Nuevo Amanecer – A New DawnPromoting the Health of Latinas with Breast Cancer
Anna Nápoles, UCSF Carmen Ortiz, Círculo de Vida
June 26, 2013
Community-Based Participatory Research Institute
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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!
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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
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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
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Latina Breast Cancer Survivors’ Greater Concerns ….RecurrencePainDeathComplications of adjuvant therapyBody imageWeight gainSexual functioningRejection 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.
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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)
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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
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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
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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 interpretersNápoles-Springer AM, et al. 2007 J Cancer Surviv;1:193–204.
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Summary of Study 1
Latinas use support services when they are culturally appropriate
Need for increased language accessFamily and MD encouragement to attend
were key determinantsSpirituality offers alternative source of
supportCancer self-efficacy is key to better
perceived health(Nápoles-Springer A, et al. J Cancer Survivorship, 2007;1:193-204)
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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
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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.
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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)
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Framework for Cultural Adaptation
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
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Framework for Cultural Adaptation
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
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Framework for Cultural Adaptation
Latinas’ Needs Intervention Delivery
Central role of family PSC involves family in supporting patient, supports family
Spirituality PSC respects and supports clients religious beliefs
Building confianza (trust) through personalismo
PSC uses in-person contact, tailors intensity of support
Transportation PSC travels to patient + phone support
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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
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Community Partners
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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
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Conceptual Framework
COPING SKILLS TRAINING
PEER SUPPORT
Coping
Self-efficacy
Support
QoL
Distress
Anxiety
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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.
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Integrate Cultural Factors
Shared cultural identity, personalismo
Language and literacy appropriateEmotional and informational
support for patient and familyLogistical supportReferrals to community resources
Nápoles-Springer AM, et al. 2009 J Immigr Min Health;11(4):268-80.
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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
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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
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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
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Standardization of Adapted InterventionManualize
Recruitment and intervention
Training
Document
Adaptation processes
Implementation processes
Lessons learned
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New Program – Nuevo Amanecer (A New Dawn)
8-week manualized intervention
Delivered by trained Latina BCS
Focuses on CBSM skills training and emotional support
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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
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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
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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
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Collaborative Data Collection,
Analysis, and Dissemination
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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
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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
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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
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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
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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
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Collaborative Data AnalysisStudy 1
CDV-generated research question
UCSF analyzed data
Joint team meetings to review results
Co-authored manuscript
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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
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Collaborative Data Analysis - Mentoring
Latina trainees participate in data collection and analysisMedical students
SFSU Master’s student interns
Potential diversity supplement
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Collaborative Dissemination
CBO guide to developing peer support programs
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Collaborative Dissemination
Published 3 co-authored peer-reviewed journal articles
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Collaborative Dissemination
Presentations
12 National
9 Regional or local
APOS, CBCRP, AACR, GSA, CAB, safety net providers
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Dissemination Plan
Presentations
Peer-reviewed articles
Executive summary – policy briefing
Mailing to participants stressing value of their participation with results
Social media
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Dissemination Plan
Program materials will be on CBO and UCSF websites
Dissemination grant of program is effective
Technical assistance to other CBOs
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