CONTACT: BONNIE MCINTOSH
101 Nursing Building
UI College of Nursing
Iowa City IA 52242
Release: Jan. 10, 2002
Impact of Huntington's disease on family members to be studied by UI nursing
CITY, Iowa -- Since 1993 it has been possible to identify a genetic marker
that predicts Huntington's disease. Individuals can now be identified as carriers
of the marker before they show symptoms of the disease. Researchers at the
University of Iowa College of Nursing have received funding to study what
impact pre-symptomatic diagnosis of Huntington's has on the family of those
Janet K. Williams, Ph.D., UI associate professor of nursing, has received
nearly $1.5 million from the National Institute of Nursing Research to study
the effects this identification on a family member's own emotional and functional
health status, perceptions of health problems, and resources and strategies
for managing these problems. In doing so, the aim is to document family members'
needs so they can be equipped to assist a loved one before he or she becomes
As researchers learn more about genetics and are able to identify genetic
markers for additional diseases, more people deal with the possibility of
knowing they are predisposed to specific illnesses. When this happens, parents,
siblings, children and spouses have a role.
"We know that family members want to help their relative remain healthy,
yet they do not always know how to do that. Furthermore, some family members
have concerns of their own regarding how to tell others in the family about
the genetic information," Williams said. "This four-year grant will
help to identify ways that family members try to solve health problems and
how health care providers, including nurses, can help them anticipate and
manage problems that are likely to occur."
Study participants will be identified through the recently funded UI Health
Care study known as PREDICT-HD (Neurobiological Predictors of Huntington's
Disease) that is focusing on possible pre-symptomatic treatments for people
who carry the genetic markers for Huntington's disease. PREDICT-HD is being
led by Jane Paulsen, Ph.D., UI professor of psychiatry, neurology, and psychology.
Williams is the past president of the International Society of Nurses in
Genetics and is a consultant on numerous national projects to promote education
of nurses regarding genetics. Williams also conducts research on education
of nurses on genetic topics, and she has collaborated on the development of
a monograph to educate school nurses on issues for children with specific
genetic and growth disorders.