"The bigger the network the bigger the bowl of cherries...": exploring the acceptability of, and preferences for, an ongoing support network for known BRCA 1 and BRCA 2 mutation carriers.
There is increasing evidence to suggest that the ongoing information and support needs of BRCA gene mutation carriers are not being met. This qualitative study investigated preferences for an on-going support network for mutation carriers in Wales, UK. Seventeen female BRCA1/2 mutation carriers participated in focus groups which explored their current and on-going information and psychological support needs. The interviews were transcribed and thematically analysed. The results reflected a diversity of experiences and support needs. The majority of participants felt they and their families would benefit from an on-going 'support network' which should incorporate information-provision alongside elements of a traditional support group alongside, internet-based support such as web-based chat forums, matching schemes and professionally led workshops. Some degree of professional input into any such initiative was believed to be important. This study has informed the development of an appropriate support network based on a hub and spoke model to help carriers and their families adapt to living and coping with their genetic risk.
Hughes
Lisa
L
East Anglian Medical Genetics Service, Addenbrookes Hospital, Cambridge, UK. lisa.hughes@addenbrookes.nhs.uk
Phelps
Ceri
C
D000223:Adaptation, Psychological; D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology; D005260:Female; D017144:Focus Groups; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006580:Genetic Carrier Screening; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology; D012944:Social Support; D014852:Wales
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