Abstract
This examines the coping needs of individuals with a BRCA1/2 alteration in Ireland. This study examined coping and information needs in this cohort, and was nested within a larger study in order to develop an online tool to promote positive adaptation following the identification of a BRCA1/2 alteration. A total of 18 participants took part in individual, semi-structured online interviews. A reflexive thematic analysis was employed to analyse data. A public and patient involvement panel of six individuals with a BRCA1/2 alteration provided input on terminology and study design. Two key themes were identified. "Adjusting to a new perspective" was the first, referring to how individuals readjusted to their life after finding out about their BRCA1/2 genetic status. This theme had two subthemes (i) "emotional aspects", reflecting how participants navigated the emotive aspects of their BRCA1/2 alteration status and (ii) "relationships changing", which encompassed the ways in which interpersonal relationships were impacted by BRCA1/2. The second theme, "making sense of BRCA" had two subthemes, (i) "meaning making", depicting how participants found meaning through their BRCA1/2 alteration status, and (ii) "hope", which details the frequent reliance on hope as a means to cope with their genetic status. Individuals with a BRCA1/2 alteration require specialised psychological support to assist with navigating their situation, with a focus on how to prepare for the emotional and relationship changes that the identification of BRCA1/2 alteration in the family can elicit. Providing decisional aids and informational tools may assist in meeting this need.
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