“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

Abstract

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.

Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment

“…Nonetheless, findings echo many of the experiences and needs expressed by our non-Latina patients [17, 28, 33] and other studies with high-risk non-Latina breast cancer patients [34–36]. Although attendees were demographically representative of Latinas in our clinics, they may represent a select group with on-going post-GCRA needs and may not be representative of Latinas elsewhere.…”

Challenges in managing genetic cancer risk: a long-term qualitative study of unaffected women carrying BRCA1/BRCA2 mutations

“…These interventions have been found to help BRCA1/BRCA2-positive women in terms of risk management, because they provide information, emotional support, and specific experiential knowledge from women with similar medical conditions. 35,36 In conclusion, this qualitative study provides new insights into the experience of unaffected women carrying BRCA1/ BRCA2 mutations. These women are exposed to contradictory pressures from the social and medical systems and are thus prone to develop a sense of disorientation regarding the most appropriate way of coping with cancer risk.…”

An Online Resource of Digital Stories About Cancer Genetics: Qualitative Study of Patient Preferences and Information Needs

“…Patients suggested this information could be provided on a public website [20]. Another study exploring the information needs of women carrying a BRCA 1/ 2 gene mutation, which increases their risk of breast and ovarian cancer, found that participants felt that they and their families would benefit from an ongoing support network, which incorporated some Internet-based support [34]. Previous research with CGSW patients has shown that patients want up-to-date and accurate information about cancer genetics, to be reminded that they are never discharged from the service, and the opportunity to hear from other patients [20,35].…”