title: Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups.
abstract: Dramatic advances in cancer genetics and identification of germline mutations in cancer genes such as BRCA1 and BRCA2 have led to new options in genetic risk assessment for families with histories of breast and ovarian cancer. However, little research has been carried out with individuals and their families regarding how cancer risk information is communicated within families and factors that may affect individuals and family members making informed decisions about their health. This study explored participants' knowledge of cancer risk, their perceptions and concerns regarding inherited cancer risk information, family communication patterns, and factors that may affect their decision to learn about inherited cancer risk in their families. Nine focus groups of family dyads were conducted (N=39) consisting of breast or ovarian cancer patients and close female relatives. All transcribed interviews were analyzed using qualitative software. Key findings showed diversity in how families communicated and made decisions about their health, persistent worry for their families, lack of knowledge about inherited cancer, vigilance in watching their health, and barriers present in communicating about genetic risk. Results from this study support inclusion of family members in addressing inherited cancer risk information and contextual family factors critical to consider in potentially high risk families.
authors.affiliation: University of Detroit Mercy, 4001 W. McNichols Road, MI 48221-0900, USA. mellonsk@udmercy.edu
authors.forename: Suzanne
authors.initials: S
authors.lastname: Mellon
authors.forename: Lisa
authors.initials: L
authors.lastname: Berry-Bobovski
authors.forename: Robin
authors.initials: R
authors.lastname: Gold
authors.forename: Nancy
authors.initials: N
authors.lastname: Levin
authors.forename: Michael A
authors.initials: MA
authors.lastname: Tainsky
mesh_terms: D001294:Attitude to Health; D001943:Breast Neoplasms / Q000453:epidemiology / Q000235:genetics / Q000523:psychology; D003142:Communication; D003657:Decision Making; D003710:Demography; D030881:Disclosure; D005190:Family; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006801:Humans; D007398:Interpersonal Relations; D010051:Ovarian Neoplasms / Q000453:epidemiology / Q000235:genetics / Q000523:psychology; D010342:Patient Acceptance of Health Care; D017354:Point Mutation / Q000235:genetics; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*