H. SELECT COMMITTEE INTERVIEWS FIND PREVENTION PROGRAMS NEED FUNDING AND TECHNICAL ASSISTANCE TREATMENT IS LIMITED, AND NETWORKING IS CRITICAL TO PROGRAM SUPPORT Guidelines for HIV prevention programming have strongly encouraged community involvement. However, the Select Committee has heard reports of subtle and active resistance to preventive education and other preventive services. For this reason, Committee staff conducted key informant interviews with 29 individuals currently providing prevention services across the country. The interviews focused on community participation, apathy, and resistance in an attempt to document strategies that encourage positive contributions from the community. Appendices D-H provide a description of the methodology used in the key informant interviews, additional interview results, the interview questions, a list of technical advisors, and the list of respondents. MAJOR INTERVIEW FINDINGS TEEN ACCESS TO HIV PREVENTION AND TREATMENT SERVICES IS LIMITED AND UNEVEN. In rural and suburban communities that lack ethnic diversity, few HIV services targeted youth. Here HIV prevention programs, already understaffed and underfunded, shouldered the extra burden of providing additional services such as individualized counseling for drug abuse. Sixty-five percent of the programs reported unmet needs for general health services, drug treatment, or family planning for adolescents in their communities. High unemployment and high dropout rates predicted a general lack of support for prevention programs. Where unemployment was high, HIV prevention networks had been established for shorter periods of time, and HIV services for all age groups were sparse. Programs were likely to target out-of-school youth, but they received little support from schools and churches. More parents in communities where unemployment was soaring barred their children's participation in prevention programs. Communities reporting few AIDS cases thus far ignored the opportunity to prevent HIV infection. Although cases of AIDS in 13-24 year olds have now been reported in 49 states and the District of Columbia, few HIV services and less sophisticated prevention programs existed in places where incidence is considered low. Only limited efforts were made to serve out-ofschool youth in low-incidence areas, and use of outside experts for evaluation was rare. Sample Quotes from Interviews Funding at the Federal level specifically designated for AIDS Washington Heights has the highest population of young The largest unmet need for services is child abuse prevention. On any given day, there are between 1,600 and 1,800 and two full-time AIDS educators for the whole state system APATHY IS A GREATER PROBLEM THAN COMMUNITY Only one program reported heavy resistance from the community, but nine reported significant apathy. Resistance was feared, but not experienced, in several cases. Students were actually barred from HIV education classes by their parents in only four communities. Denial of risk is a problem that more than 80% of programs have faced. Fears that HIV and AIDS information would increase risk were encountered by 67% of programs. A barrier that was often coupled with high resistance was the tendency to "shoot the messenger" who bore news of AIDS risk. Controversy meant visibility, and presented an opportunity to raise awareness. Paradoxically, active resistance to HIV education was linked to greater community-wide support and participation in prevention efforts. Ultimately, widespread apathy may be worse news for prevention than some initial resistance. Sample Quotes from Interviews In 1985, a colleague of mine in juvenile health care died [We need] information about the spread of the illness-- a crisis. Most of them are thinking that this disease is very We encountered some concerns on the parts of teachers in The local political leadership fully understands the need to do SNOWBALLS: CAREFUL PLANNING, SUPPORT AND PARENT INVOLVEMENT ARE THE SUCCESS THE SUCCESS OF HIV AND AIDS EDUCATION AND PREVENTION. Planning a successful prevention effort requires time. Prevention program planners (most often motivated by high exposure risk, a need to debunk AIDS myths, or low community involvement in prevention efforts) spent an average of nine months developing programs. Parents should be involved from the earliest stages of program planning. Less concern about community involvement was felt if parents participated in the planning process. Of 29 prevention programs interviewed, only two failed to report some parental involvement, and these programs served youth in out-of-home placements or runaways. Prevention programs that belonged to an HIV network cost less and could use "rifle" approaches instead of "shot-gun" methods. The longer a network had been organized, the less prevention programs cost. Membership in networks was also linked to tailoring approaches to the specific needs of various community segments (e.g., approaching parents through the PTA, teenoriented legal and social services, and sliding scale fees). Every prevention provider belonging to a network said that membership helps accomplish the program's goals. In the following percentages of cases, network functions included: funding (58%), planning (84%), outreach (79%), and service delivery (72%). In 47% of the cases, network functions also entailed: referral, staff/teacher training, documentation of need, provision of information and materials, and advocacy. In the absence of specialized AIDS services, networks helped tap unusual resources. In communities with little population diversity and few AIDS services, network members performed more functions. The media were more likely to belong to the HIV prevention network, and, as media involvement increased, community apathy decreased. Community-based support for HIV prevention snowballed. Parents were more supportive as support from school officials grew. School officials were more supportive when local churches joined HIV networks or when state government became involved in programming. Support from business leaders increased as programs penetrated the suburbs, and as political leaders and other community organizations came on board. Local political leaders lent increased support when prevention programs were part of a coalition of supportive groups, especially when the coalition included medical personnel and media. Sample Quotes from Interviews Have patience. It's more than just educating teens--the key |