Accepted for publication in the Journal of Correctional Care.

Young gay men come to the Montrose area from many outlying areas to socialize with their peers. This implies that they come because the distance affords them anonymity; or conversely, there is no social outlet closer to their homes. The experience at XCYTE seems to indicate that once individuals are in the Montrose area, their interests are in patronizing the local clubs and bars rather than spending time at the XCYTE house. One reason could be that the program is non-alcoholic. However, this is an anecdotal observation.

While the MPower/XCYTE program has worked successfully in other cities, this was not the case in Houston. Even after a year of promotion, advertising, and outreach, the program was not able to recreate the social networking model that has been effectively demonstrated in Austin.

All of these offenders had been previously trained as peer health educators through a collaborative project of AFH, TDCJ, and UTMB. Peer educators were transported to one of the two host facilities (one female and one male facility), where they participated in workshops and presentations covering HIV, STD’s, and other infectious diseases particularly relevant to prisoners.

Peer educators also participated in a community health fair, with representatives from community based service organizations and pharmaceutical companies. Pre-test/post-test surveys administered to participants showed significant improvement on 22 of 28 items in 6 knowledge domains. Post-conference surveys administered to TDCJ staff and representatives from CBO’s and pharmaceutical companies indicated that the event was well received.

The event demonstrated the feasibility and effectiveness of such a collaboration among governmental agencies, community organizations, and private entities.

To recruit participants to the study, it was necessary to promote the study directly to the community through advertisements in weekly publications, monthly Native newsletters, and during powwows and other social gatherings. These efforts generated word-of-mouth promotion that ultimately garnered the most referrals. 100 self-selecting and self-identifying Natives were interviewed by researchers (56 females and 44 males), using a modified version of the HIV Testing Survey (HITS) instrument, and at the conclusion of the interview, received a $50 gift certificate to Wal-Mart. Of the 100 respondents, 2 were HIV positive.

Funded by the Centers for Disease Prevention and Control.

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

Knowledge

CPG

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

Native Groups

• 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.

Both Groups
Need clarification of roles and responsibilities of:

• 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.

Motivation

CPG

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

Native Groups

• 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.

Support

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.

Native Groups

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

Representation

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.

Native Groups

• 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.

Policies and Procedures

• 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.

Recruitment and Retention of Native Americans

• 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

Co-Chair Observations of the Quality of Native American Participation

• 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.

Co-Chair Attitudes Regarding Native American Participation

• 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.

Native CPG Member Interviews

• 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.

The Best of the CPG

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.

The greatest percentage of participants lived in District 1, were female (70%), aged between 18 and 61 years. The education levels were from high school/GED to graduate school, with the greatest percentage in the former category. The greatest percentage of participants was clerical/non-professional employees.

When asked to rank the importance of their affiliations in order of importance, the top four were: membership in a religious group (27.8%); American citizen (22.4%); member of Cherokee Nation (10.8%); and job (10.5%). 68.2% were registered to vote in tribal elections and 54.5% reported voting in the most recent election; 67.6% had never contacted a councilperson about a problem; 77.6% had never financially supported a candidate or cause; 47.7% had never attended a council meeting; and 651% had never campaigned for a candidate or issue.

Respondents were asked their opinion on the roles and responsibilities of the Cherokee Nation to the people and the primary response was to help with employment opportunities (55.4%), followed by health care and access to medications (53.4%); adult learning opportunities (49.1%), and care for the elders (45.5%). Conversely, when asked about the roles and responsibilities of Cherokee citizens to Cherokee Nation, the responses feel into four primary categories: individual’s responsibility to the community (72.6%); responsibility to the tribal government (62.8%), responsibility to self/family (30.5%), and responsibility to perpetuate the culture (26%).

Regarding the social capital factor of community communications, most participants reported an occasional exchange with neighbors, interacting through conversation, sense of commonality, willingness to seek advice and sense of loyalty to the neighborhood. In the event of an emergency, they were willing to call upon a neighbor’s assistance, but during the past year, seldom exchanged babysitting or watched property while a neighbor was away.

On domains regarding attitudes toward community government, the majority perceived the Cherokee Nation to be fair (52%), and responsive (39.6%). Most participants felt that people in Cherokee Nation could be trusted, but were neutral regarding ability of people to work together. Business leaders were perceived to be interested only in financial gain.

In regards to community action and involvement, most were in agreement with the importance of belonging to community organizations, attending civic meetings, and voicing opinions.

While the majority felt they lived in a safe neighborhood, the scores were generally lower in reported time spent volunteering, or involved in community problem-solving.

When asked to self-rate their knowledge regarding Cherokee history, most participants indicated a very low rating for general Cherokee history. This improved slightly when asked about knowledge of Cherokee myths, cultural practices, and beliefs. Overall, the lowest ranked category was Cherokee literacy.

When participants were asked about what they hoped to learn in the class, one of the overarching comments that accompanied specific topics was “truth” and the need to hear the true story of the Cherokee people in an unbiased manner. In general, they expected to learn about Cherokee history but many were seeking direction in applying the knowledge to life today.

Funded by the Ryan White Planning Council.

Discounting returned mail, 1,620 individuals received the survey; 261 completed and returned it for a 16% response rate. Seven people of mixed gender and race attended a focus group held at The Center for AIDS: Hope and Remembrance Project; six people acted as key informants and numerous others were available to answer questions when called; and finally, the HIV Services Department of Harris County provided information on contracts and monthly reports.

Client Concerns
Of the 261 responding to the survey, 55.2% (144) were males, 45.3% (114) females and 1.3% (3) transgendered. Slightly over half were African American (55.6% or 145), followed by 27.6% (72) White/Caucasian, 10% (26) Hispanic/Latino, and 2.7% (7) Native American. The ages ranged from 21 to 65, the average being 43 years. Most were disabled (67.3% or 171), the greatest percent (41.7% or 106) had monthly incomes of $532 or less and 16% (42) had on average two children less than 12 years of age living in the household. Although the greatest number of respondents were in the lowest income category that does not necessarily mean they had a more difficult time in getting medications than those with higher incomes. Those with higher incomes may have more difficulty qualifying for assistance programs and meeting eligibility criteria. Those with incomes between $533 and $1500 accounted for 54.4% of the respondents. Slightly over 40% were diagnosed with HIV between 1995 and 1999 and 93.7% have been prescribed HIV medications; 84.8% claimed adherence to medication regimen “usually” or “always.” 65.5% were taking non-HIV medications and the two top-ranked non-HIV medication were for treatment of depression (52.1%) and elevated blood pressure (36.1%). Roughly 80% of respondents got their medications from the clinic (59.2%) or pharmacy (40.4%) or both and these locations are convenient for them. 44.2% received medications through the state AIDS Drug Assistance Program (ADAP); 32.7% relied on a local organization for their medications; 20.4% paid for their medications; and 19% had Medicaid coverage. The required co-payments ranged from $0 to $150+ and the majority paid between $0 to $10 monthly. A greater percentage (30.6%) of respondents paid for their own non-HIV medications with an average monthly expenditure of $10. The self-paying respondents indicated problems with qualifying for eligibility as their primary barrier to obtaining HIV medication. Another barrier to care was lost paperwork. There were also numerous verbal and written comments about the lengthy wait times in pharmacy lines and problems with missing or incorrect paperwork.

Funded by the Ryan White Planning Council.

Clients
Of the 261 respondents to the survey, 42 or 16% indicated having at least one child age 12 years or younger. 85.7% (36) of respondents with children were female and 14.3% (6) were male. African Americans were the largest group (73.8% or 31), followed by Hispanic/Latino (11.9% or 5), White/Caucasian (9.5% or 4), then Native American (4.8% or 2). The majority of parents were not working outside the home (59.5%) and 50% were disabled. 69% of respondents with children had gross monthly incomes of $750 or less. These 42 families accounted for 91 children aged 12 years or younger and averaged two children per household. The average age of the children was 6 .7 years. 52.4% of adults were diagnosed with HIV between 1995 and 1999 and 2.2% (2) of the children were HIV positive.

Friends and family were most frequently mentioned as childcare providers and the need for childcare averaged 2 times per month. Clients reliant on family and friends do not typically make contingency plans for those days when no one is available to help out. The on-site drop-in childcare service is not well designed to accommodate last-minute childcare needs and at three of the four sites where care is provided, a client must call ahead and schedule childcare services.

45.2% of respondents had their own transportation and another 28.6% had access to transportation. Only 9.5% (4) used transportation provided by the day care center. 44.9% had missed medical appointments due to lack of childcare. 21.4% had used drop-in childcare, 7.1% had used the in-home childcare reimbursement program and 14.3% had used the all-day services. Over 70% of survey respondents report that they do not know about the available childcare services, do not know how to get the services, or do not understand how the service works. Although the clients who had used the service became aware of it through pamphlets at the childcare site or through a case manager, the majority of clients who qualify for the service still are unaware that it exists.

The parents who use the on-site drop-in childcare facilities are usually at a medical appointment when the child/ren are in care. The majority is Hispanic, have very low incomes and have indicated that they do not have money to spend on childcare and would have no alternative if it were not provided at the clinic. The parents who use the childcare most are mothers, both single and partnered women.

64.8% of children of respondents were over five years of age and in school. Participants reported a need for after-school care for days when medical or social service appointments extend late into the afternoon. They also voiced a need for respite care to take care of other family responsibilities e.g. laundry, grocery shopping, etc. People need information about services in Spanish and it should include specific information about childcare policies and discipline. Focus group participants cited a need for weekend and evening hours and more locations near other clinics. Key informants reported problems with the application paperwork, concerns of confidentiality, and suspicion regarding the amount of information required to care for an affected child.

Funded by the Ryan White Planning Council.

For comparison purposes, the period from March 1999 through January 2000, the average daily number of clients receiving services was 32. Of these clients, 84% (27) were male and 16% (5) female. The race/ethnicity of the population was 44% (14) African American, 31% (10) White, 21% (7) Hispanic, and 4% 91) Asian/Pacific Islander. Ages of the majority of participants (80.6% or 26) fell in the 20 – 45 years range, with 19.4% (6) being older than 45 years. Utilization of the ADC program services increased from the period of March 1999-February 2000 to March 2000- February 2001. Although the average daily attendance has increased by only 1%, total units of service increased by 6% and total hours of service by 12%, indicating clients are receiving an increased number of services or the services have increased in duration. At the current level of utilization, current funding from Title I will be exhausted by May, 2001 with three months remaining in the fiscal year indicating a need for increased funding in future years.

Review of Agency A charts and interaction with the clients indicated that the reasons for enrollment in the program were not always dependent on the stage of HIV disease, but rather were associated with the severity of the disability and the relative ability of self-care. Some of the disabilities noted were HIV-related brain damage, HIV-related blindness, dementia, congenital blindness, mental retardation, severe mental illness and brain damage resulting from a gunshot wound.

Over 40% of the clients in the study have less than 200 CD4 cells for all months except the third month after starting the ADC program. The fact that the level of CD4 cells is less than 500 for 70% or more clients in the study for all months, both prior to and following enrollment in the ADC program, indicates that the majority of clients have had HIV for some time and have progressed in the disease process. It may be assumed that the clients enrolled in the Agency A Adult Day Care Program by and large have multiple, complex health problems that require regular, careful monitoring. In the comparison of viral loads for those with data, 40% had undetectable viral loads, suggesting that the referral by the physician into the ADC program was based upon more than HIV health status alone. There was a relative change in the occurrence of opportunistic infections after program enrollment, improving 32.21%. This may be a significant indicator of improved health status related to better patient compliance with medication and regular health assessments that occur at the ADC program.

Of the six hospitalizations reported in the study, at an estimated expense of $105,600 according to recent research that indicates an average hospitalization for someone with HIV is $17,600 per visit (AIDS Alert, Vol.16, No 2, p26), five occurred prior to entering ADC. The sixth episode was a non-HIV related ER visit. This may be an indicator that hospitalizations can be averted with consistent day care as well as a good indicator of the positive health impact of an adult day care program.

In regard to the QOL component of the study, social activities and creation of new friendships were high on this list as it would be likely that those to whom these issues were important would enter a program like this. The findings show that exercise, which was rated as “improved” by 69.2% of clients, and physical health, rated as “improved” by 64% of clients, are two areas in which the many of the clients have significant disabilities.

There was a 5-way tie for the highest percentage of satisfaction; the areas of food/meal quality, food/meal quantity, variety of activities offered, number of days the program is open, and the general treatment of the clients all received high ratings from 72% of the clients. When asked what they liked most about the Program, 50% of the clients answered that it was their relationships with other clients.

Funded by the Harris County Ryan White Planning Council.