Presented By:

Rochelle Shoretz & Jennifer Thompson

Thriving Again:

Life After Breast Cancer For

Young Jewish Women

Abstract & Overview

Objective: Develop a program to provide culturally relevant clinical support and educational resources for young Jewish breast cancer survivors and their families.

Abstract & Overview

• 3 year plan to create and implement Thriving Again: Life After Breast Cancer for Young Jewish Women

• Awarded grant in September 2011

• First year funding $305,049

• Hired Program Supervisor and Program Coordinator to develop and implement program

Comprehensive Approach to Understanding Needs

Abstract & Overview

Five step program development process

1. Identify the needs of young Jewish breast cancer survivors (YJBCS)

2. Develop a program model that will enhance Sharsheret’s current programs and include new materials to address the needs identified in step 1

3. Solicit feedback from YJBCS on materials developed in step 2

4. Revise materials

5. Launch Thriving Again: Life After Breast Cancer for Young Jewish Women

Comprehensive Approach to Understanding Needs

Understanding “Survivorship”

Identifying Research and Thought Leaders

Literature Review

• 120 articles, studies and books

• Broad definition of “survivorship”

• Identification of needs (fertility, depression, weight management, etc.)

• Limited research specific to Jewish population or other specific cultures

• Living document, grows with program

Key Informant Interviews

• 14 Key Informants

• Breast Cancer NPO professionals, breast surgeons, cancer researchers, oncologists, oncology nurses, oncology social workers, and survivors

• Identified emerging trends in field, needs of patients, and survivors

• Identification of advisory board members

National Survivorship Advisory Board

• 12 members

• Medical oncologists, breast surgeons, nurse practitioners, social workers, nonprofit leaders, genetic counselors, researchers, and survivors

• 3-year terms with quarterly teleconference meetings

• Provide guidance for National Survivorship Survey development, offer feedback on material development, assist in program launch, review program evaluation, offer feedback and guidance on program growth and expansion

Focus GroupsIdentifying the Needs of Young Breast Cancer Survivors

Focus Groups

• 45 participants

• 4 in-person, 2 online

• Represented Jewish women across the spectrum of culture and religious observance

• Identified more than 100 needs as survivors

• Offered feedback on existing survivorship programs

Participants shared needs in 8 broad categories

• Finances

• Work/Employment

• Parenting/Children

• Insurance

• Fertility and Family Planning

• Managing Healthcare Decisions

• Health and Fitness

• Relationships and Dating

Focus Group Participants

Online 47%

Atlanta11%

Los Angeles22%

Chicago 9%

New Jersey 11%

New Jersey

Chicago

Los Angeles

Atlanta

Online

National Survivorship Survey

Prioritizing the Concerns of Young Breast Cancer Survivors

Development

• Universal tool, open to all survivors

• Included culturally-specific questions for YJBCS

• Asked survivors to prioritize survivorship issues identified through literature review, key informant interviews, and focus groups

Dissemination

• Survey period March 2012

• Collaboration with more than 40 partners including nonprofits, hospitals, women’s groups, and national Jewish organizations

• Available to take in written form, online, via Facebook, QR code, and over the phone

• Targeted advertisements on Facebook

Collection

• Collected more than 1,450 responses

• Participants represented 50 states

• 36% of participants identified as Jewish

• More than 50% of participants indicated they were not currently in treatment

Next Steps

• Robust analytics to be completed in April 2012

• Ability to identify nuanced survivorship needs

• Formal report to be completed by June 2012

Lessons Learned

Lack of Culturally-Specific Information & Research

Limited Culturally-Relevant Information & Research

• 3 of more than 120 articles in literature review addressed cultural issues

• Limited programs for Jewish women, or women from other cultural backgrounds

• Limited, if any, research on the unique survivorship needs of Jewish women (or women from other cultural backgrounds)

There is a need for additional research and program evaluation specific to Jewish women (and women from other cultural backgrounds).

Lessons Learned

Survivorship Is Individualized

When Did You Consider Yourself a Survivor?

18% 20%

10%

31%

22%

Time of Diagnosis

During Treatment

Completion of Treatment

First Anniversary with NoRecurrence

I Do Not Consider Myself ASurvivor

“Survivorship” is a self-defined term. Women identify as a “survivor” at various stages in their breast cancer journey.

Survivorship programs should be sensitive and inclusive of women at various stages in their cancer journey.

Lessons Learned

Survey Collection Results

0

50

100

150

200

250

300

350

400

450

500

Email Surveys FacebookPromotion

Conferences QR Code TelephoneSurveys

Collection Site

Su

rveys C

oll

ecte

d

Reaching Survivors “Where They Are”

Young survivors can be reached through multiple modalities.

Organizations should create and maintain strategic outreach plans to reach survivors through multiple channels.

Survivors are everywhere.

Organizations should offer programs that are accessible from anywhere in the United States.

Next StepsSurvey Analysis

Utilizing Statistical Package for the Social Sciences (SPSS) to conduct robust analysis and help identify trends, correlations, nuances specific to young Jewish breast cancer survivors.

Leveraging NSAB members with experience in research to assist in data analysis.

Preliminary findings to be completed by mid-May 2012.

Formal report completed by June 2012, to be shared with collaborators and breast cancer community at large.

Next StepsProgram Development

Internal review of needs identified in National Survivorship Survey—marry needs with existing programs, and identify opportunities for growth.

Identify 5-10 “priority needs” that are currently not addressed. Develop strategies and programs that Sharsheret can implement to address these needs.

National focus groups with YBCS to gain feedback on Sharsheret’s preliminary strategies/program ideas to help focus final program development.

Create final program elements of Thriving Again.

Launch Thriving Again—October 2012

Next StepsOngoing Program Evaluation

January-April 2013: Focus groups for initial feedback on program materials, platform, and ease of access to services.

May-June 2013: Held for revisions to program if needed.

July-September 2013: Thriving Again program evaluation, to include focus groups and survey tool.

Presented By:

Rochelle Shoretz & Jennifer Thompson

Thriving Again:

Life After Breast Cancer For Young Jewish Women