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This is a PhD project, investigating the psychological impact of being identified as a BRCA1/2 alteration carrier in Ireland. BRCA1/BRCA2 alterations increase risk of developing numerous cancers, notably melanomas, breast and pancreatic cancers in both sexes, ovarian cancer in females and prostate cancer in males.
In the general populations, females’ risk for breast and ovarian cancer are 12.5% and 2%, respectively. A BRCA1/BRCA2 alteration increases females’ lifetime breast cancer risk to 45-90%, and ovarian to 10-60%. Female carriers are often advised to undergo preventative surgeries (e.g. bilateral mastectomy).
The PPI group and researcher aim to co-design an intervention to help coping for those with a BRCA 1/BRCA2 alteration.
Who is involved?
A PPI panel of women with a BRCA 1 or BRCA 2 alterations are involved, working with Nikolett Warner a PhD scholar in the School of Psychology NUI Galway. The women have varied experiences with their own preventative options (e.g. type of surgeries chosen) and the stage that they’re at (e.g. some have not yet undergone preventative surgeries).
Due to the familial implications of a BRCA1/2 alteration being identified, the panel have chosen to remain anonymous. This is because some panel members may have family that are not comfortable with this information being shared about them, or because they may have children/extended family that are still young and therefore are not yet aware of members in their family having a BRCA1/2 alteration.
Nature of involvement (how they interact, involvement activities)
The partnership between the researcher and the PPI group is rather unstructured and perhaps more informal than the usual PPI panel. This is due to the nature of the BRCA1/2 alteration community in Ireland, whereby it is a small population, and therefore, most individuals introduced into this community will come to know one another and will become well acquainted quite quickly.
There is no set timeline for meetings held between the researcher and the group, and instead feedback is given on issues whenever they arise. Feedback is provided by the group, usually one-on-one between each member and the researcher. In certain instances, a group video call or a group conversation may be initiated if further clarification is required. Otherwise, feedback is delivered through whatever means suits the panel member, for example, through a WhatsApp message or voice-note, a call or an email.
To ensure the panel is not overwhelmed by requests, the option of a ‘BRCA holiday’ has been established. This allows for members, at any stage, to be direct and inform the researcher that they are not feeling up to providing feedback at any given time and then no materials will be sent to the individual and there is no expectation of a response from the member on their ‘holidays’.
Progress to date
In broad terms, it was conveyed by the group that the terms ‘diagnosis’ and ‘mutation’ in relation to BRCA are considered uncomfortable, and have therefore been excluded from the vocabulary that the researcher uses when conveying results and writing about the topic.
Systematic Review: A systematic review was undertaken as part of this project to assess interventions that have already been conducted in the BRCA population.
The researcher corresponded with this group to gain feedback as to what sort of outcomes they would be interested in, and where they would like to see results published, external to an academic journal. It has therefore been agreed upon that results will be shared through relevant charity and patient organisations.
Qualitative Interviews: The researcher got feedback on the interview schedule, consent forms, information sheets, and recruitment materials utilized for this study.
A further important input for this study was that initially, the researcher only included female participants, however, through group discussion it was decided that this should be extended to include male participants. This change was applied to the project as the PPI panel felt that male members of the BRCA community in Ireland had valuable insights and have previously been excluded from the narrative surrounding BRCA in Ireland.
The Intervention: The intervention is still in early design stages, however, the panel have already indicated certain preferences, such as an online format.
Contact Nikolett Warner (email@example.com) or on Twitter @warner_niki