Ann Kaiser, Ph.D., Director of Families Research Program
Robert Hodapp, Ph.D., Associate Director of Families Research Program

Family Research is a newly organized program reflecting the importance of issues related to families of person with disabilities. The program will examine the impact of developmental disabilities on individual family members as well as the effects of families on the persons with disabilities, with an emphasis on studies of siblings and their relationships over time, across the lifespan.

The initiative for developing this program derives from several sources:

(a) the critical need for information about siblings and families of persons with disabilities over the life span;

(b) the existing foundation of ongoing KC research on families,

(c) the unique opportunity to link research on siblings and families to our other programs of basic and applied research in the KC; and

(d) the NICHD-MRDD research priority on understanding the influences of families in the lives of persons with disabilities.

At present, more than 526,000 adults with disabilities are older than 60 years of age, and that number is expected to triple—to over 1.5 million—by 2030. Most of these adults are in some way cared for or supported by their siblings. Although some research exists on sibling relationships in early to middle childhood, much less is known about the nature of adult sibling relationships and the factors that contribute to positive relationships and developmental outcomes in adulthood.

National Sibling Research Consortium

Some of the core members of this newly formatulated program and their projects are listed below:

Family Research Projects

Ann Kaiser - parents and siblings as interventionists, promoting communication in young children with mental retardation or other developmental disabilities

Bob Hodapp—Parental reactions to children with different genetic disorders (DS, PWS, WS)

Elisabeth Dykens—Parental coping related to etiology-related profiles or maladaptive behaviors

Judy Garber—Psych & Human Development—Relation of family environment and adolescent depression; effect on children of parents receiving treatment for depression

Melanie Lutenbacher—Nursing—improved service delivery to women and children; abused women; abusive parenting; psychosocial factors related to differing parent attitudes among low-income mothers

Robin McWilliam—Pediatrics—family-focused early intervention; professional-family relationships in early intervention practice

James Sutcliffe and Jonathan Haines— Center for Human Genetics Research, family-based genetic studies of autism spectrum disorders

Bruce Compas—Psychology & Human Development—coping and self-regulation in response to stress and adversity during childhood; interactions between mothers and daughters coping with breast cancer.; children-adolescents coping with effects of parental depression

Lynn S. Walker—Pediatrics—children’s chronic pain syndromes; adjustment in families of children with chronic illness or disability

Laurie Greco – Pediatrics – anxiety disorder in children with chronic illnesses; impact of chronic illnesses on families

Len Bickman—VIPPS—Mental health services for children and adolescents; effects on family of living with a child with severe emotional disorders

David Cole—Psych—Parent and child perceptions of depression; mediators-moderators over time

Mary Jo Gilmer—Nursing--Care of children with life-threatening conditions

Wendy Stone—Pediatrics—Parent interview for the early diagnosis of autism

Ellen Wright Clayton—Pediatrics & Law—genetics and public health policy; public health’s role in newborn screening and prenatal diagnoses

Kathy Hoover-Dempsey—Psychology & Human Development—Parental involvement in children’s schooling; intervention programs by teachers to increase parental involvement

Paul Yoder—Special Ed—Effects of maternal responsivity on young children’s communication