Rochelle Shoretz Founder and Executive Director Culturally Appropriate Health Communications For Women At Increased Risk

Sharsheret, Hebrew for “chain”, is a national not-for-profit organization supporting young women and their families, of all Jewish backgrounds, facing breast cancer. Our mission is to offer a community of support to women diagnosed with breast cancer or at increased genetic risk, by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources. Sharsheret supports young Jewish women and families facing breast cancer at every stage - before, during, and after diagnosis. We help women and families connect to our community in the way that feels most comfortable, taking into consideration their stage of life, diagnosis, or treatment, as well as their connection to Judaism. We also provide educational resources, offer specialized support to those facing ovarian cancer or at high risk of developing cancer, and create programs for women and families to improve their quality of life. About Sharsheret

Culture and Health Care In health care, areas in which an individual’s culture may affect beliefs and values include:  Perception of health, illness, suffering, and death  View of hospitals, nurses, doctors and other healers  Rituals and customs  Boundaries related to privacy, age, gender and relationships  Effectiveness and value of tests and therapies

Culture and Health Care (continued)  Individual time-keeping beliefs and practices that may direct activities (e.g., medical testing appointments before sunset)  Family and social relationships (e.g., roles of family members and religious leaders in decision-making)  Communication norms (e.g., eye contact versus avoiding direct eye contact, asking questions versus avoiding direct questioning) Source: College of Nurses of Ontario, Culturally Sensitive Care, 2009

Culture and Health Care Breast cancer information provided to women “should be targeted; women need to perceive information as personally relevant to women in their age group and culture.” Source: 2001 Assessment of Breast Cancer Needs of Young Women, Commissioned by Susan G. Komen for the Cure.

Shaping Messages How do we craft culturally appropriate messages for women at increased risk?  Understand the culture and background of our target audience  Assess the health and risk messages traditionally communicated to that audience  Tailor the content and the delivery of our risk message to that audience

Shaping Messages Understand the culture and background of our target audience  Qualitative analysis of the audience  Focus groups  Surveys  Personal interviews  Involve non-traditional experts  Consultants from within the target community  Relevant cultural resource organizations

Shaping Messages Assess the health and risk messages traditionally communicated to the target audience  How much does the target audience already know about their risk?  What barriers might exist in communicating additional risk information?  How can we overcome these communication barriers?

Shaping Messages How much does the target audience already know about their risk?  “Jewish women seem to have a lot of breast cancer.”  “I’ve heard of breast cancer genes.”  “We don’t talk about cancer in our community.”

Shaping Messages What barriers might exist in communicating risk information?  Religious barriers  “It’s all in God’s hands.”  Modesty as a religious value  Spiritual leader’s role in sanctioning messages  Cultural barriers  “We don’t discuss cancer publicly.”  “Breast cancer is not a ‘Jewish’ issue.”  Implications on marriage for single women

Shaping Messages What barriers might exist in communicating risk information? (continued)  Historical barriers  “I don’t know my family history because my family did not survive the Holocaust.”  Psychosocial barriers  “I don’t like to read about things that scare me and about which I think I can’t do anything.”

Shaping Messages How can we overcome these communication barriers?  Respect the cultural and religious boundaries; don’t try to change them  Tailor the content of the message to specific audiences; communication is not a “one size fits all” proposition  Adapt delivery of the message in response to cultural or religious concerns

Shaping Messages Tailor the content and delivery of our risk message to the target audience  Content includes text, images, and language  Delivery includes methods, tools, and timing

Shaping Messages Content includes text, images, and language  Are we using word choices and tone that resonate with our target audience?  Are we using images that adhere to acceptable standards of modesty?  Are we translating our messages into the most relevant language?

Shaping Messages Delivery includes methods, tools, and timing  Is it best to communicate with our audience in print, online, by phone, word of mouth?  Are we using the most appropriate tools to communicate (e.g., social media, blogs)?  Are we using the most appropriate messengers to assist in communication (e.g., doctors and spiritual leaders)?  Are we considering religion and culture in timing the delivery of our messages?

At Risk or BRCA Positive  Speak With Other Women At Risk  Speak With Our Genetic Counselor  Genetics Seminars  Genetics Booklets One in 40 Ashkenazi (Eastern European) Jews carries a BRCA gene mutation, nearly 10 times the rate of the general population, making Jewish families significantly more susceptible to hereditary breast cancer and ovarian cancer. If you have a strong family history of cancer, have considered genetic counseling, or have opted for genetic testing, we can help.

Design: Big Duck, NYC

Genetics for Life Program Sharsheret addresses hereditary breast cancer and ovarian cancer through the Genetics for Life Program  Genetic Counselor on staff  Topical teleconferences, including “Breast Cancer Genetics and the Sephardic Jewish Woman” and “Breast Cancer Genetics: Impact on the Jewish Woman and Her Family”  Your Jewish Genes: Hereditary Breast Cancer and Ovarian Cancer resource booklet

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