Collaborative Family Study examines how families affect development of children with intellectual disabilities

As an inexperienced new mother, Sylvia Turner ensured that her daughter Samantha had every support she needed to develop into a healthy and normal child.

Concerned that her daughter was developing language problems, Turner sought help from the Regional Center in Los Angeles to examine Samantha’s language ability. The center suggested speech therapy to improve Samantha’s pronunciation problems, Turner said.

Today, nearly a decade later, 13-year-old Samantha has grown far beyond the expectations for a young adolescent. As it turned out, Samantha’s speech delays resulted from her speaking Spanish at home and English at childcare, Turner added.

Samantha’s Spanish developed well, and she has been classified as gifted in English and currently reads the language at the level of a twelfth grader in the ninth month. She is soon to be classified as gifted in mathematics, too.

Turner said her concerns about her daughter’s possible developmental delays have since been put to rest.

At the same time Samantha began speech therapy, Turner and her husband, both UCLA alumni, learned about UCLA and UC Riverside’s Collaborative Family Study.

The Collaborative Family Study, based at both universities, is a longitudinal study funded by the National Institute of Child Health and Human Development that began about a decade ago. The study investigates why the rate of mental disorder is three times as high in children and adolescents with intellectual disability than in children with typical cognitive development, said Bruce Baker, the co-principal investigator of the study and chair of the UCLA department of psychology. The study examines families with children who are typically developing and children who have intellectual disabilities, Baker said.

Since the study’s start, researchers have been assessing the development of emotional and behavioral issues in children during key transition points.

The preschool period is an important time in development because there are many developmental changes that occur when children are young, said Camie Neece, an advanced clinical psychology doctoral student at UCLA who is involved with the study.

In the last decade, the study’s researchers have followed the same families as their child developed from three years of age. As one of the 180 families that have remained in the study, Turner’s family has participated ever since they learned about it.

An additional five years of funding from the National Institute of Child Health and Human Development has enabled researchers to move onto the second phase of the study, in which they will examine the children as they enter adolescence, Baker said.

The study is the only longitudinal study in the country that examines mental health problems in children with intellectual disability, he added. The study is also unique because it examines the family environment and how it affects child development, Baker said.

“We have been funded to look primarily at families, and how the family environment might be influential,” Baker said.

Prior to the Collaborative Family Study, other studies estimated that the prevalence of mental disorders among intellectually disabled people was high. However, these large population-based studies often did not examine the specific disorders that emerged, when they developed, how stable they were over time or what their predictors were, Neece said.

At the start of the Collaborative Family Study, researchers knew that families were likely to have chronic stress if they had a child with autism or any type of disability. Compared to typically developing children, intellectually delayed children are more prone to have problem behaviors in part because of their inability to regulate emotions and understand relationships properly, he said.

Over time, these children with high levels of problem behaviors at three years of age are more likely at ages five through nine to meet criteria for actual clinical diagnosis of mental disorders.

The study’s researchers have since found that it is actually children’s problem behaviors, not their intellectual disabilities, which cause stress in parents.

In fact, families with typically developing children are likely to stress just as much if their children have problem behaviors, Baker said.

Findings of the study suggest an important reciprocal effect: When parents are more stressed, their children’s problem behaviors increase, he added.

As the children enter adolescence, the study will examine issues such as the influence of peers, the role of pubertal development and school experiences.

The study is currently recruiting families with children who are 12 years of age and who have either typical development or intellectual disability or autism. Latino families are particularly encouraged to participate. Latino families, as compared to Anglo families, have displayed a more positive perspective on parenting when a child has a disability than when a child doesn’t, Baker said.

The family assessments are about seven to nine hours over a two-year period. In that time period, study participants will make two visits to the research center at either UCLA or UC Riverside, where mothers and children will be interviewed and complete questionnaire measures. The children will also take an intelligence test and perform problem-solving tasks. Families will receive $200 for their participation in the study.

Baker said that some parents have derived benefit from the study assessment because they can discuss their child confidentially and without judgment.

Neece said her interest in the family environment and in those with mental health problems drew her to work in the study. As more research is done, the study has the potential to help professionals understand where to intervene and help those with mental health problems, she said. She added that the research from the study could eventually help maximize the potentials of intellectually disabled children and allow them to live independently.

“Everybody who comes into the lab has a life goal to try to help kids’ families, and most of us have spent a lot of our life doing that, and so this study happens not to be an intervention study,” Baker said. “But “¦ it has implications for intervention, otherwise I don’t think we’d be interested in doing it.”

Families interested in participating in the Collaborative Family Study can e-mail Sandee Orozco at [email protected].