Perspectives of Individuals With Bipolar Disorder and Siblings of Individuals With Bipolar Disorder; A Telephone Interview Study

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.

- INCLUSION CRITERIA:

Individuals over 18 years of age who have been diagnosed with bipolar disorder (per their
own report; no screening will be performed), and/or the adult siblings of affected
individuals. Participants do not have to be sibling pairs, i.e., an affected individual
may be included without the participation of their unaffected sibling, and visa versa.
Participants must be able to speak English fluently.

EXCLUSION CRITERIA:

Those under 18 years of age will not be included. First-degree relatives other than full
siblings will not be included. If a participant is symptomatic to the point that the
interview is compromised, as determined by the PI who has considerable experience
counseling affected individuals, the PI will end the interview and any data collected will
be destroyed. If possible, the interview will be rescheduled. We will encourage
symptomatic individuals to seek care from their mental health provider, or we will make a
referral if the individual does not have a provider.