer, R. P., Cook, J. R., Taylor, C., Kane, S. F., & Clark, L. Y. (2008). Siblings of children with severe emotional disturbances: Risks, resources, and adaptation. American Journal of Orthopsychiatry, 78(1), 1–10. https://doi.org/10.1037/ow2-9422.214.171.124.
Levi, R. B., & Drotar, D. (1999). Health-related quality of life in childhood cancer: Discrepancy in parent-child reports. International Journal of Cancer Supplement, 12, 58–64. https://doi.org/10.1002/(SICI)1097-0215(1999)83:12+%3c58:AID-IJC11%3e3.0.CO;2-A.
Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., et al. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics, 29(3), 152–160. https://doi.org/10.1097/DBP.0b013e318165c7a0.
Lobato, D. J., & 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/10.1093/jpepsy/27.8.711.
Mandleco, B., & Webb, A. E. M. (2015). Sibling perceptions of living with a young person with Down syndrome or autism spectrum disorder: An integrated review. Journal for Specialists in Pediatric Nursing, 20(3), 138–156. https://doi.org/10.1111/jspn.12117.
Mensch, S. M., Rameckers, E. A. A., Echteld, M. A., & Evenhuis, H. M. (2015). Instruments for the evaluation of motor abilities for children with severe multiple disabilities: A systematic review of the literature. Research in Developmental Disabilities, 47, 185–198. https://doi.org/10.1016/j.ridd.2015.09.002.
Meyer, L. E., & Ostrosky, M. M. (2014). Measuring the friendships of young children with disabilities: A review of the literature. Topics in Early Childhood Special Education, 34(3), 186–196. https://doi.org/10.1177/0271121413513038.
Murphy, L. K., Murray, C. B., & Compas, B. E. (2017). Topical review: Integrating findings on direct observation of family communication in studies comparing pediatric chronic illness and typically developing samples. Journal of Pediatric Psychology, 42(1), 85–94. https://doi.org/10.1093/jpepsy/jsw051.
Phillips, R. S. C. (1999). Intervention with siblings of children with developmental disabilities. Families in Society, 80, 569–577. https://doi.org/10.1606/1044-3894.1781.
Pinquart, M. (2017). Systematic review: Bullying involvement of children with and without chronic physical illness and/or physical/sensory disability-a meta-analytic comparison with healthy/nondisabled peers. Journal of Pediatric Psychology, 42(3), 245–259. https://doi.org/10.1093/jpepsy/jsw081.
Pinquart, M., & Teubert, D. (2012). Academic, physical, and social functioning of children and adolescents with chronic physical illness: A meta-analysis. Journal of Pediatric Psychology, 37, 376–389. https://doi.org/10.1093/jpepsy/jsr106.
Pollard, C., Barry, C., Freedman, B., & Kotchick, B. (2013). Relationship quality as a moderator of anxiety in siblings of children diagnosed with autism spectrum disorders or Down syndrome. Journal of Child and Family Studies, 22, 647–657. https://doi.org/10.1007/s10826-012-9618-9.
Shields, N., Synnot, A. J., & Barr, M. (2012). Perceived barriers and facilitators to physical activity for children with disability: A systematic review. British Journal of Sports Medicine, 46(14), 989–997. https://doi.org/10.1136/bjsports-2012-090236.
Sinclair, J., Hansen, S. G., Machalicek, W., Knowles, C., Hirano, K. A., Dolata, J. K., et al. (2018). A 16-year review of participant diversity in intervention research across a selection of 12 special education journals. Exceptional Children, 84(3), 312–329. https://doi.org/10.1177/0014402918756989.
Skotko, B. G., & Levine, S. P. (2006). What the other children are thinking: Brothers and sisters of persons with Down syndrome. In American Journal of Medical Genetics: Part C, Seminars in Medical Genetics (Vol. 142, pp. 180–186). https://doi.org/10.1002/ajmg.c.
Smith, S. E., & Cascella, P. W. (2007). Ratings of communication competence by siblings of persons with Down syndrome. Education and Training in Developmental Disabilities, 42(2), 182–189.
Smith, T., & Perry, A. A. (2005). Sibling support group for brothers and sisters of children with autism. Journal of Developmental Disabilities, 11, 77–88.
Stalker, K., & Connors, C. (2004). Children’s perceptions of their disabled siblings: ‘She’s different but it’s normal for us’. Children and Society, 18, 218–230. https://doi.org/10.1002/CHI.794.
Tonkin, B. L., Ogilvie, B. D., Greenwood, S. A., Law, M. C., & Anaby, D. R. (2014). The participation of children and youth with disabilities in activities outside of school: A scoping review. Canadian Journal of Occupational Therapy-Revue Canadienne D’Ergotherapie, 81(4), 226–236. https://doi.org/10.1177/0008417414550998.
Tudor, M. E., & Lerner, M. D. (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/10.1007/s10567-014-0175-1.
Vanegas, S. B., & 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.
Vatne, T. M., Haukeland, Y. B., Mossige, S., & Fjermestad, K. W. (2019). The development of a joint parent-child intervention for siblings of children with chronic disorders. Fokus på familien, 47(01), 20–35.
Vermaes, I. P. R., van Susante, A. M. J., & van Bakel, H. J. A. (2012). Psychological functioning of siblings in families of children with chronic health conditions: A meta-analysis. Journal of Pediatric Psychology, 37(2), 166–184. https://doi.org/10.1093/jpepsy/jsro81.
Williams, P. D., Williams, A. R., Graff, J. C., Hanson, S., Stanton, A., Hafeman, C., et al. (2003). A community-based intervention for siblings and parents of children with chronic illness or disability: The ISEE Study. Journal of Pediatrics, 143(3), 386–393. https://doi.org/10.1067/s0022-3476(03)00391-3.
We would like to thank the participating families, the group leaders, and the facilitators.
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Fjermestad, K.W., Haukeland, Y.B., Mossige, S. et al. Children’s Perspectives on the Experiences of Their Siblings with Chronic Disorders. Clin Soc Work J 47, 290–299 (2019). https://doi.org/10.1007/s10615-019-00705-3