Conducting HIV/AIDS Conducting HIV/AIDS Prevention Research in Prevention Research in

Partnership with American Partnership with American Indian Communities: The Indian Communities: The

NAPPASA ExampleNAPPASA Example

Julie A. BaldwinUniversity of South Florida

Co-Risk Factors in the Spread Co-Risk Factors in the Spread of HIV/AIDSof HIV/AIDS Historical trauma, oppression,

prejudice, racism Poverty Lack of adequate & accessible

health care Geographic isolation Interrelated behaviors which

contribute to HIV/STD risk

Specific Challenges Related Specific Challenges Related to HIV/AIDS Prevention to HIV/AIDS Prevention ResearchResearch Fear of discussing sickness and

death Low perceptions of risk Taboos discussing sex and drug-

related behaviors Diversity within Native communities Concerns regarding confidentiality of

information and stigma

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

Prevention ResearchPrevention Research

Cycles of Input & Cycles of Input & FeedbackFeedback

Build & Sustain Collaborative Relationships

Plan & Design Program

Implement & Evaluate Program

Interpret & Disseminate Information

Build & Sustain Build & Sustain Collaborative Collaborative RelationshipsRelationships

• Foster dialogue• Develop trust and credibility• Form a community advisory board• Partner with change agents within

community

Listen to What the People Listen to What the People Have to SayHave to Say

Interviews local educators, elders, health service providers, and community people leaders youth parents

Janice Wilson

Cycles of Input & Cycles of Input & FeedbackFeedback

Build & Sustain Collaborative Relationships

Plan & Design Program

Implement & Evaluate Program

Interpret & Disseminate Information

Plan & Design ProgramPlan & 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 Focus Groups Designed to Elicit Information Elicit Information Regarding:Regarding:• Styles of local discourse• Communication patterns• Normative beliefs• Confidence levels in engaging in

preventive behaviors

Integrating Cultural Integrating Cultural Teachings with Behavior Teachings with Behavior Change MethodsChange 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 ApproachHolistic Approach

Mental

Physical

Social

Spititual

Mental

Physical

Social

Spititual

Social

Applying Effective Education Applying Effective Education Strategies Strategies (Hansen’s list)(Hansen’s list)

Information Decision making Resistance/Life skills Values Clarification Goal setting Self-esteem Norm setting Persistent assistance Lower risk alternatives

Before Program Design, Have Before Program Design, Have All Partners Discuss: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 & Cycles of Input & FeedbackFeedback

Build & Sustain Collaborative Relationships

Plan & Design Program

Implement & Evaluate Program

Interpret & Disseminate Information

Implement & Evaluate Implement & Evaluate ProgramProgram

• 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 TrainingInstructor 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 Explore Alternate Methods of EvaluationEvaluation• 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 RelationshipCollaborative 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 EvaluationsProcess Evaluations• Post-intervention

focus groups• Interviews with

administrators and instructors

• Community meetings• Staff monitoring and

rating• Instructors’ and

students’ ratings of sessions

Student AssessmentsStudent 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 & Cycles of Input & FeedbackFeedback

Build & Sustain Collaborative Relationships

Plan & Design Program

Implement & Evaluate Program

Interpret & Disseminate Information

Presentation of Evaluation Presentation of Evaluation Findings ... (Thurman, Findings ... (Thurman, 1995)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 Interpretation and DisseminationDissemination Partners collectively interpret the data 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 What did the partners create?create? First sustained AI AIDS/AOD prevention

program at school and community levels Two-stage Prevention Curricula (20+20)

with media enhancements, effective manuals, training materials, & evaluations

Research evidence of positive effects on reducing risks among youth

Many positive environment and organizational changes (set new norms)

Evidence of changing 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 Key findings: research with Native youthNative youth Prevention programming should start at

early ages, before the risk behaviors are initiated.

Successful prevention programs are built on the foundation of the family and transmit the cultural values held by the family.

Primary prevention will be most successful if the community provides a stable environment.

Elders are indispensable to youth because they are the transmitters of culture.

Implications of resultsImplications of results Our findings suggest the need to

look at different cultural, social and individual processes for risk and protective behaviors for different target groups.

HIV/AIDS is multifaceted and causal factors must be studied from a multidimensional perspective.

Conclusions & Conclusions & Recommendations: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 & Conclusions & RecommendationsRecommendations

• 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 Collaborative Relationships Involve: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:Resources:

Julie Baldwin, University of South Florida. (813) 974-6692 jbaldwin@health.usf.edu

Rural Center for AIDS/STD Prevention www.indiana.edu/~aids

National Native AIDS Prevention Center: www.nnaapc.org

Thank YouThank You

Questions?