Emotional Problems Facing Siblings of Children With Disabilities

Acknowledging Strength and Resiliency

Despite the challenges siblings face, they also reap rewards. “When I give workshops, I find a spectrum,” Meyer reported. “Someone might say, ‘Having a brother with Down syndrome was one of the most ennobling, enriching aspects of my life that made me who I am today.’ And another may say, ‘The reason my life is so messed up is that I grew up with a brother with Down syndrome.’ ” So it is important not to generalize and to recognize that most people “are right in the middle of the bell curve, in that they experience both good and bad aspects.”

Dr Milevsky pointed out that siblings of children with disabilities “may take the role [of] leader, teacher, or model of proper social behavior and skills,” and that they may develop a “loyal and protective attitude toward their sibling.” Many grow up to enter the helping professions and feel a sense of work satisfaction because “their work is more elevated and meaningful and is part of their identity as a result of their experience of having a sibling with a disability.”

Tips for Psychiatrists

Both experts agreed that psychiatrists can play a central role in promoting the mental health of siblings.

• Inquire about siblings: “If you have a disabled child or adolescent patient, always ask parents if there is a sibling in the family,” Meyer advised.
• Discuss the effect of the child’s disability on the sibling: Important issues to raise might include the right of siblings to self-determination, the concerns of siblings, expectations for typically developing siblings (eg, teasing and arguing as normal aspects of sibling relationships), including siblings in the definition of “family,” addressing siblings’ concerns about the future, improving communication, the importance of 1-on-1 time with the well sibling, and the right of the well sibling to a safe environment.
• Help parents find appropriate resources: These resources can include books, online or in-person support groups, specialized medical and mental health professionals, nurses, school personnel, and other community resources. Online resources include the Sibling Support Project, the Sibling Leadership Network, and the National Alliance on Mental Illness.
• Being a sibling never stops: Because siblings are typically involved in caring for a person with a disability throughout the lifespan, psychiatrists and other mental health professionals treating a disabled individual should inquire about the sibling caregiver’s well-being and offer support and resources when appropriate.
• Advocate for services for siblings: Mental health professionals can help create local programs for siblings, invite them to sit on advisory boards and participate in creating policies regarding families, and advocate for increased funding to programs and other resources that service siblings.

Meyer quotes a sister who wrote, “We will become caregivers for our siblings when our parents no longer can. Anyone interested in the welfare of people with disabilities ought to be interested in us.”

References

1. United States Census Bureau. American Fact Finder. Disability characteristics: 2011 American Community Survey 1-year estimates. https://www.cdc.gov/ncbddd/disabilityandhealth/documents/2011-american-fact-finder-report-s1810.pdf. Accessed June 9, 2017.
2. United States Census Bureau. School-aged children with disabilities in US Metropolitan statistical areas: 2010. https://www.census.gov/prod/2011pubs/acsbr10-12.pdf. Accessed June 9, 2017.
3. Giallo R, Gavidia-Payne S, Minett B, Kappor A. Sibling voices: the self-reported mental health of siblings of children with a disability. Clinical Psychologist. 2012;16:36-43. doi: 10.1111/j.1742-9552.2011.00035.x
4. Goudie A, Havercamp S, Jamieson B, Sahr T. Assessing functional impairment in siblings living with children with disability. Pediatrics. 2013;132(2):e476-e483. doi: 10.1542/peds.2013-0644
5. Milevsky A. Siblings of children with disabilities. In: Milevsky, A. Siblings Issues in Therapy: Research and Practice with Children, Adolescents and Adults. London: Palgrave Macmillan UK; 2016:94-109.
6. Massachusetts Developmental Disabilities Network. Supporting siblings of children with mental health needs. http://www.mass.gov/anf/docs/mddc/supporting-siblings-2012.pdf. Accessed June 2, 2017.
7. Howard BJ. Supporting siblings of children with special needs. Pediatric News. November 16, 2015. https://www.psychiatryadvisor.com/home/topics/addiction/adult-children-of-alcoholics-healing-lifelong-scars/. June 1, 2017.