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!
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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
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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
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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.
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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)
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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
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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
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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.
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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)
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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
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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.
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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)
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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
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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
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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
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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
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Community Partners
Department
of Medicine
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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
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Conceptual Framework
Department
of Medicine
COPING
SKILLS
TRAINING
Coping
PEER
SUPPORT
Support
QoL
Selfefficacy
Distress
Anxiety
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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.
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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.
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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
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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
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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
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Department
of Medicine
Standardization of Adapted
Intervention
Manualize
Recruitment and intervention
Training
Document
Adaptation processes
Implementation processes
Lessons learned
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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
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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
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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
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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
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of Medicine
Collaborative Data Collection,
Analysis, and Dissemination
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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
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Department
of Medicine
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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
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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
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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
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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
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Department
of Medicine
Collaborative Data Analysis
Study 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
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
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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
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Collaborative Dissemination
Department
of Medicine
CBO guide to
developing
peer support
programs
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Collaborative Dissemination
Department
of Medicine
Published 3 co-authored peerreviewed journal articles
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of Medicine
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Collaborative Dissemination
Department
of Medicine
Presentations
12 National
9 Regional or local
APOS, CBCRP, AACR, GSA, CAB,
safety net providers
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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
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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
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of Medicine
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of Medicine
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of Medicine
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of Medicine
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