July, 2002
N = 35

In July 2002, a total of 35 telephone interviews were conducted, 24 with appointed or elected community planning group (CPG) co-chairs and eleven with Native CPG members, in thirteen states in order to complete a needs assessment for Natives involved in HIV prevention planning. States included in the study were: Alaska, Arizona, California, Minnesota, Montana, New York, New Mexico, North Carolina, Oklahoma, South Dakota, Texas, Washington, and Wisconsin. CPGs are organized in a variety of ways; those with the greatest representation of Natives were either Regional Advisory Committees (RACs) or Native American Advisory Committees (NAACs). Appointed co-chairs typically had served twice as long as the elected co-chairs. The learning curve for a new CPG member averaged about twelve months.

Co-chair Interviews
Five overarching and overlapping areas of need emerged from the interviews with the co-chairs. Each area was broad and contained relevant concerns for both the community planning process and the Native community. These areas were:

• Knowledge
• Motivation
• Support
• Representation
• Policies and Procedures

CPG

• Needs cultural competency regarding Native people, cultures, and community norms, reservation versus non-reservation issues, urban versus rural issues, and inter-tribal affiliations

• Need cultural competency regarding homosexuality and the two-spirit community.
• Need understanding of the CPG process in general.
• Need information regarding Native statistics and HIV - participants reported active participation in the CPG process was a direct result of having a strong and accurate knowledge base.
• Need to provide accurate and compelling information to tribal leaders to move group beyond complacency/apathy.

• Indian Health Service - their relationship to health departments, tribal entities, funding, health reporting.
• Health Departments - their role in the CPG process and their areas of responsibility.
• Centers for Disease Control - their relationship to Indian Health Service and funding streams.

CPG

• Need for willingness to address cultural boundaries that keep Native groups from fully participating

• Need community support for HIV prevention efforts, e.g. recognition of the problem of HIV within tribal communities; resources devoted toward prevention (time, personnel, interest.)
• Need clear understanding of the benefits of participation for Native groups, some groups do not recognize the need for HIV prevention in their community, do not see the effects of the CPG decisions within their community, etc.

CPG

• Should provide adequate orientations e.g. deliver information necessary to fully understand the CPG process, HIV prevention, and the goals and objectives of the CPG.
• Should foster role of co-chair as mentor - the participants reported a co-chair as their primary resource when needing additional information indicating that these individuals should be fully informed and prepared to act as mentors.

• Need validation/endorsement from tribal leaders or Native community regarding the importance of HIV prevention
• and their role in the process.

CPG

• Current perception that Native groups are adequately represented, however, turnover is high and retention is difficult so, often, the Native voice at the table is weak.

• Need equal representation of all tribal groups in NAACS/RACs
• Need equal representation among reservation groups.
• Need equal representation between non-reservation and reservation groups.

• Epidemiological reporting systems have problems relevant to the presentation of accurate information. There are inherent problems with ethnic misclassification. Additionally, individuals electing to test for HIV outside their county or state escape data collection for their community, further skewing the available data,
• Cross communication between the I.H.S. offices, tribal health departments, intertribal clinics, the state health departments and the CPG needs to be increased.

• Personal contact was the most effective method of recruiting Native Americans.
• Most of the states surveyed used the entire CPG membership to recruit by "word of mouth."
• Social service or health organizations that already had relationships with Native American populations were included in recruitment efforts.
• Advertisements in newspapers and/or television.
• Reliance upon regional organizations (RAC) to refer and/or provide representatives to the state CPG.
• Retention was a general problem and not unique to just the Native CPG members

• There appears to be a tremendous difference in the quality of participation between rural and urban Natives; rural CPG members are often overwhelmed by the amount of information and the intensity of the process.
• Urban Natives participate more and seem to have a higher level of comfort with the CPG process than rural counterparts.
• Representation appears to be "selective"; Native member(s) represent some tribes but not others.
• The Natives who are willing to participate on the CPG also represent their community on a number of other groups; they are "stretched thin."
• Native members seem to lack interest and trust in the process.

• 90.5% of co-chairs said that it was "very important" to target Natives in their HIV prevention plan; the remaining 9.5% said it was "somewhat important."
• 55% of co-chairs reported that CPG HIV/AIDS prevention efforts are coordinated with Native tribes and/or villages in their states.
• Identified barriers to coordination with tribes/villages were: the stigma of HIV/AIDS within the Native communities, lack of prioritization of HIV by Native organizations, lack of commitment by Native health corporations; Native groups feel that they "don't matter."
• The majority of co-chairs reported that they felt the Native American community was being adequately represented in their CPG.

• The learning curve for respondents ranged from 6 months to 24 months. 73% of the respondents said that it took a year or longer before they felt they understood their role on the CPG.
• Eight members (73%) did not feel Native people were adequately represented in their CPG plan and seven members (64%) felt that the application written by the Health Department did not reflect the needs of Native people.
• Seven respondents (64%) indicated that their co-chairs were supportive with five citing supportive qualities, 'being understanding' and 'willingness to listen' were cited as examples. Three said their co-chairs were not supportive and cited a "lack of voice" on the council, urban-focused actions, and exclusivity and elitism of the CPG as examples of non-support. These answers may indicate that feeling included, having a voice, are key to feeling supported and lead to involvement.
• 73% (8) of the Native members felt their voices and concerns were heard by the co-chairs. Eighteen percent (2) did not feel their concerns were heard. One said he didn't know how to stand up for himself] and the other said he felt the co-chairs were only giving lip service, no real support. Nine members (82%) felt that their voice was heard by their fellow CPG members.
• 73% (8) of those responding named a co-chair of their CPG as the person they would go to if they had a question or concern. One would go to another CPG member and one had no one to go to.

When asked what the best part was about serving on the CPG, eight of the respondents said it was being able to share or access information, networking and having a voice for their community.

The Worst of the CPG

When asked what the worst part was several areas emerged as issues that seem to have equal weight. Three of the respondents said that not feeling like they "fit in" or belonged ("urban process", "exclusive", "where do I fit") was the worst part. Three of the respondents said that the worst part was that the CPG process was slow and they received little or no gratification (internally or from others) for their time and efforts. Three of the respondents felt being the only Native person on their CPG was the worst part and three said that the time and traveling to meetings were the worst part.

Barriers to Recruiting CPG Members - Native Perspective

• Need for additional cultural knowledge or familiarity with the Native communities on the part of the CPG.
• Homophobia within Native communities.
• Misconceptions about HIV/AIDS in tribal areas or taboos on talking about sex.
• Difficult meeting logistics, e.g. isolated communities, long distances to meetings, lack of transportation or time.

Funded through the National Native American AIDS Prevention Center and the Centers for Disease Prevention and Control.