Research Related to Siblings of Individuals with Disabilities

Prepared in Collaboration with the Sibling Leadership Network

Tamar Heller and Ann Kaiser

For the Research Work Group

White paper can be downloaded here.

Purpose

The purpose of this White Paper is to provide a summary of key research findings on siblings of individuals with disabilities and an initial set of guidelines and recommendations to guide new research in this area. It emanates from the research work group at the Sibling Leadership Network Conference held in Washington D.C. on November 9 and 10, 2007. The research work group drew up principles that should guide research on siblings, identified gaps in the research, and proposed recommendations and action steps for moving a research agenda on siblings forward.

Principles Guiding Research

  1. Siblings with and without disabilities should be involved in all phases of research from conceptualization to dissemination. It is important to get the perspectives of siblings both with and without disabilities. They are also the persons who can best identify strategies for getting the word out to families and policymakers.
  2. Research should be inclusive, representative of diversity, and culturally competent. Most of the research focuses on convenience samples lacking minority families, as it is often difficult to find siblings. We need to find ways to reach these siblings.
  3. There is a place for both description and intervention research, using the range of state of the art research methods. To date most of the research has been descriptive with very few intervention studies. Both types of research are needed to help identify the issues and to test models of providing support to siblings.
  4. Research on perspectives and outcomes for siblings with and without disabilities is of interest. Siblings with and without disabilities may have a very different perspective on family relationships and supports needed. They may also have very different perspectives than parents, who are most often the family members targeted in research studies on families of people with developmental disabilities.
  5. Research should address lifespan issues and critical contexts for their families. Siblings play varying roles and face varying issues at different life phases and at transition points. As parents age the roles and responsibilities of siblings in supporting their siblings with a disability likely increase.

Summary of Sibling Research to Date

Siblings provide the most long-lasting relationships for adults with developmental disabilities. Over 30 years of research on siblings has provided key information about the effects of being a brother or sister of an individual with a disability. The research results are mixed, with some noting more behavior problems and depression and others failing to find such differences or finding positive impacts (Rossiter & Sharpe, 2001; Stoneman, 2006). Generally siblings across the lifespan often regard their experiences as a sibling positively. Siblings report affection and positive regard for their brothers and sisters with disabilities, attribute high levels of empathy and altruism as deriving from their relationship with sibling, and on the whole, appear to be as well adjusted and successful as individual who have typically developing brothers and sisters.

Siblings who have brothers or sisters with mental health conditions, with autism, or with other severe behavior problems associated with their disability are more likely to report problems in the early relationship and to exhibit symptoms of depression or less positive adjustment in later life (Orsmond & Seltzer, 2007). While sibling relationships may be more asymmetrical due to the abilities of the brother or sister with disability in childhood and later on, the resulting differences are somewhat predictable and seldom regarded by typical siblings as negative.

The quality of the sibling relationship and level of involvement of the typical sibling is related to childhood experiences and as well as to gender of each member of the sibling pair, the relative ages of the siblings, and continued geographic proximity. Many siblings indicate they will assume primary care for their brother or sister with disabilities at some point during the siblings’ lifetime, although co-residence of siblings occurs for a minority of adult siblings (Greenberg, Seltzer, Orsmond, & Krauss, 1999). With the aging of the population siblings are likely to assume greater roles, including co-residence, as individuals with developmental disabilities outlive their parents (Freedman, Krauss, & Seltzer, 1997). Over 75% of adults with developmental disabilities in the U.S. live at home with families and over 25% of their family caregivers (716,212) are over the age of 60 years (Braddock, Hemp, & Rizzolo, 2008). Yet many families have not done planning or discussed future care with siblings (Heller & Kramer, 2006).

Relatively little is known about family, cultural, and psychological factors contributing to individual differences in sibling relationships and sibling outcomes. Understanding what allows siblings to cope and do well and what constrains sibling relationships and sibling well-being requires research. Almost all findings about sibling relationships are based on reports of the typical sibling or the parent. The views of the sibling with disabilities are notably absent. This is especially problematic in considering adult sibling relationships where there are few studies examining the relationship from the perspective of both siblings. There is a great need for a lifespan perspective on sibling relationships, capturing the perspectives of both siblings.

The relatively limited research on support provided to siblings during childhood suggests that information, meeting other siblings, and having opportunities to process concerns about family and sibling issues can have long-term positive benefits. There are relatively few studies of interventions at any point in the lifespan designed to enhance positive outcomes for the sibling with a disability, the typical sibling or the family as a whole. The need to describe and promote healthy, positive sibling relationships in adulthood is primary.

Key Research Recommendations

The research work group developed the following recommendations for future research on siblings of individuals with developmental disabilities:

  1. Make findings from past research studies easily accessible to families, service providers and policy makers.
  2. Include the voice of the sibling with disability in research
    1. How do siblings with disabilities experience their relationships with their brothers and sisters across the lifespan?
    2. How could these relationships be strengthened from the perspective of the sibling with disabilities?
  3. Examine the contributions that individuals with disabilities make to the everyday lives, and longer term health and psychological well-being of typical sibling
    1. From the perspective of the typical sibling
    2. From the perspective of the sibling with disabilities
  4. Focus on how sibling relationships, roles and experiences affect the sibling with a disability.
    1. Specifically identify positive effects of the sibling relationship on everyday lives, and longer term health and psychological well- being outcomes for sibs with disabilities across the lifespan.
    2. Determine how sibling involvement may affect community participation and inclusion, self-determination, employment of the sibling with disabilities.
  5. Broaden the scope of sibling research during adulthood.
    1. Study siblings across the adult lifespan to better understand the course of sibling relationships.
    2. Focus on key transition points where siblings may play key roles in the lives of their brothers or sisters with disabilities.
      1. Leaving school
      2. Living outside the home
      3. Aging or ill parents
      4. Transitions in responsibility for siblings with disabilities
      5. Adult life transitions for both siblings around health, living locations, and end of life.
    3. Involve all siblings, not just those who self-identify as the most involved to better understand how siblings are affected and how they contribute to the lives of their brothers and sisters.
  6. Develop and study interventions that are designed to improve the lives of individuals with disabilities and their siblings.
    1. Early intervention
      1. To help parents address and improve sibling problem behavior at home that may affect the sibling
      2. To help parents in parenting both siblings
      3. To build communication and affective relationships between siblings
      4. To lay a foundation for self-determination by individuals with disabilities
      5. To support typical siblings with information about their sibling, social support for themselves, and early involvement in futures planning.
    2. Early transitions
    3. Planning for the future
    4. Later life transitions
  7. Study families as a basis for understanding sibling relationships over time.
    1. Risk and protective factors related to sibling outcomes and relationships
    2. Individual differences in family style, adjustment, view of disability
    3. Cultural and social economic contexts
    4. Parenting

References

Braddock, D., Hemp, R., & Rizzolo, M. (2008). The state of the states in developmental disabilities. Boulder, CO: Coleman Institute for Cognitive Disabilities, University of Colorado.

Freedman, R., Krauss, M., & Seltzer, M. (1997). Aging parents’ residential plans for adults with mental retardation. Mental Retardation, 35(2), 114-123.

Greenberg, J., Seltzer, M., Orsmond, G., & Krauss, M. (1999). Siblings of adults with Mental illness or mental retardation: Current involvement and expectation of future caregiving. Psychiatric Services, 50(9), 1214-1219.

Heller, T. & Kramer, J. (2006). Involvement of adult siblings of people with developmental disabilities in future planning. Disability Research Brief, 2. Chicago: Institute on Disability and Human Development, University of Illinois at Chicago.

Orsmond, G. I. & Seltzer, M.M. (2007). Siblings of individuals with autism spectrum disorders across the life course. Mental Retardation and Developmental Disabilities Research Reviews, 13, 313-320.

Rossiter, L., & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies, 10, 65-84.

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