Abstract P1-17-05: Formative evaluation of interventions addressing culturally relevant needs of young breast cancer survivors
Authors: Shoretz Rochelle , Fleischmann Adina , Silber Elana , Hall Mary Ann , Johnson-Turbes Ashani 
Published: May 2015

Background. Young women diagnosed with breast cancer face challenges impacting their quality of life, psychosocial functioning, and reproductive health outcomes. Ashkenazi Jewish women experience a disproportionately high prevalence of genetic mutations in the BRCA1/2 genes linked to a higher incidence of hereditary breast and ovarian cancer, and have unique needs based on genetic risk and cultural factors. Sharsheret, a national not-for-profit organization with an expertise in supporting Jewish young breast cancer survivors (YBCS), developed two interventions, the Peer Support Network (PSN) and Genetics for Life® (GFL), to address the culturally specific needs of Jewish YBCS. In 2011, Sharsheret conducted a formative evaluation to strengthen its existing PSN and GFL interventions.

Methods. Four focus groups were conducted with 27 YBCS having participated in the PSN or GFL. The groups investigated the information and support needs of YBCS of Jewish descent and YBCS perceptions of PSN and GFL content, materials and delivery channels. Two groups (online and in-person) investigated the needs of YBCS, PSN and GFL program content, and PSN and GFL program delivery related to the psychosocial health of YBCS. Two groups (online and in-person) explored YBCS needs, PSN and GFL program content, and PSN and GFL program delivery related to the reproductive health of YBCS. Participants were recruited using in-person methods, email blasts, social media and via Sharsheret website postings. Qualitative data were analyzed using a notes-based thematic analysis.

Results. Across groups, respondents identified the primary information needs for YBCS included resources addressing genetics, side effects and consequences of treatment (e.g., effects on fertility, intimacy and premature menopause) rather than treatment itself. Respondents identified that their support needs included culturally relevant peer support and genetic resources at the time of diagnosis, treatment and after treatment, as well as support for partners, family members and friends. Participants preferred to receive information and support through diverse modalities, including health care providers, the internet, peer supporters, support groups, symposia and teleconferences and mass media. Respondents recommended outreach efforts for the PSN and GFL interventions in locations that attract young people, including pediatricians’ offices, schools, salons, and college campuses, and to clergy, school principals, local Jewish organizations and health care providers. Participants also suggested potential technology-based modifications to PSN and GFL intervention delivery, including online intake forms, a LiveChat option, video testimonials, interactive expert column, online pedigrees and family conference calls with a genetic counselor or clinical staff member.

Conclusion. YBCS identified the PSN and GFL interventions as critical resources attentive to their culturally specific information and support needs. Focus group participants provided strategies to enhance intervention content and reach. Healthcare professionals serving YBCS of diverse backgrounds can utilize the data gleaned from this evaluation to shape culturally relevant interventions and materials to address the unique needs of YBCS.

Citation Format: Rochelle Shoretz, Adina Fleischmann, Elana Silber, Mary Ann Hall, Ashani Johnson-Turbes. Formative evaluation of interventions addressing culturally relevant needs of young breast cancer survivors [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-17-05.