title: A UK collaborative 1-day pilot information and support forum facilitated by a national breast cancer charity and NHS cancer genetic counsellors, for women at high risk, BRCA 1/2 gene carriers and hereditary breast cancer.
abstract: Since the identification of the breast cancer susceptibility genes BRCA 1/2, genetic assessments of individuals and their families has greatly increased. The assessment of an individual as being at high risk, a gene carrier or an inheritor of cancer changes that individual's life. There is then a great need for ongoing information and support, not only from healthcare professionals but from peers - other women in the same situation. Breast Cancer Care is aware of this need; for a number of years, we have been providing published information, online-based information and support and telephone support to women who are BRCA 1/2 gene carriers and women with hereditary breast cancer. As part of our continuing commitment to improve on and develop other information and support services to this target group, we collaborated with a number of Genetic Counsellors from London, Oxford, Cambridge and Southampton to develop and pilot a 1-day support forum. This article discusses the factors that led to the pilot information and support forum, its development and how it was evaluated, and suggests a potential way forward.
authors.affiliation: Breast Cancer Care, 5-13 Great Suffolk Street, London SE1 0NS, UK. jackie.harris@breastcancercare.org.uk
authors.forename: J
authors.initials: J
authors.lastname: Harris
authors.forename: S
authors.initials: S
authors.lastname: Ward
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics*; D002608:Charities; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000458:organization & administration*; D006579:Heterozygote; D006801:Humans; D008875:Middle Aged; D010865:Pilot Projects; D016730:Program Development; D015397:Program Evaluation; D012944:Social Support; D013222:State Medicine; D006113:United Kingdom