Conducting HIV/AIDS Prevention Research in Partnership with American Indian Communities: The NAPPASA Example Julie A. Baldwin University of South Florida

Co-Risk Factors in the Spread of HIV/AIDS u Historical trauma, oppression, prejudice, racism u Poverty u Lack of adequate & accessible health care u Geographic isolation u Interrelated behaviors which contribute to HIV/STD risk

Specific Challenges Related to HIV/AIDS Prevention Research u Fear of discussing sickness and death u Low perceptions of risk u Taboos discussing sex and drug-related behaviors u Diversity within Native communities u Concerns regarding confidentiality of information and stigma

Methods for Partnering with the Community for HIV/AIDS Prevention Research

Cycles of Input & Feedback Build & Sustain Collaborative Relationships Plan & Design Program Implement & Evaluate Program Interpret & Disseminate Information

Build & Sustain Collaborative Relationships Foster dialogue Develop trust and credibility Form a community advisory board Partner with change agents within community

Listen to What the People Have to Say u Interviews local educators, elders, health service providers, and community people v leaders v youth v parents Janice Wilson

Cycles of Input & Feedback Build & Sustain Collaborative Relationships Plan & Design Program Implement & Evaluate Program Interpret & Disseminate Information

Plan & Design Program Use focus groups and qualitative methods to obtain local insight Adapt theoretical perspectives to fit local ways of understanding the issue Develop and refine intervention to fit social setting and to build from cultural knowledge Define evaluation goals and methods respecting cultural knowledge and ways of gathering information

Focus Groups Designed to Elicit Information Regarding: Styles of local discourse Communication patterns Normative beliefs Confidence levels in engaging in preventive behaviors

Integrating Cultural Teachings with Behavior Change Methods Identify and adapt behavior change methods to local and cultural norms Initiate desirable environmental change Identify changes sustainable by local staff in local schools and community settings Use familiar cultural processes to teach new skills and habits

Holistic Approach Social

Applying Effective Education Strategies (Hansen’s list) u Information u Decision making u Resistance/Life skills u Values Clarification u Goal setting u Self-esteem u Norm setting u Persistent assistance u Lower risk alternatives

Before Program Design, Have All Partners Discuss: What are desirable behavior changes? How would you change behaviors? How would you design an intervention? What information would you collect to track progress and impact? How would you collect the data?

Cycles of Input & Feedback Build & Sustain Collaborative Relationships Plan & Design Program Implement & Evaluate Program Interpret & Disseminate Information

Implement & Evaluate Program Think outside the box! Test standard and new methods for cultural acceptability and competency Share training and support activities Identify a process for co-monitoring program progress

Instructor Training Male-female pairs of instructors 1 school +1 community 2-day training retreats In-service and follow- up consultations Observation and monitoring

Explore Alternate Methods of Evaluation Personal statements & narratives Video-taking and critical reflection Community forums for public evaluation Gaining group consensus, not creating a consensus through an aggregate of individual responses

Collaborative Relationship Dialogue among partners to discuss: - goals of the intervention - targeted behaviors - evaluation goals Formed a working group to: - discuss evaluation methods - adapt evaluation method

Process Evaluations Post-intervention focus groups Interviews with administrators and instructors Community meetings Staff monitoring and rating Instructors’ and students’ ratings of sessions

Student Assessments Questionnaires American Drug and Alcohol Survey NAPPASA Health Behavior Survey Domains included risk behaviors, self- efficacy, peer norms, self-concept, cultural identity, communica- tion, etc.

Cycles of Input & Feedback Build & Sustain Collaborative Relationships Plan & Design Program Implement & Evaluate Program Interpret & Disseminate Information

Presentation of Evaluation Findings... (Thurman, 1995) Alter negative perceptions Convey some message of hope Raise awareness of other researchers Build Native support Increase positive images of Native people Assist in development of programs that promote increased opportunities and self- sufficiency

Interpretation and Dissemination u Partners collectively interpret the data u Partners develop a dissemination plan - Summary in local newspaper - Public community presentation - Regional conference presentation(s) with Council or IRB approval - Identify publication sites - Develop publications collaboratively submit with Council or IRB approval

What did the partners create? u First sustained AI AIDS/AOD prevention program at school and community levels u Two-stage Prevention Curricula (20+20) with media enhancements, effective manuals, training materials, & evaluations u Research evidence of positive effects on reducing risks among youth u Many positive environment and organizational changes (set new norms)

Evidence of changing norms … “I didn’t want to talk about AIDS…and sex. To me it’s something you don’t even talk about....BUT I DO NOW!”

Key findings: research with Native youth u Prevention programming should start at early ages, before the risk behaviors are initiated. u Successful prevention programs are built on the foundation of the family and transmit the cultural values held by the family. u Primary prevention will be most successful if the community provides a stable environment. u Elders are indispensable to youth because they are the transmitters of culture.

Implications of results u Our findings suggest the need to look at different cultural, social and individual processes for risk and protective behaviors for different target groups. u HIV/AIDS is multifaceted and causal factors must be studied from a multidimensional perspective.

Conclusions & Recommendations: Members of Native American communities need to be involved in all aspects of the research process. HIV/AIDS prevention research must be sensitive to and address cultural norms, values, and conditions in Native communities.

Conclusions & Recommendations More funding should be directed toward the training and education of Native American students (at all levels) and community members in HIV/AIDS research endeavors. Funding for evaluation research on culturally competent HIV/AIDS prevention and treatment modalities must be a priority.

Collaborative Relationships Involve: Mutual respect for cultural knowledge, skills and behaviors Demonstrated professional ethics related to confidentiality of data and public dissemination of results Working through challenges Building Trust

Resources: u Julie Baldwin, University of South Florida. (813) u Rural Center for AIDS/STD Prevention u National Native AIDS Prevention Center:

Thank You Questions?