Learning disabilities: Kids and families struggle beyond the academics

"At least half the time when I give feedback from an evaluation, a parent becomes teary," says neuropsychologist and study leader Deborah Waber, PhD, who directs the Learning Disabilities Program at Boston Children's Hospital. "The effect on families is not trivial, and it's been under-appreciated. It's always good to ask families about stress and anxiety if they report concerns about academics."

Waber and her colleagues developed a survey-based screening instrument to gauge the effects of learning problems on the child's and family's quality of life. They first sent a 35-question survey to 151 families whose child had been referred to them for evaluation of learning disabilities. They then shortened the survey to 15 questions and sent it to families in a single lower- to middle-income school district in the greater Boston area.

Of the 325 parents or guardians who completed the revised survey, 93 had children who had been identified as having learning problems and were receiving special education support on formal Individualized Education Plans. The remaining 232 had children in general education.

Survey questions focused on such issues as parents' anxiety about their children, children's anxiety and frustration over school work, children taking a long time to complete homework, having to limit family activities because of homework and family stress caused by the child's learning problems.

Psychological fallout

The two groups showed a dramatic difference. Compared with the general education group, parents of children with learning problems reported significantly more quality-of-life problems related to academics, for both the child and the family. Quality-of-life problems fell in the "at risk" or "clinically significant" range in half of the learning problems group, versus only 15 percent of the general education group.

The quality-of-life impacts of learning problems were greater for middle-school-age children than younger elementary-age children, and were greater in boys than girls, with the gender difference widening in the older grades. However, families of children with and without learning problems gave relatively similar ratings to teachers and school support systems, suggesting that they did not blame shortcomings of the school for the child/family distress.

Waber and her colleagues now routinely give the survey to parents whose children are being evaluated in the Learning Disabilities Program. They plan to follow up a year later to see whether quality of life has improved and, if so, to what extent the improvement is related to how the schools responded to the evaluation. Since the survey is easy to administer through an online link, Waber hopes to see others adopt it.

"We hope its use will make schools, other educators and pediatricians more aware of the distress children with learning problems and their families may be experiencing and take steps to address it," Waber says.

The study was supported by the Program for Patient Safety and Quality at Boston Children's Hospital and an anonymous gift. Coauthors were Ellen C. Boiselle, PhD, Peter W. Forbes, MS, Jonathan M. Girard, BA, and Georgios D. Sideridis, PhD of Boston Children's Hospital.