Manami Matsukawa

Communication Between Japanese Patients With Hereditary Breast and Ovarian Cancer and Healthcare Providers on Sexual Health After Risk‐Reducing Bilateral Salpingo‐Oophorectomy

ABSTRACTBackgroundRisk‐reducing bilateral salpingo‐oophorectomy (RRBSO) is recommended for BRCA1/2 carriers to reduce ovarian cancer risk. Although RRBSO affects sex life, discussing this with healthcare professionals (HCPs) can be challenging. Moreover, research on this topic in Asia is limited.AimsThis study aims to clarify HCPs' communication on RRBSO's impact on sex life and to consider the preferred communication methods of Japanese BRCA1/2 carriers and their partners.MethodsA web survey was conducted with BRCA1/2 carriers and their partners using snowball sampling. Participants who agreed to the additional interview underwent interviews. Thematic analysis was performed on free‐text responses and interview data. A pamphlet reflecting experiences with RRBSO was published after the survey, and feedback was obtained online.ResultsOf the 50 surveyed participants, 10 underwent interviews. Three themes emerged: (1) hesitancy to ask questions about sex life, (2) the need to inform and support couples on their sex life after RRBSO, and (3) the unhelpfulness of receiving explanations from those who have not undergone RRBSO. Only 34.0% of participants received information on post‐RRBSO sex life. Many expressed the need for themselves and their partners to receive information before RRBSO. The feedback survey revealed that digital pamphlets and paper were the preferred tools.ConclusionsProviding couples with information about post‐RRBSO sex life is essential. Additionally, cultural taboos hinder discussions on sex life leading to a preference for indirect sources of information. In Japan, some patients may face challenges in directly communicating with HCPs, highlighting the value of pamphlets and digital resources.

Japanese women's reasons for accompaniment status to hereditary breast and ovarian cancer‐focused genetic counseling

AbstractGenetic counselors routinely assess and understand clients’ needs at the beginning of a session. Attending a genetic counseling session with or without companions is an objective sign that genetic counselors can easily notice. This study focused on clients’ reasons for their accompaniment status for genetic counseling, which we categorize into attending with or without a companion(s). A questionnaire survey and interviews were conducted using snowball sampling, starting with the chief executive officer (CEO) of the Japanese hereditary breast and ovarian cancer (HBOC) support group. Of 32 participants, 19 continued with an in‐depth interview after answering the questionnaire. Five themes were identified from the interview: (1) personal confidence, (2) decision‐making style, (3) family members’ habits and time availability, (4) considerations and conflicts with family members, and (5) healthcare provider's suggestion. Our data suggested that the clients expected their companion(s) to play certain roles. This indicates that the reasons of accompaniment status will be helpful for genetic counselors to understand both clients’ and their families’ motivations, personalities, habits, and psychosocial backgrounds. In a high‐context culture such as that of Japan, accompaniment status may be a helpful sign to understand clients’ true worries. In addition, some companions may be future clients in genetic counseling, due to the genetic nature of the disease. In conclusion, our study indicated that it is important for genetic counselors to record accompaniment status before the initial genetic counseling and to pay attention to its reasons at the beginning of the session, which may lead them to understand the client's psychosocial background to facilitate better client‐centered genetic counseling.