Nuevo Amanecer – A New Dawn Promoting the Health of Latinas with Breast Cancer

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

Department of Medicine

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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


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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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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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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Published 3 co-authored peer-reviewed journal articles


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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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Nuevo Amanecer – A New Dawn Promoting the Health of Latinas with Breast Cancer

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