Bipolar Clinical Trial
Official title:
Seeking Genetic Counseling: What Motivates Families At Risk For Psychiatric Illness?
This study will examine those who will seek and those who are most likely to benefit from
genetic counseling for psychiatric disorders. It will identify themes related to perceived
risks, benefits, and possible motivations for seeking genetic counseling among families
affected by bipolar disorder. It will then use those themes to generate a starting point for
a framework to guide further research and to improve genetics services as they are currently
practiced.
Adults with bipolar disorder and the adult siblings of people with bipolar disorder are
eligible for this study. In a 60- to 90-minute telephone interview, participants are asked
questions related to their thoughts about the causes of bipolar disorder, their experiences
with the illness, their concerns about the disorder occurring again in their families, and
their feelings about the value of discussing these issues with health care professionals.
They also are asked questions about the mental health of their close family members and their
own mental health.
This study aims to examine through the use of qualitative telephone interviews who will seek,
and who is most likely to benefit from, genetic counseling for psychiatric disorders. The
specific aims are to identify themes related to perceived risks, benefits, and possible
motivations for seeking genetic counseling among families affected by bipolar disorder; to
use those themes to generate a starting point for a conceptual framework to guide further
research; and to use those themes to improve clinical genetics services currently in
practice.
None of the few available studies on genetics and bipolar disorder evaluate interest in
genetic services in the absence of genetic testing (e.g., family-history-based risk
assessment, education about etiology, psychological support) even though those elements will
continue to be relevant even if genetic testing becomes available. Only one study asked any
questions about psychiatric genetic counseling in the absence of testing-a study on
schizophrenia in which one such question was posed. In most of the available literature, the
focus is on highly predictive testing scenarios that are not relevant in current practice,
and may never be relevant. In addition, most studies test the researchers' preconceived
notions of risks and benefits, without allowing participant input. More research will
facilitate the integration of genetic counseling for psychiatric disorders into the genetics
clinic.
This is a qualitative study using telephone interviews that will be taped and transcribed. We
plan to interview 15 to 25 adults affected with bipolar disorder and 15 to 25 unaffected
adult siblings. We will use a semi-structured interview guide that will allow the integration
of new elements and the modification of existing elements. We will use data reduction and
coding to synthesize the most important themes.
This study will result in themes that can be tested in a larger, more representative sample,
allowing us to test hypotheses about interest in psychiatric genetic counseling. This study
also will provide preliminary data about anticipating, through the use of realistic
scenarios, the point at which individuals are more likely to embrace psychiatric genetic
counseling; and beginning to understand, in a broader perspective, what may increase or
decrease interest in genetic counseling and risk assessment based on family history for
complex disorders. More immediately, this study will provide a description of the experience
of living with risk in the family that should be of interest to genetics professionals.
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