Empowering Latina Breast Cancer Survivors: A New Dawn for Health Promotion

1. Nuevo Amanecer – A New DawnPromoting the Health of Latinas with Breast Cancer Anna Nápoles, UCSF Carmen Ortiz, Círculo de Vida Community-Based Participatory Research Institute June 26, 2013

2. Acknowledgements California Breast Cancer Research Program of the University of California grants no. 11AB-1600, 15BB-1300 and 15BB-1301 Redes en Acción, NCI grant no. U01-CA86117 OUR WONDERFUL COMMUNITY PARTNERS AND PROGRAM STAFF! 2

3. Latina Breast Cancer Survivors:A Growing Cohort • Most frequently occurring cancer and leading cause of cancer death • In 2006, over 96,000 Latina breast cancer survivors in U.S. • By 2050, Latinos will make up almost 30% of U.S. pop 3

4. More advanced/aggressive disease Comorbidity Lack of knowledge about illness and self-care = fear, greater concerns SES, financial hardship, inadequate insurance, lack of familiarity with health care system Culturally and linguistically inappropriate services Latinas’ Higher Risk of Psychosocial Distress 4

5. Latina Breast Cancer Survivors’ Greater Concerns …. • Recurrence • Pain • Death • Complications of adjuvant therapy • Body image • Weight gain • Sexual functioning • Rejection by partner Ashing-Giwa K. Psycho-Oncol 2004;13:408-28. Spencer SM. Health Psychol 1999;18:159-68. Eversley R. Oncol Nurs Forum. 2005; 32:250-6. 5

6. Limited Health Insurance Coverage While Latinos represent 13% of US pop. they make up 30.4% of the uninsured (NCHS, Health, US Chartbook, 2002) Uninsured Latinas with breast cancer are 2.3 times more likely to be diagnosed at a later, less treatable stage (Am College Phys, No Health Ins, White Paper, 2000) Only 38% of Latinas > age 40 have regular mammograms (ACS, NCI, Komen web sites) 6

7. Study 1: Population-based Phone Survey • Aim: Explore use of support groups among Latina BCS • Self-identified as Latinas • Registry reported first in-situ or invasive breast cancer between 1999-2002 • Alameda, Contra Costa, Santa Clara or Santa Cruz counties

8. Recruitment (n=330) Sampling frame=1,133 eligible women • Unable to contact: 333 (29%) • Ineligible: 249 (22%) • Declined: 161 (14%) • Too ill/deceased: 60 (6%) • Participated: 330 (29%) • 67% response rate among eligible and contacted

9. Language Assistance Needs Almost half of Latinas with breast cancer in 4 counties were LEP Almost two-thirds of LEP Latinas never saw MD speaks Spanish well One-fourth never or rarely used an interpreter Almost half used a family member or friend when used an interpreter Only 18% used professional interpreters Nápoles-Springer AM, et al. 2007 J Cancer Surviv;1:193–204. 9 9

10. Summary of Study 1 • Latinas use support services when they are culturally appropriate • Need for increased language access • Family and MD encouragement to attend were key determinants • Spirituality offers alternative source of support • Cancer self-efficacy is key to better perceived health (Nápoles-Springer A, et al. J Cancer Survivorship, 2007;1:193-204)

11. Study 2: What Does a Culturally Competent Intervention Look Like? CBPR CRC pilot study to identify: • Psychosocial needs of Spanish-speaking Latinas with breast cancer • Identify the barriers to and benefits of support services • Key components of a Peer Support Counselor (PSC) intervention with input from advocates and survivors

12. Las Angelitas: Peer Support Model • Group members are formally trained as PSCs • Provide one-to-one support through home and hospital visits to client and family • Ensure understanding of surgery and treatment • Link Latinas to community resources • identify barriers that may prevent clients from receiving quality cancer treatment.

13. Data Sources • Semi-structured interviews with Latina cancer survivors (n=29) • Interviews with community advocates (n=17) • Telephone survey of Latinas referred to Círculo de Vida (n=189) 13

14. Framework for Cultural Adaptation 14

15. Framework for Cultural Adaptation 15

16. Framework for Cultural Adaptation 16

17. Study 3: RCT of Nuevo Amanecer • Aim: 3-year CBPR project to adapt and test an evidence-based psychosocial intervention for newly diagnosed Latinas • Integrates evidence-based practices with community model • With input from Latina survivors and community advocates, CBOs 17

18. Community Partners

19. Study Design • Recruit 170 Latinas diagnosed with breast cancer in the past year • Randomized to intervention or wait-list • Alameda, Contra Costa, San Francisco, San Mateo and Santa Clara • Outcomes: breast cancer-specific quality of life (FACT-B), distress

20. Conceptual Framework QoL Distress Anxiety Coping Self-efficacy Support COPING SKILLS TRAINING PEER SUPPORT

21. Integrate EBI based on Social Cognitive Theory Components Relaxation skills training Cognitive restructuring Communication skills Modeling of behavior by PSC Build self-efficacy: goal setting, self-monitoring Graves KD, et al.2003 Palliat Supportive Care;1:121-134. 21

22. Integrate Cultural Factors Shared cultural identity, personalismo Language and literacy appropriate Emotional and informational support for patient and family Logistical support Referrals to community resources Nápoles-Springer AM, et al. 2009 J Immigr Min Health;11(4):268-80. 22

23. Multistage Cultural Adaptation Process Form project team with diverse backgrounds Identify key cultural themes, values, needs, implications for delivery of intervention Identify key EBI components to be adapted 23

24. Multistage Cultural Adaptation Process (cont.) Integrate both, translate, and review by diverse groups of experts Pretest and revise prototype of adapted intervention Finalize 24

25. Adaptation to Community Settings • Simplify terminology and worksheets • Emphasize strengths and resources • Delivery by peer – travels to client • More practice on communicating with family and MD (self-advocacy) • Rigorous translation and use of visuals to support low-literacy text • Review by CAB and CBOs 25

26. Standardization of Adapted Intervention Manualize Recruitment and intervention Training Document Adaptation processes Implementation processes Lessons learned 26

27. New Program – Nuevo Amanecer (A New Dawn) 8-week manualized intervention Delivered by trained Latina BCS Focuses on CBSM skills training and emotional support 27

28. Structure and Current Status • MOUs with CBOs to recruit and deliver program(field staff) • Research team provides intensive training and supervision • Support implementation and sustainability • 130 women recruited; revised target-140 expected by Sept. 2013

29. Conclusions on PartnershipComplementary Assets Circulo de Vida Culturally competent services Peer support program: Las Angelitas Credibility in the community Clinical supervision experience Latina breast cancer survivors

30. Conclusions on PartnershipComplementary Assets (cont.) UCSF Researcher Experienced in CBPR, grant proposal writing, health disparities research Access to theory-based cognitive behavioral stress management intervention and scientific literature Latina cancer researchers

31. Collaborative Data Collection, Analysis, and Dissemination 31

32. Collaborative Data Collection – Development of Assessment Tools Joint identification of constructs and measures of mediators and outcomes Developed survey together Pretested survey with CBO staff who were Spanish-speaking BCS INSERT PHOTO 32

34. Collaborative Data CollectionCBO-based Recruiters Identified CBO staff as recruiters Trained recruiters - CITI, interview methods, informed consent Compensated recruiters Participate in monthly conference calls Supervised by Project Director 34

35. Collaborative Data CollectionCBO-based Interventionists Identified CBO staff as Compañeras UCSF-CDV provided training Compensated Compañeras Participate in monthly conference calls Supervised by CBO Clinical Supervisor CBOs receive a service fee 35

36. Collaborative Data Collection – Process Evaluation Compañeras play a key role Track how well women learn Track strengths and weaknesses of program Keep extensive notes on issues that arise Allowed us to observe and audiotape sessions 36

37. Collaborative Data Analysis Compañeras provide key insights during monthly conference calls - literacy issues - financial hardships - community resource lists Compañeras will be debriefed at end of study 37

38. Collaborative Data AnalysisStudy 1 CDV-generated research question UCSF analyzed data Joint team meetings to review results Co-authored manuscript 38

39. Collaborative Data Analysis - Pilot Joint review of qualitative themes identified Collaborative integration of themes with EBI Needs assessment & program evaluation of CDV Data used in CBO grant writing 39

40. Collaborative Data Analysis - Mentoring Latina trainees participate in data collection and analysis Medical students SFSU Master’s student interns Potential diversity supplement 40

41. Collaborative Dissemination CBO guide to developing peer support programs 41

42. Collaborative Dissemination Published 3 co-authored peer-reviewed journal articles 42

44. Collaborative Dissemination Presentations 12 National 9 Regional or local APOS, CBCRP, AACR, GSA, CAB, safety net providers 44

45. Dissemination Plan Presentations Peer-reviewed articles Executive summary – policy briefing Mailing to participants stressing value of their participation with results Social media 45

46. Dissemination Plan Program materials will be on CBO and UCSF websites Dissemination grant of program is effective Technical assistance to other CBOs 46

48. What is the purpose of dissemination?

49. Who are your audiences?

50. What do you want them to learn?