ENGAGEMENT AMONG URBAN NATIVE COMMUNITIES AND HIV CLINICAL RESEARCH - - PowerPoint PPT Presentation
USING A PARTICIPATORY MODEL OF ENGAGEMENT AMONG URBAN NATIVE COMMUNITIES AND HIV CLINICAL RESEARCH SITES: A CASE STUDY Michaela Grey (Din), MPH Katie Osterhage, MMS Jessica Velcoff, PhD Matt Ignacio (Tohono Oodham), MSSW 2013 USCA New
2013 USCA – New Orleans, LA September 10, 2013
Name Where you are from Role in community or agency
Indigenous communities free of HIV where health,
To eliminate HIV/AIDS and confront related health
Works nationally with communities that have been
www.hanc.info/legacy/.
1.
2.
3.
Prevent Infection Delay Disease
Reduce Transmission Healthier Communities
What does HIV Clinical Research do?
Estimated Diagnoses of HIV Infection among Adult and Adolescent American Indians/Alaska Natives by Transmission Category and Gender, United States (CDC, 2011)
In 2011, 37% of Native women who acquired
This is the highest percentage of IDU acquisition among
women of all races and ethnicities.
The number of new HIV infections among American
This is the greatest percent increase in new infections when
compared to all other races/ethnicities.
HOW DOES HIV/AIDS AFFECT THE NATIVE COMMUNITY?
Native Hawaiians/Other Pacific Islanders and American
Indians/Alaska Natives had the 3rd and 4th highest rate of new HIV infections, respectively. By the end of 2008, the rate was 22.8 per 100,000 persons for NHOPIs and 11.9 per 100,000 for AI/ANs.
Of persons who were diagnosed with HIV, AI/ANs had that shortest
Of persons who were diagnosed with HIV, almost 30% progressed
to an AIDS diagnoses in less than 12 months.
High Impact Prevention! Supported by 2010 National HIV/AIDS Strategy:
Components of strategy are…
Scientifically Proven (ART, P4P
, Drug Tx., CTRS)
Cost-Effective Scalable (wide-spread)
Biomedical interventions Targeted towards those at highest risk In geographic areas “hardest hit”
“The use of disease as a strategy of colonization, a history
medical treatment has left many AI/AN individuals and communities distrustful.” (Duran &Walters, 2004) “People want collaborative research that is meaningful to the local communities…They don’t want ‘helicopter’ research anymore where people from the outside the tribe come into the community, collect their data, and then fly out with only the dust left. There is no data, no results and no discussion
(Tom-Orne, 2012)
Barrow Alcohol Study (1979) Havasupai Diabetes Study (2004) National Geographic Genetics Study (2006)
Seattle (2011) Denver (2011) Chicago (2012) San Francisco (2012)
Building meaningful relationships between:
Legacy Project and NNAAPC Local CRS, Native community and NNAAPC Local urban Native community, CRS and NNAAPC
Not recruiting for clinical research!
Goal: Help increase awareness of HIV clinical research among
Native communities
Goal: Help increase awareness of Native communities among
researchers
Ensure that Native community members have the opportunity to
participate in HIV clinical research and benefit from biomedical breakthroughs
Rooted Community-Based Participatory Research (CBPR) and
Participatory Action Research (PAR)
Key: Establishing reciprocity and sustainability
Research and action must be done ‘with’ people and not ‘on’ or ‘for’ people.
Kemmis and Mc Taggert (1988)
Eliciting Stakeholder Buy-in & Feedback
with Leadership,
Mixed Methods Evaluation
Process Evaluations,
Quantitative data Stakeholder involvement throughout process
Consultants,
Interpretation, & Dissemination
Reciprocal Education
Training,
Training Meetings and Events
American HIV/AIDS Awareness Day,
Long Term Planning & Resources
Template,
2 Focus Groups: 16 ppl. Denver, 6 Seattle 4 Individual Interviews with CRS: 2 Denver, 2 Seattle 115 Surveys: 54 Denver, 61 Seattle
2 Focus Groups: 14 ppl Chicago, 17 ppl San Francisco 5 Individual Interviews CRS staff, 2 Chicago, 3 San
Francisco
121 Surveys: 61 Chicago, 60 Chicago
Barriers to Effective Engagement
Stigma toward PLWHA Stigma toward LGBT/Two-Spirit Community Mistrust of medical providers Silence about sex
Facilitators of Effective Engagement
Strong Sense of Community Desire to Address HIV/AIDS Disparity Emphasis on Community Health and Wellness
Components of Effective Engagement
Straight Forward Approach Intergenerational Gender representation and diversity Consistency/Visibility, “come to us.” Native Representation/Leadership Incorporate culture Incentives
Continued funding beyond the
pilot phase
Formal relationship between
researchers & local Native community
Increased participant retention
in clinical trials (San Francisco & Denver)
Standard Cultural Humility
Training now exists
Option for linkage to medical
care
Empowered community
members to speak about clinical research
Finished Guidance document
for conducting another project similar to NAEHCR
Discussing NAEHCR Project &
treatment advances removed the stigma associated with HIV
CAB membership