title: Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study.
abstract: OBJECTIVE
  Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure might affect their child's future decision-making.
  
  
  METHODS
  This study explored the communication of genetic risk information in families using qualitative semi-structured interviews conducted with parents, children (7-11years) and young people (12-18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded transcripts producing four themes; family communication, perception of cancer risks, risk management strategies and impact of genetic risk communication in children and young people's decision making.
  
  
  RESULTS
  Twenty-seven individuals from 11 families took part, recruited through purposive sampling techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their children's future. As a result, parents with hereditary breast cancer disclosed limited information about the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery on body image. This had implications to children and young people's perceptions of prophylactic procedures, which were already influenced by cultural understandings of the 'desirable body' and increasing acceptance and proliferation cosmetic surgery.
  
  
  CONCLUSIONS
  Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people's understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwifery, Kings College London, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK. Electronic address: emma.rowland@kcl.ac.uk.
authors.forename: Emma
authors.initials: E
authors.lastname: Rowland
authors.affiliation: Primary Care Clinical Sciences, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK. Electronic address: gill-plum@yahoo.co.uk.
authors.forename: Gill
authors.initials: G
authors.lastname: Plumridge
authors.affiliation: West Midlands Regional Genetics Unit, Birmingham Women's Hospital, Mendelsohn Way, Edgbaston, Birmingham B15 2TG, UK. Electronic address: anna-marie.considine@bwhct.nhs.uk.
authors.forename: Anna-Marie
authors.initials: AM
authors.lastname: Considine
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwifery, Kings College London, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK. Electronic address: alison.metcalfe@kcl.ac.uk.
authors.forename: Alison
authors.initials: A
authors.lastname: Metcalfe
mesh_terms: D000293:Adolescent; D000328:Adult; D001943:Breast Neoplasms / Q000523:psychology*; D002648:Child; D003142:Communication; D003657:Decision Making; D005260:Female; D019398:Genes, BRCA1; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012306:Risk
keywords: BRCA; Breast cancer; Children; Communication; Genetic risk; Genetic testing; Mastectomy; Young people