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Psychosocial research now gives us insight about the quality of life for families of individuals with different genetic conditions. We highlight some of the research about Down syndrome as a case study below, but this kind of research is also available for other conditions like Turner syndrome, Klinefelter syndrome, and others. Families really value this information to understand what life is like for people living with these conditions and their families.

  • One study shows the divorce rate for parents who have children with Down syndrome is lower than the divorce rate for the typical population (Urbano & Hodapp, 2007)​
  • 94% of brothers and sisters say they are proud of their sibling with Ds and 88% said they were better people because of the sibling. (Skotko & Levine, 2011)​
  • Siblings of children with Down syndrome tend to be more compassionate and well-adjusted than their peers (Dykens, 2005)​
  • A large number of adult siblings report close relationships with their siblings with Down syndrome (Orsmond & Seltzer, 2007)​
  • People with Down syndrome are loved as valued members of their families. 79% of parents said they felt their outlook on life was more positive because of having a child with Ds (Skotko and Levine, 2011). ​

References

  1. Urbano, R., Hodapp R. (2007). Divorce in families of children with Down syndrome: A population-based study. American Journal on Mental Retardation, 112: 261-274.Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a brother or sister with Down syndrome:  Perspectives from siblings.  American Journal of Medical Genetics Part A, 155:2348-2359.
  2. Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a brother or sister with Down syndrome:  Perspectives from siblings.  American Journal of Medical Genetics Part A, 155:2348-2359.
  3. Dykens EM. Happiness, well-being, and character strengths: outcomes for families and siblings of persons with mental retardation. Ment Retard. 2005;43(5):360–364
  4. Orsmond GI, Seltzer MM. Siblings of individuals with autism or Down syndrome: effects on adult lives. J Intellect Disabil Res. 2007;51(Pt 9):682–696
  5. Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A, 155:2335-2347.