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| Iowa Investigator - Dr. Janet Williams |
The focus of my research is the psychosocial impact of having a genetic condition, or learning of one’s likelihood to develop the disorder.
The first predictive genetic test to become available was the test for Huntington Disease. This is a progressively debilitating neurodegenerative disease that is inherited in an autosomal dominant manner. Other tests have subsequently been developed, many for familial cancers. I would like to know how to anticipate potential harms, and to assist families to receive the potential benefits of knowing one’s likelihood of becoming ill in the future. I also want to know how health care providers can support family who care for persons with inherited diseases, throughout the course of their illnesses. With the availability of predictive testing, we are learning that changes in family caregiver responsibilities occur even before classic symptoms of a disease appear. In some families, teens become their parents’ caregiver. I want to know how this situation is affecting teens’ well-being when they take on caregiving responsibilities usually provided by adults. What led to the development of interest in this topic? At the time the first predictive test was developed, I was a practicing advanced practice genetics nurse. This test identifies whether a healthy person would develop Huntington Disease in the future. I believed that the potential for benefits as well as for harms was not fully anticipated for people who were faced with the decision to have this test. What impact do you predict coming from this research? This research has provided new information about the stresses on adults and teens in families where a person has, or will develop Huntington disease. This information is needed by health care providers to develop better ways to identify symptoms in the earliest stages of the disease, as well as to assess risks for caregiver stress and burden on other family members, including the teens. This research provides important information to families regarding stresses of caregiving that may be reduced when family and health care providers recognize them. How does the research integrate into education/practice/service? Health care improvements start with recognition of problems, and can be accomplished by matching patient and family problems with effective interventions. This research contributes information about potential early symptoms of HD in people who have a predictive test, and about caregiver stresses on teen and adult family members. This information is useful in education of health care providers, in developing better ways to assess and treat clinical symptoms and caregiver problems. Iowa Investigator Archives March 28, 2007 |
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