September 25, 2009

Disabilities study to focus on parents’ stress

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Elisabeth Dykens, Ph.D.

Disabilities study to focus on parents’ stress

Elisabeth Dykens, Ph.D., Vanderbilt Kennedy Center director, has received a two-year Challenge Grant from the National Institutes of Health to compare stress management techniques in parents raising children with disabilities.

Part of the federal stimulus package, the NIH has allotted $200 million to the Challenge Grants, which provide “jumpstart funds” to projects in biomedical and behavioral research.

The grants have been particularly competitive. More than 21,000 applications have been received and only 3 percent are expected to be funded.

As one of the only recipients at Vanderbilt, Dykens said she feels an urgency to get started as soon as possible.

“There are decades and decades of work describing remarkably high levels of stress, anxiety and depression in parents of children with disabilities, and we know that a stressed parent is a less-effective parent.

“Yet there are no evidence-based interventions to help these at-risk parents. I was itching to do something about it instead of just continuing to describe it,” she said.

To evaluate the best methods for managing stress, 400 parents will be randomly assigned to either a conventional support group or one that uses a technique called Mindfulness-Based Stress Reduction (MBSR).

“Mindfulness is simply the practice of being aware of what is going on in the present moment in a nonjudgmental way,” Dykens said. “MBSR teaches techniques that involve breathing, movement and awareness, which have proven very effective in a variety of patients and people in general. We are fortunate to have leaders in MBSR at the Vanderbilt Center for Integrative Health, directed by Roy Elam (M.D.), and I am excited to be working with them on this grant.”

Parents will be followed closely for six weeks as they complete the courses, and then will return for booster sessions for six months. Data will be collected on health, psychological states and biomarkers of stress.

Dykens hopes to recruit a diverse cohort of mothers and fathers from a range of ethnicities.

The study is open to parents of children of any age, across all types of disabilities, such as autism spectrum disorder, Down syndrome, fragile X syndrome or cerebral palsy.

Challenge Grants mandate that the unemployed be hired in some way, and Dykens will bring in five parents to run the support groups.

“This grant will hire mothers and fathers, give them proper training, and help them to provide intervention to their fellow parents,” she said.

“This is a really good fit for the disability field. As opposed to professionals, parent-to-parent support and information-sharing is the glue that holds disability communities together. Parents can hear from other parents who know what it is like.”

The major impetus for this study was the sheer number of parents raising a child with a disability.

“The CDC tells us that one in five children has a developmental disability, and that to me is a staggering number,” Dykens said.

“A lot of research has focused on helping the child learn and grow, but there are few interventions focused on the larger family system. Once parents are less stressed, there will be more relaxed households and better outcomes for children.”