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Social Support When a Sibling Has a Disability

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Brothers and Sisters

Abstract

More than one billion people globally are estimated to have a disability of some sort (WHO 2020), and most of these are likely to have a brother or sister. The basic starting point in this chapter, is that disability has a unique influence on the sibling relationship, and can inflect the dynamic between brothers and sisters. This chapter traces how social support for and between siblings with and without disabilities is interwoven with how historically people with disabilities were understood, treated and supported. The chapter summarizes findings on sibling adjustment to a sibling’s disability; the sibling relationship where a brother or sister is disabled; and studies on caregiving and future planning as well as the limitations of the current research literature. The chapter also includes comments on social support for and between siblings during childhood, young and middle adulthood and as siblings age. The chapter shows how, for siblings of people with disabilities, their sibling relationship can be a unique emotional and practical experience over the course of their lifetime, but social support is critically important.

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References

  • Abrams, M. (2009). The well sibling: Challenges and possibilities. Am. J. Psychother. 63, 305–317.

    Article  Google Scholar 

  • Barker, K.A. (2011). Psychological functioning in adolescent siblings of children with attention-deficit/hyperactivity disorder. St. John’s University (New York), New York.

    Google Scholar 

  • Barnett, R. & Hunter, M. (2012). Adjustment of siblings of children with mental health problems: Behaviour, self-concept, quality of life and family functioning. J. Child Fam. Stud. 21, 262–272.

    Article  Google Scholar 

  • Bigby, C., Webber, R. & Bowers, B. (2014). Sibling roles in the lives of older group home residents with intellectual disability: Working with staff to safeguard wellbeing. Aust. Soc. Work Ahead-of-Print 68:4, 453–468.

    Google Scholar 

  • Burbidge, J. & Minnes, P. (2014). Relationship quality in adult siblings with and without developmental disabilities. Fam. Relat. 63, 148–162.

    Article  Google Scholar 

  • Burke, M.M., Lee, C.E., Arnold, C.K. & Owen, A. (2016). Correlates of sibling relationship quality and caregiving reception of adults with disabilities. J. Dev. Phys. Disabil. Early View. 28:5, 735–750.

    Google Scholar 

  • Burke, M.M., Taylor, J.L., Urbano, R. & Hodapp, R.M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. Am. J. Intellect. Dev. Disabil. 117, 33–47.

    Article  Google Scholar 

  • Cuskelly, M. (1999). Adjustment of siblings of children with a disability: Methodological issues. Int. J. Adv. Couns. 21, 111–124.

    Article  Google Scholar 

  • Cuskelly, M. & Gunn, P. (2006). Adjustment of children who have a sibling with Down syndrome: Perspectives of mothers, fathers and children. J. Intellect. Disabil. Res. 50, 917–925. https://doi.org/10.1111/j.1365-2788.2006.00922.x.

    Article  Google Scholar 

  • Dallas, E., Stevenson, J. & McGurk, H. (1993a). Cerebral palsied children’s interactions with siblings I: Influence of severity of disability, age and birth order. J. Child Psychol. Psychiatry 34, 621–647.

    Article  Google Scholar 

  • Dallas, E., Stevenson, J. & McGurk, H. (1993b). Cerebral palsied children’s interactions with siblings II: Interactional structure. J. Child Psychol. Psychiatry 34, 649–671.

    Article  Google Scholar 

  • Davys, D., Mitchell, D. & Haigh, C. (2014). Futures planning—adult sibling perspectives. Br. J. Learn. Disabil. Early View. 43:3, 219–226.

    Article  Google Scholar 

  • Department of Health. (2001). Valuing people. London: HMSO.

    Google Scholar 

  • Dew, A. (2010). Recognising reciprocity over of the life course: Adults with Cerebral Palsy and their non-disabled siblings. University of Sydney, Sydney, Australia.

    Google Scholar 

  • Doody, M.A., Hastings, R.P., O’Neill, S. & Grey, I.M. (2010). Sibling relationships in adults who have siblings with or without intellectual disabilities. Res. Dev. Disabil. 31, 224–231.

    Article  Google Scholar 

  • Eisenberg, L., Baker, B.L. & Blacher, J. (1998). Siblings of children with mental retardation living at home or in residential placement. J. Child Psychol. Psychiatry 39, 355–363.

    Article  Google Scholar 

  • Farber, B. (1959). Effects of severely mentally retarded children on family integration. J. Early Interv. 13, 230–238.

    Google Scholar 

  • Farber, B. (1960). Family organization and crisis: Maintenance of integration in families with a severely retarded child. Monogr. Soc. Res. Child Dev. 25, 3–93.

    Article  Google Scholar 

  • Farber, B. (1963). Interaction with retarded siblings and life goals of children. Marriage Fam. Living 25, 96–98.

    Article  Google Scholar 

  • Farber, B. & Jenne, W.C. (1963). Family organization and parent–child communication: Parents and siblings of a retarded child. Monogr. Soc. Res. Child Dev. 28, 2–77.

    Article  Google Scholar 

  • Fishbein, L.B. (2010). Examining caregiving and household responsibility in typically developing siblings of children with an autism spectrum disorder. State University of New York at Binghamton, New York.

    Google Scholar 

  • Guse, T. & Harvey, C. (2010). Growing up with a sibling with dwarfism: Perceptions of adult non-dwarf siblings. Disabil. Soc. 25, 387–401.

    Article  Google Scholar 

  • Hastings, R.P. (2014). Children and Adolescents Who Are the Siblings of Children with Intellectual Disabilities or Autism: Research Evidence. Sibs UK with the University or Warwick, West Yorkshire.

    Google Scholar 

  • Heller, T. & Arnold, C.K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships and future planning. J. Policy Pract. Intellect. Disabil. 7, 16–25.

    Article  Google Scholar 

  • Heller, T. & Caldwell, J. (2006). Supporting aging caregivers and adults with developmental disabilities in future planning. Ment. Retard. 44, 189–202.

    Article  Google Scholar 

  • Hwang, S.K. & Charnley, H., (2010). Making the familiar strange and making the strange familiar: Understanding Korean children’s experiences of living with an autistic sibling. Disabil. Soc. 25, 579–592.

    Article  Google Scholar 

  • Incledon, E., Williams, L., Hazell, T., Heard, T.R., Flowers, A. & Hiscock, H. (2015). A review of factors associated with mental health in siblings of children with chronic illness. J. Child Health Care 19, 182–194.

    Article  Google Scholar 

  • Kaminsky, L. & Dewey, D. (2001). Sibling relationships of children with autism. J. Autism Dev. Disord. 31, 399–410.

    Article  Google Scholar 

  • Kramer, J. (2009). People with disabilities and their siblings: Building concepts of support and transitions. University of Illinois at Chicago, Chicago.

    Google Scholar 

  • Kramer, J., Hall, A. & Heller, T. (2013). Reciprocity and social capital in sibling relationships of people with disabilities. Intellect. Dev. Disabil. 51, 482–495.

    Article  Google Scholar 

  • Kroner, B.L., Ardini, M.-A., Bumbut, A. & Gaillard, W.D. (2018). Parental perspectives of the impact of Epilepsy and Seizures on siblings of children with Epilepsy. J. Pediatr. Health Care 32, 348–355. https://doi.org/10.1016/j.pedhc.2017.12.004.

    Article  Google Scholar 

  • Leane, M. (2020). “I don’t care anymore if she wants to cry through the whole conversation, because it needs to be addressed”: Adult siblings’ experiences of the dynamics of future care planning for brothers and sisters with a developmental disability. J. Appl. Res. Intellect. Disabil. jar.12716. https://doi.org/10.1111/jar.12716.

  • Lee, C.E., Burke, M.M., Arnold, C.K. & Owen, A. (2018). Perceptions of non-caregiving roles among siblings of adults with intellectual and developmental disabilities. Res. Pract. Intellect. Dev. Disabil. 5, 118–127. https://doi.org/10.1080/23297018.2018.1493393.

    Article  Google Scholar 

  • Love, V., Richters, L., Didden, R., Korzilius, H. & Machalicek, W. (2012). Sibling relationships in individuals with Angelman syndrome: A comparative study. Dev. Neurorehabilitation 15, 84–90.

    Article  Google Scholar 

  • Lovell, B. & Wetherell, M.A. (2016). The psychophysiological impact of childhood autism spectrum disorder on siblings. Res. Dev. Disabil. 49–50, 226–234.

    Article  Google Scholar 

  • Macks, R.J. & Reeve, R.E. (2007). The adjustment of non-disabled siblings of children with autism. J. Autism Dev. Disord. 37, 1060–1067.

    Article  Google Scholar 

  • Meltzer, A. (2015). Siblings’ relational experiences of disability during young adulthood. UNSW Australia.

    Google Scholar 

  • Meltzer, A. (2017). ‘I couldn’t just entirely be her sister’: The relational and social policy implications of care between young adult siblings with and without disabilities. J. Youth Stud. 20, 1013–1027.

    Article  Google Scholar 

  • Meltzer, A. (2018). Embodying and enacting disability as siblings: Experiencing disability in relationships between young adult siblings with and without disabilities. Disabil. Soc. 33:8, 1212–1233.

    Article  Google Scholar 

  • Meltzer, A. & Kramer, J. (2016). Siblinghood through disability studies perspectives: Diversifying discourse and knowledge about siblings with and without disabilities. Disabil. Soc. 31, 17–32.

    Article  Google Scholar 

  • Meyer, D. (2017). A Brief History of the Sibling Movement. Presented at the Sibling Leadership Network Conference, Hartford, CT.

    Google Scholar 

  • Mulroy, S., Robertson, L., Aiberti, K., Leonard, H. & Bower, C. (2008). The impact of having a sibling with an intellectual disability: Parental perspectives in two disorders. J. Intellect. Disabil. Res. 52, 216–229.

    Article  Google Scholar 

  • Neely-Barnes, S.L. & Graff, J.C. (2011). Are there adverse consequences to being a sibling of a person with a disability? A propensity score analysis. Fam. Relat. 60, 331–341.

    Article  Google Scholar 

  • Nuttall, A.K., Coberly, B. & Diesel, S.J. (2018). Childhood caregiving roles, perceptions of benefits, and future caregiving intentions among typically developing adult siblings of individuals with autism spectrum disorder. J. Autism Dev. Disord. 48, 1199–1209.

    Article  Google Scholar 

  • Oliver, M. (1990). The Individual and Social Models of Disability. Presented at the Joint Workshop of the Living Options Group and the Research Unit of the Royal College of Physicians on people with established locomotor disabilities in hospitals, 23 July 1990.

    Google Scholar 

  • Perenc, L., Radochoński, M. & Radochońska, A. (2015). Prosocial competencies among adolescent siblings of the physically disabled. Curr. Issues Personal. Psychol. 34, 195–202.

    Article  Google Scholar 

  • Petalas, M.A., Hastings, R.P., Nash, S., Lloyd, T. & Dowey, A. (2009). Emotional and behavioural adjustment in siblings of children with intellectual disability with and without autism. Autism. 13, 471–483.

    Article  Google Scholar 

  • Pilowsky, T., Yirmiya, N., Doppelt, O., Gross Tsur, V. & Shalev, R.S. (2004). Social and emotional adjustment of siblings of children with autism. J. Child Psychol. Psychiatry 45, 855–865.

    Article  Google Scholar 

  • Rawson, H. (2010). “I’m going to be here long after you’ve gone”—Sibling perspectives of the future. Br. J. Learn. Disabil. 38, 225–231.

    Article  Google Scholar 

  • Roberts, R.M., Ejova, A., Giallo, R., Strohm, K. & Lillie, M.E. (2016). Support group programme for siblings of children with special needs: Predictors of improved emotional and behavioural functioning. Disabil. Rehabil. 38:21, 2063–2072.

    Article  Google Scholar 

  • Rossetti, Z., Lee, C., Burke, M. & Hall, S. (2020). Perspectives about adult sibling relationships: A dyadic analysis of siblings with and without intellectual and developmental disabilities. Res. Dev. Disabil. 96, 103538. https://doi.org/10.1016/j.ridd.2019.103538.

    Article  Google Scholar 

  • Rossiter, L. & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. J. Child Fam. Stud. 10, 65–84.

    Article  Google Scholar 

  • Siblings Australia. (2017). Final report: Adult sibling project. Siblings Australia, Adelaide. http://siblingsaustralia.org.au/wp-content/uploads/2017/10/Final-Report-SDF-Aug-2017.pdf. Accessed April 8, 2020.

  • Siblings Australia. (2018). Final report: Siblings ILC mapping project report. Siblings Australia, Adelaide. http://siblingsaustralia.org.au/wp-content/uploads/2018/01/FINAL-Siblings-ILC-Mapping-Project-Report.pdf. Accessed April 8, 2020.

  • Senel, H.G. & Akkök, F. (1995). Stress levels and attitudes of normal siblings of children with disabilities. Int. J. Adv. Couns. 18, 61–68.

    Article  Google Scholar 

  • Shivers, C.M. (2019). Empathy and perceptions of their brother or sister among adolescent siblings of individuals with and without autism spectrum disorder. Res. Dev. Disabil. 92, 103451. https://doi.org/10.1016/j.ridd.2019.103451.

    Article  Google Scholar 

  • Shojaee, S., Hemati Alamdarloo, G. & Nikoobin Borujeni, F. (2018). Adjustment difficulties of siblings of children with disabilities and typically developing children. Int. J. Incl. Educ. Early View 24:4, 414–426.

    Google Scholar 

  • Stoneman, Z. (2005). Siblings of children with disabilities: Research themes. Mental Retardation. 43:5, 339–350.

    Google Scholar 

  • Stoneman, Z., Brody, G.H., Davis, C.H. & Crapps, J.M. (1988). Childcare responsibilities, peer relations and sibling conflict: Older siblings of mentally retarded children. Am. J. Ment. Retard. 93, 174–183.

    Google Scholar 

  • Strohm, K. (2018). Commentary on “Perceptions of non-caregiving roles among siblings of adults with intellectual and developmental disabilities” (Lee, Burke, Arnold, and Owen, 2018). Res. Pract. Intellect. Dev. Disabil. 5, 128–137. https://doi.org/10.1080/23297018.2018.1525306.

    Article  Google Scholar 

  • Tomeny, T.S., Rankin, J.A., Baker, L.K., Eldred, S.W. & Barry, T.D. (2018). Discrepancy in perceived social support among typically developing siblings of youth with autism spectrum disorder. Autism. 23:3, 594–606.

    Article  Google Scholar 

  • Tozer, R., Atkin, K. & Wenham, A. (2013). Continuity, commitment and context: Adult siblings of people with autism plus learning disability. Health Soc. Care Community 21, 480–488.

    Article  Google Scholar 

  • Tsai, H.-W.J., Cebula, K., Liang, S.H. & Fletcher-Watson, S. (2018). Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom. Res. Dev. Disabil. 83, 206–216.

    Article  Google Scholar 

  • United Nations. (2006). Convention on the Rights of Persons with Disabilities (CRPD). https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Accessed March 27, 2020.

  • UPIAS. (1976). Fundamental principles of disability, union of the physically impaired against segregation aims and policy statement. UPIAS, London.

    Google Scholar 

  • Wehmeyer, M.L. (Ed.). (2013). Oxford library of psychology. The Oxford handbook of positive psychology and disability. Oxford University Press, Oxford.

    Google Scholar 

  • Wolfensberger, W. (1972). Normalization: The principle of normalization in human services. National Institute of Mental Retardation, Leonard Crainford, Toronto.

    Google Scholar 

  • World Health Organisation. (2020). Disabilities. https://www.who.int/topics/disabilities/en/. Accessed March 27, 2020.

  • Yavuz, M. & Şafak, P. (2019). Investigating the time children with autistic spectrum disorders spend with their typically developing siblings. Univers. J. Educ. Res. 7, 1795–1807.

    Article  Google Scholar 

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Kramer, J., Meltzer, A., Strohm, K. (2021). Social Support When a Sibling Has a Disability. In: Buchanan, A., Rotkirch, A. (eds) Brothers and Sisters. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-55985-4_15

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  • DOI: https://doi.org/10.1007/978-3-030-55985-4_15

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