1. Formative Evaluation of Interventions Addressing Culturally Relevant Needs of Young Breast Cancer Survivors Adina Fleischmann, LSW, Sharsheret; Mary Ann Hall, MPH, ICF; Ashani Johnson-Turbes, PhD, ICF;
Rochelle Shoretz, JD, Sharsheret; Elana Silber, MBA, Sharsheret
San Antonio Breast Cancer Symposium – December 9-13, 2014
Abstract
Methods
Results, continued
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 and BRCA2 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, as part of a larger CDC-funded project, Sharsheret conducted a formative evaluation to strengthen its existing PSN and GFL interventions.
YBCS want resources addressing genetics, side effects, and consequences of treatment (e.g., effects on fertility, intimacy, and premature menopause) rather than treatment itself.
YBCS need culturally relevant peer support and genetic resources at diagnosis, during treatment, and post-treatment, and support for caregivers.
YBCS prefer to receive information and support through diverse modalities, including health care providers, online, peer supporters, support groups, symposia, and mass media.
YBCS recommended outreach efforts targeting locations that attract young people (e.g., schools and salons) and clergy, school principals, Jewish organizations, and health care providers.
YBCS suggested technology-based modifications to PSN and GFL, including online intake forms, a Live Chat option, video testimonials, online pedigrees, and family conference calls.
Sharsheret conducted 4 focus groups to gain a deeper understanding of
the psychosocial and reproductive health information needs and concerns of Jewish YBCS and to gather their feedback on PSN and GFL program content and delivery. We conducted 4 two-hour focus groups:
2 focus groups explored PSN (1 face-to-face, 1 online)
2 focus groups explored GFL (1 face-to-face, 1 online)
A total of 27 Ashkenazi Jewish YBCS, age <45 at time of diagnosis, participated in the focus groups.
Focus groups were selected as the most appropriate investigative technique because of their information-rich nature. Focus group discussions, or intensive group interviews, are a flexible tool for exploring respondents’ awareness, concerns, beliefs, experiences, motivation, operating practices, behaviors, and plans related to a topic and sub-issues (Krueger, 1994).
FG 1
(Face-to-face)
FG 2
FG 3
(Online) 
FG 4
(Online)
PSN NA
1 group
(7 women)
 NA
(6 women)
GFL
NA 
Collaborative Research
This work was done through a collaborative partnership between CDC, Sharsheret, and ICF International. Sharsheret programs – the PSN and GFL – are practice-based interventions designed to provide culturally appropriate psychosocial and reproductive health support to Jewish YBCS.
Conclusions
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. Health care providers 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.
The findings reaffirm the value of age-appropriate and culturally relevant resources and interventions. Sharsheret used the focus group findings to enhance the reach and delivery of the PSN and GFL support interventions.
Study Objectives
The objectives of the study were to:
Assess psychosocial health information and support needs of Ashkenazi Jewish YBCS
Assess the reproductive health information and support needs of Ashkenazi Jewish YBCS
Identify potential modifications to the content and delivery of Sharsheret’s PSN and GFL support interventions
Results
Demographics: All participants self-identified as Ashkenazi Jewish. Most identified as Orthodox (16) or Conservative (6). Most (24) had completed a college education and 11 were employed full-time. The average age of participants was 40.4 years in the GFL group and 44 years in the PSN group. Most participants (23) were married.
References
Krueger, R. A. (1994). Focus groups: A practical guide for applied research (2nd ed.). Thousand Oaks,
CA: Sage Publications, Inc.
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