Nuevo Amanecer – A New Dawn Promoting the Health of Latinas with Breast Cancer Community-Based Participatory Research Institute June 26, 2013 Anna Nápoles, UCSF Carmen Ortiz, Círculo de Vida Department of Medicine 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. U01CA86117 OUR WONDERFUL COMMUNITY PARTNERS AND PROGRAM STAFF! 2 Department of Medicine 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 Department of Medicine Latinas’ Higher Risk of Psychosocial Distress 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 4 Department of Medicine 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 Limited Health Insurance Coverage Department of Medicine 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 Department of Medicine 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 7 Recruitment (n=330) Department of Medicine 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 8 Language Assistance Needs Department of Medicine 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 Summary of Study 1 Department of Medicine 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) 10 Department of Medicine Study 2: What Does a Culturally Competent Intervention Look Like? CBPR CRC pilot study to identify: Psychosocial needs of Spanishspeaking 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 11 Las Angelitas: Peer Support Model Department of Medicine 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. 12 Data Sources Department of Medicine 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 Framework for Cultural Adaptation Department of Medicine Latinas’ Needs Intervention Delivery Information on cancer Provide culturally appropriate Spanish language information Advocacy PSC navigates, obtains resources on behalf of client Increase awareness of support services PSC initiates contact; MD and family can encourage use Deal w/ fear of impending death PSC relieves fears, invokes hope, prayer, faith 14 Framework for Cultural Adaptation Department of Medicine Latinas’ Needs Intervention Delivery Emotional support PSC intervenes early with compassion, support Difficulty expressing feelings, needs PSC models expressive behaviors, reinforces practice Sense of powerlessness PSC focuses on building self-efficacy, through self-care skills Culturally competent services, language assistance PSC interprets, translates, shares same background 15 Framework for Cultural Adaptation Department of Medicine Latinas’ Needs Central role of family Spirituality Building confianza (trust) through personalismo Transportation Intervention Delivery PSC involves family in supporting patient, supports family PSC respects and supports clients religious beliefs PSC uses in-person contact, tailors intensity of support PSC travels to patient + phone support 16 Study 3: RCT of Nuevo Amanecer Department of Medicine 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 Community Partners Department of Medicine 18 Study Design Department of Medicine Recruit 170 Latinas diagnosed with breast cancer in the past year Randomized to intervention or waitlist Alameda, Contra Costa, San Francisco, San Mateo and Santa Clara Outcomes: breast cancer-specific quality of life (FACT-B), distress 19 Conceptual Framework Department of Medicine COPING SKILLS TRAINING Coping PEER SUPPORT Support QoL Selfefficacy Distress Anxiety 20 Department of Medicine 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, selfmonitoring Graves KD, et al.2003 Palliat Supportive Care;1:121-134. 21 21 Integrate Cultural Factors Department of Medicine 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 Department of Medicine Multistage Cultural Adaptation Process 1) Form project team with diverse backgrounds 2) Identify key cultural themes, values, needs, implications for delivery of intervention 3) Identify key EBI components to be adapted 23 Department of Medicine Multistage Cultural Adaptation Process (cont.) 4) Integrate both, translate, and review by diverse groups of experts 5) Pretest and revise prototype of adapted intervention 6) Finalize 24 Adaptation to Community Settings Department of Medicine 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 Department of Medicine Standardization of Adapted Intervention Manualize Recruitment and intervention Training Document Adaptation processes Implementation processes Lessons learned 26 Department of Medicine 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 27 Structure and Current Status Department of Medicine 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 target140 expected by Sept. 2013 28 Department of Medicine Conclusions on Partnership Complementary Assets Circulo de Vida Culturally competent services Peer support program: Las Angelitas Credibility in the community Clinical supervision experience Latina breast cancer survivors 29 Department of Medicine Conclusions on Partnership Complementary 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 30 Department of Medicine Collaborative Data Collection, Analysis, and Dissemination 31 Department of Medicine 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 Department of Medicine 33 Department of Medicine Collaborative Data Collection CBO-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 Department of Medicine Collaborative Data Collection CBO-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 Department of Medicine 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 Collaborative Data Analysis Department of Medicine Compañeras provide key insights during monthly conference calls - literacy issues - financial hardships - community resource lists Compañeras will be debriefed at end of study 37 Department of Medicine Collaborative Data Analysis Study 1 CDV-generated research question UCSF analyzed data Joint team meetings to review results Co-authored manuscript 38 Collaborative Data Analysis - Pilot Department of Medicine 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 Department of Medicine Collaborative Data Analysis Mentoring Latina trainees participate in data collection and analysis Medical students SFSU Master’s student interns Potential diversity supplement 40 Collaborative Dissemination Department of Medicine CBO guide to developing peer support programs 41 Collaborative Dissemination Department of Medicine Published 3 co-authored peerreviewed journal articles 42 Department of Medicine 43 Collaborative Dissemination Department of Medicine Presentations 12 National 9 Regional or local APOS, CBCRP, AACR, GSA, CAB, safety net providers 44 Dissemination Plan Department of Medicine Presentations Peer-reviewed articles Executive summary – policy briefing Mailing to participants stressing value of their participation with results Social media 45 Dissemination Plan Department of Medicine Program materials will be on CBO and UCSF websites Dissemination grant of program is effective Technical assistance to other CBOs 46 Department of Medicine 47 Department of Medicine 48 Department of Medicine 49 Department of Medicine 50 Department of Medicine 51 Department of Medicine 52