title: Family risk and related education and counseling needs: perceptions of adults with bipolar disorder and siblings of adults with bipolar disorder.
abstract: Genetics and mental health professionals increasingly provide education and counseling related to risk for psychiatric illness, but there is insufficient evidence about patient perceptions and needs to guide such interventions. Affected individuals and relatives may perceive increased family risk and have interest in genetic education and counseling. Our objectives were to explore perceptions of family vulnerability, perceived control, and coping strategies related to familial risk and needs from genetic counseling. Our methods included conducting semi-structured interviews (n = 48) with individuals with bipolar disorder (BPD) and unaffected siblings. Content analysis generated descriptive data that provide guidance for clinical interventions and themes to evaluate in future studies. The results showed that participants perceived increased personal and family risk, attributing BPD to genes and family environment. Causal attributions were often uncertain and at times inconsistent. Participants wished to modify psychiatric risk to relatives, but were uncertain how to do so; despite the uncertainty, most parents reported risk-modification efforts. Efforts to cope with family vulnerability included monitoring and cognitive distancing. Participants endorsed the usefulness of education and psychological support, but described more ambivalence about receiving risk assessment. Educational and supportive interventions around family risk for BPD should focus on perceptions of cause and vulnerability, reproductive decision-making, and early intervention and risk modification in young relatives. Psychological support is an important component. Providers should evaluate patient coping strategies, which could facilitate or hinder genetic counseling interventions, and should not assume interest in quantitative risk assessment.
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland 20892-2073, USA. hpeay@mail.nih.gov
authors.forename: H L
authors.initials: HL
authors.lastname: Peay
authors.forename: G W
authors.initials: GW
authors.lastname: Hooker
authors.forename: L
authors.initials: L
authors.lastname: Kassem
authors.forename: B B
authors.initials: BB
authors.lastname: Biesecker
mesh_terms: D000328:Adult; D001714:Bipolar Disorder / Q000235:genetics* / Q000523:psychology; D005190:Family / Q000523:psychology*; D005817:Genetic Counseling / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D010353:Patient Education as Topic; D018570:Risk Assessment; D035781:Siblings / Q000523:psychology*