Survey on Addressing the Information and Support Needs of Jewish Women at Increased Risk for or Diagnosed with Breast Cancer: The Sharsheret Experience

Abstract

Approximately 12% of women living in the United States will be diagnosed with breast cancer during their lifetimes. While all women face formidable challenges posed by the threat of living with or at increased risk for breast cancer, those of Ashkenazi Jewish descent face additional challenges owing to higher BRCA1/2 mutation prevalence in this population. Amidst calls for population-based screening for hereditary breast cancer risk, much can be learned from the experiences of Jewish women about their needs. The present study is a secondary analysis of psychoeducational program satisfaction and evaluation data previously collected by a community organization dedicated to serving women of all Jewish backgrounds facing, or at risk for, breast cancer. Among respondents (n = 347), over one-third were referred to the organization by family or friends, most often after a cancer crisis. Of the information and support resources offered, the greatest level of engagement occurred with the one-on-one peer support and health care symposia resources. Respondents endorsed high levels of satisfaction with the programs and services, and a strong desire to give back to the community. These data suggest that culturally-relevant information and support services for Jewish women could be scaled-up for larger dissemination to meet the anticipated needs in this special population.

Psychosocial Interventions for Women with a BRCA1 or BRCA2 Mutation: A Scoping Review

“…In assessments of satisfaction, most peers and recipients of the intervention were very satisfied [ 15 , 16 , 17 , 18 ]. Qualitative analyses found that peers reported feeling valuable given the support they were able to provide, while recipients reported a reduced sense of isolation and the usefulness of hearing the experiences and advice of their peers [ 15 , 17 ].…”

“…Five publications described one-day interventions: these ranged from more casual retreats to more structured information sessions to a conference with seminars, teleconferences, and webinars. Discussion topics included general information about hereditary breast and ovarian cancers, risk-reducing surgeries and surveillance, and body image and sexual health [ 16 , 32 , 33 , 34 , 35 ].…”

“…Two studies reported a decrease in anxiety and psychological distress, and one study observed no significant change [ 32 , 33 , 34 ]. Participants in one-day sessions reported feeling less isolated, more empowered, and reported high satisfaction with the intervention [ 16 , 33 , 35 ]. McKinnon et al found half of their participants that altered their health behaviour did so as a result of the intervention; this included increasing cancer screening and completing or considering surgery [ 34 ].…”

“…We have previously reported on the prevalence of long-term distress in an international cohort of women with a BRCA1 or BRCA2 mutation [10]. At an average of 5 years post genetic testing, 16.3% of the women had moderate to severe cancer-related distress. Some women with a BRCA1 or BRCA2 mutation may benefit from both short and long-term psychosocial follow-up.…”

Can Social Media Be Used as a Community-Building and Support Tool among Jewish Women Impacted by Breast and Ovarian Cancer? An Evidence-Based Observational Report

“…The internet is a common resource to obtain and deliver health information, including cancer support services. One study revealed that 59% of Americans have searched online for health information, with 25% reporting that they searched online to specifically understand a health condition [ 8 ]. In recent years, using social media (SM) groups has gained popularity, especially among those affected by chronic diseases.…”