In 2013, OAR’s Board of Directors authorized funding for seven new applied autism research studies in 2014. This additional $210,000 in research grants brought the total funds awarded by OAR to over $3 million since its first grants in January 2003. This review is the last in a series of seven that will appear in The OARacle before the next grants are awarded in November.
Whether it’s problematic behaviors or the seemingly endless cycle of therapy and appointments, autism can cause stress on every member of the family, including the siblings
of children (and adults) with autism. Offering support to those siblings can strengthen the sibling relationship, enabling them to play a more active role in life of their family member on the spectrum. To date, however, there has not been enough research to evaluate the benefits of providing support for siblings.
Emily A. Jones, Ph.D., Queens College, City University of New York, hopes to change that.Her OAR-funded study is assessing the effects of a sibling support group. The study is built on the results of three years of research developing the Support and Skills Program, an inclusive program for siblings and children with autism focused on building quality relationships between siblings.
The researchers used direct observational measures of sibling interactions along with self and parent report measures to determine how effective the program is. Preliminary pre-post comparisons with 11 sibling pairs showed positive effects on:
This new study will provide another opportunity to expand the evidence base for sibling support groups.
The researchers will recruit 80 sibling pairs to participate in the study with the children with autism ranging in age from 4 to 15 and the siblings from 7 to 15. The participants will be randomly assigned to either attend the Support and Skills Program or an attention-only control group.
The program consists of weekly two-hour sessions over the span of several months. Children with autism receive one-to-one instruction while siblings participate in a support group and then all children engage in supported recreation activities.
On the first day, children with autism and their siblings will be observed playing games together. Siblings will fill out self-assessments about their relationship with their brother or sister on the spectrum, and their parents will fill out a child behavior checklist, sibling behavior inventory, and a stress and resources questionnaire. To determine attitude and behavioral changes, those measures will be repeated at the end of the 10-week session and then one and six months later.
For the first hour of each session, children with autism receive one-to-one instruction in social, communication, and leisure skills. At the same time, the siblings attend a support group run by a counselor. For the second hour, all children participate in an inclusive recreation period with volunteers continuing to provide support to the children with autism.
During each support session, siblings meet with a counselor and engage in activities dealing with a specific topic (e.g., identifying people who can provide support, discussing information about autism, and dealing with frustrations). Each sibling receives a workbook that includes each week’s topic and a contact list for the group members to facilitate a peer network. Homework assignments help siblings to “translate” what they learned to the home environment and communicate with parents what they have done each week.
The siblings who participate in the attention-only control group will participate in similar activities, but without the therapeutic component embedded in the sibling support group.
Children in both groups will attend two-hour “booster sessions” at one month, three months, and six months. Booster sessions will include some repetition of program material as well as new material as new issues and concerns arise.
Given the absence of well-controlled sibling support research, it will be important to evaluate whether many of the perceived benefits result from the program’s therapeutic components or if they are benefits of receiving attention by participating in the program. The researchers expect positive effects on sibling knowledge, adjustment, and coping, and the sibling relationship. They also expect that booster sessions will facilitate maintenance of changes at 6 months.
If the sibling support group produces better outcomes, this means that quality, not quantity, of attention is the active treatment component. However, if the attention-only control group produces better outcomes, then quantity is the active component.
This comparison is an important step toward designing future sibling support programs that offer the most beneficial support possible. The study will also examine whether booster sessions are a good method to maintain changes achieved through the program.
The sibling support treatment manual, which was developed for the Support and Skills Program, will allow the researchers to disseminate the program to agencies and schools that can provide the program to the children and families they serve.
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