When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals' views regarding disclosure of BRCA genetic cancer risk.

作者: Alison Luk Young , Phyllis N Butow , Katherine M Tucker , Claire E Wakefield , Emma Healey

DOI: 10.1136/BMJOPEN-2019-033127

关键词: MedicineDuty to warnSpecialtyRural areaMental healthFocus groupQualitative researchGenetic testingFamily medicineMaturity (psychological)

摘要: Objectives Disclosure of a hereditary condition in the family poses notable challenges for patients who often seek assistance genetic health professionals (GHPs). This study aimed to investigate GHPs’ opinions about ideal time disclosure offspring and their responsibility at-risk relatives. Design Cross-sectional qualitative study. Setting Genetic familial cancer clinics related mostly secondary tertiary care hospitals centres urban, regional rural areas across all states Australia. Participants GHPs (N=73) including clinical geneticists, counsellors, medical specialists, nurses, surgeons mental specialists (eg, psychiatrists, psychologists) had worked with BRCA1 BRCA2 families an average 9 years. Results Focus groups interviews were transcribed analysed thematically. perceived that life stage, maturity, parents’ knowledge capacity disseminate information influenced parent–offspring disclosure. In general, recommended early informal conversations illness. considered facilitation relatives using counselling strategies was responsibility, yet there limitations role legal resource constraints). Variability exists extent which overcome Conclusions views on risk are generally dependent patient’s age relative’s ability disclose information. A towards patient relative widely accepted as GHP but vary depending legislative specialty differences. Greater uniformity is needed procedural guidelines each discipline oncologists, nurses specialists) manage challenges.

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