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Expanding the range of interventions to reduce HIV among adolescents

Rotheram-Borus, Mary Jane

Structural Factors in HIV Prevention

Objective: Structural interventions are identified to reduce adolescents' HIV risk.

Method: The goals, strategies, approaches, and delivery sites of adolescent HIV prevention programs are reviewed.

Results: In addition to reducing sexual activity and substance use, HIV prevention programs may also reduce adolescents' HIV risk by: decreasing poverty; ensuring access to HIV testing, healthcare, general social skills training, and employment opportunities; and requiring community service for students. Adolescent HIV prevention programs do not currently utilize diverse modalities (computers, videotapes, television, telephone groups, computerized telephones) or sites (parents' workplaces, religious organizations, self-help networks, primary healthcare clinics) for delivering interventions. Diversifying current approaches to HIV prevention include: economic development programs; mandating delivery of programs at key developmental milestones (e.g. childbirth, marriage) and settings (school-based clinics, condom availability programs); securing changes in legislative and funding policies through ballot initiatives or lawsuits; and privatizing prevention activities.

Conclusions: To implement structural HIV interventions for adolescents requires researchers to shift their community norms regarding the value of innovation, adopt designs other than randomized controlled trials, expand their theoretical models, and adopt strategies used by lawyers, private enterprise, and lobbyists.

From the Department of Psychiatry and the AIDS Institute, University of California, Los Angeles, USA.

Sponsorship: This paper was completed with the support of National Institute on Drug Abuse grant R01 DA-07903 and National Institute of Mental Health grants R01 MH-49958 and P30 MH-58107.

Requests for reprints to: Dr M.J. Rotheram-Borus, 10920 Wilshire Boulevard, Suite 350, Los Angeles, CA 90024, USA.

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There is a substantial and increasing number of youths living with HIV, and youths are being identified as HIV-seropositive at younger ages [1]. The World Health Organization estimates that 50% of all HIV infections occur among youths aged 15-24 [2], and 18% of reported US cases are among 13-24 year olds [3]. Adolescent HIV infection in the United States increased 77% from 1991 to 1993 [4], with a cumulative total of 25 210 AIDS cases reported in the United States up to June 1999 [3]. However, it is estimated that there are 112 000-250 000 youths living with HIV in the United States [5,6]. Females represent an increasing proportion of seropositive youth, accounting for 49% of the cumulative total of HIV cases among 13- to 24-year-olds [3]. These statistics show that HIV is a significant and growing problem among adolescents.

To address this risk, research-based HIV-prevention program efforts in the United States have predominantly focused on small-group, multiple-session interventions targeted at youths at high risk for HIV. These programs have typically increased condom use by about 30% for up to 1 year [7]. Other successful interventions have delayed initiation of sexual intercourse for a few months [8], but have not changed the number of sexual partners or delayed the onset of sexual acts until marriage or even for a few years [9]. Substance use is typically ignored, and none of these successful research-focused interventions has been implemented nationally. Evidence from successful interventions for other adolescent health behaviors (e.g. smoking prevention, substance-use prevention, injury prevention, drunk-driving prevention, seat-belt use) suggest that we re-examine the behaviors targeted for change and substantially broaden the range, types, and delivery formats of adolescent HIV interventions to include structural interventions. The goal of this paper is to propose such innovations.

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Expand strategies to protect youth from HIV

In addition to skill-focused strategies for reducing sexual risk, HIV transmission can be reduced by expanding our prevention arsenal to include approaches to encourage sexual health that allow pregnancy and protection from HIV, implementing policies ensuring access to HIV information, testing, and care, and increasing training in general social skills.

HIV prevention programs typically help adolescents avoid HIV infection by increasing condom use. 'Positive sexual health' is not usually addressed in adolescent HIV programs in the United States, although other countries have such a focus [10-12]. Moreover, 100% condom use is incompatible with becoming a parent, a lifetime goal for most persons [13]. In order for youths to protect themselves against HIV over their lifetime, adolescent programs must broaden the options presented to them for preventing HIV and to allow for parenthood.

'Negotiated safety' [14,15] is one strategy that allows for parenthood and acknowledges the unlikeliness of 100% lifetime condom use. Condom use is consistent until a commitment to monogamy occurs. Mutual HIV tests are then conducted twice at a 6-month interval, after which condoms are abandoned in the primary relationship and used only with other partners. While negotiated safety allows for pregnancy, adolescents have limited experience of establishing intimacy and may lack the skills to implement condom use with additional sexual partners. Adolescents typically have serial or multiple partners [16] and infrequent sexual activity [17], therefore negotiated safety may be a less viable strategy for adolescents than it is for adults.

In addition to negotiated safety, rapid and youth-controlled HIV tests are technically feasible but only implemented outside of the United States. Similar to a home diabetes test, the technology exists for a person to squeeze a drop of blood on a card, add a reagent, and read the results of the test alone within 10 min [18]. However, adolescents in the United States cannot legally access these tests. The Food and Drug Administration has required third-party notification of HIV test results, raising the cost of test kits from a possible price tag of $1.60 per test to an actual price of about $44 per test [19]. Furthermore, the Food and Drug Administration has required that all new HIV testing technologies be accurate for all known HIV types, including Type O, which is a rare viral strain in the United States [20]. The Food and Drug Administration's regulations are consistent with biases of healthcare providers who worry about 'burden' on clients learning their HIV status privately [21], similar to the fears of providers 20 years ago when home pregnancy tests were introduced [22]. Finally, while the advocacy community has been vital to legislative and administrative HIV policy changes in other areas, the advocates' energy has been focused on opposing HIV name-based reporting systems rather than on securing early and cheap access to HIV testing. These requirements are significant barriers to client-controlled testing so that youths in the United States has not benefited from client-controlled testing, as have persons in other countries [23].

Among the estimated 112 000-250 000 seropositive youths in the United States [5,6], only about 7% are aware of their serostatus [3] and only about one-quarter of those aware of their serostatus have been linked to care [24]. It is likely to be at least 10 years before most HIV-infected adolescents become aware of their serostatus and are linked to care, similar to adults [25].

A number of scientific advances have heightened the importance of encouraging early detection of HIV [5,26]. However, many service providers are often hesitant to encourage HIV testing among adolescents, resulting in significant geographic variations in HIV testing rates among youths [27]. Providers are resistant at times due to regulations limiting adolescents' access to healthcare or antiretroviral medications, and due to discriminatory policies that may bar seropositive adolescents from housing [28]. For example, only four states allow adolescents to provide consent for HIV treatment themselves [28]. Systematic implementation of interventions with providers and policies ensuring access to HIV testing and to care for adolescents are needed in order to increase early detection of HIV among adolescents.

In addition, HIV among adolescents may be reduced by expanding intervention programs aimed at economic development and improving general social competency. HIV is highly correlated with poverty and the consequences of poverty [29]. Economic development programs offer one alternative for fighting poverty and HIV. Juma Ventures of San Francisco, California, is an example of a not-for-profit corporation that aims to employ disenfranchized, inner-city youths long term. Juma Ventures establishes successful business enterprises (e.g. ice cream shops, catering businesses) as vehicles to help young people obtain life skills, particularly interpersonal competency, which is associated with HIV prevention. An employee assistance program is available to employees that includes: working-parent services (e.g. child care), workplace counseling, a money management and saving program, soft skills development (e.g. work attitude), an educational assistance program, hard skills development (e.g. mathematics, reading), transportation assistance, crisis support (e.g. child's illness), and active referrals to substance-abuse treatment and healthcare services. The social entrepreneur approach is similar to tutoring programs [30] and 'I Have a Dream' Foundation programs (e.g. access to college education) [31]. Combating youth unemployment creates an opportunity for stopping HIV transmission by providing youths with more positive expectations regarding their future and concrete skills to obtain a bright future.

Interpersonal competency programs may also reduce adolescents' HIV risk [32]. Longitudinal studies examining the impact of early school-based intervention programs point to long-term reductions in HIV-related risk acts. For example, Hawkins et al. [33] found that involvement in a social skills-building program delivered in grades 1-5 is associated with substantial reductions in sexual-risk acts and alcohol use at age 21.

HIV prevention programs may also have a greater impact if schools enhance positive roles for youths; for example, by acting as community volunteers [34] or peer educators [35]. By early adolescence, children select their reference group (e.g. 'gothic', 'jock', 'hustler') [36]. The meaning and context of sexual-risk acts for a youth who self-identifies as 'gothic' versus the youth who self-identifies as 'jock' are likely to be dramatically different. The opportunity to influence a youth's choices of social identities is during preadolescence. Because early adolescence is also the window of opportunity for enhancing abstinence and delaying the onset of sexual risks [9], it is particularly important that HIV interventions aim to enhance positive social identities during pre-adolescence (e.g. encouraging youths to be 'jock' rather than 'punk').

Thus, economic development programs, general social competency programs, and interventions to promote prosocial behaviors (e.g. through community volunteering) are potential strategies for reducing HIV risk acts. However, such innovations do not ensure greater diffusion of HIV prevention programs unless there are legislative and policy mandates (e.g. structural interventions) for the implementation of these programs.

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Encouraging preventive interventions

Preventive interventions could be implemented for youths in specific settings (e.g. in school) and at key developmental milestones (e.g. when they obtain drivers' or marriage licenses, or give birth). More than 95% of youths aged 5-17 years are enrolled in school [37]. While 78% of states have mandated HIV programs [38], these programs almost exclusively focus on basic facts regarding infection (87%), but not correct use of condoms (37%) [39]. In addition, schools often do not have good models of how to disseminate, train, and monitor delivery of HIV programs, a factor that is consistently linked with ineffective outcomes [40]. When legislation mandates HIV programs, concurrent mandates for teacher training or methods for community input into securing the program are needed: the process of delivering interventions and deciding content of the HIV program must be outlined. In addition, sustained funding must be made available to implement such mandated programs.

Two types of structurally focused school-linked programs have demonstrated positive impacts on adolescents' sexual risk acts: condom availability programs [41-43] and school-based clinics. Condom availability programs in high schools have been found to increase the percentage of condom use during sexual encounters, including condom use at first intercourse, and yet the programs have not been associated with sexual activity. These results are impressive and indicate that immediate national dissemination of this strategy is warranted. Similar to knowledge of HIV, availability of condoms is likely to be a prerequisite for sexual safety, but not sufficient to consistently change most teens' sexual risk acts.

However, politicians and policy-makers have often voiced concerns regarding the 'meta-message' delivered when making condoms available. Some have argued that condom availability condones sexual activity and delivers a message of sexual hedonism rather than sexual responsibility. To avoid such meta-messages, some community elements have mobilized against condom availability programs [44]. Fortunately, this type of response is atypical. Only one state (Massachusetts) has adopted a policy recommending that school districts consider condom availability as part of their comprehensive HIV education programs [45]. About 33% (20 out of 62) of this state's school districts chose to implement condom distribution [46], suggesting the potential impact of policy recommendations and statutes on enhancing HIV prevention programs. Massachusetts may serve as a national model for other states to increase access to condoms and safer-sex strategies among adolescents.

Mandating the creation of school-based and school-linked clinics is a structural method of creating opportunities to create prevention programs for youths. About one-third of adolescents have no access to health services [47], including HIV testing. As of 1994, there were only 623 school-based clinics in 41 states [48]. While these clinics could potentially provide comprehensive HIV prevention services, only about 32% of these clinics made condoms available to students and 40% provided HIV testing [48]. If more school-linked clinics were directly connected to local primary healthcare providers, access to comprehensive services could be achieved.

Communities have attempted to build HIV systems-of-care that provide comprehensive, coordinated, and continuous care [49]. Schools are typically not included in this system. The HIV community has focused on specialized community-based agencies, many of which were established solely in response to the HIV epidemic [50]. As HIV becomes more medicalized, the role of these community-based agencies is shifting [51]. One potential role of these HIV-identified agencies is to provide HIV prevention programs to youths within non-HIV-identified institutions (e.g. primary healthcare, schools, churches). The development of community planning councils, similar to the planning bodies created for HIV services, are another potential venue for building interinstitutional networks, especially as HIV becomes more mainstreamed into existing primary healthcare systems.

Behavioral changes among adolescents could be executed by shifts in regulations and policies at the federal, state, and local levels. For example, national examinations for graduation from high school have been repeatedly discussed; passing examinations regarding sexuality, HIV prevention, and sexually transmitted diseases could be linked to key developmental milestones, e.g. licenses for driving an automobile or getting married, or high-school graduation examinations. While such interventions place burdens on individuals, it is in the service of the common good, and precedents have been set for competency requirements in other domains [28]. Thus, interventions could be enhanced with mandated delivery of dissemination of HIV-related education.

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Mobilizing communities and institutions

Two types of community-level programs have been demonstrated to successfully reduce risk for HIV among adolescents: (i) mobilization of leaders and citizens within a specific geographic locale; and (ii) social marketing programs that target specific adolescent subgroups (e.g. surfers, homeless, rockers). Community-level programs targeting tobacco prevention have been successfully implemented for youth [52]. In the area of HIV, community interventions with popular opinion leaders in housing projects [53] and gay bars [54] have been implemented. While research evidence supports these approaches, communities have not broadly implemented them, despite policy guidelines to local health departments and HIV planning councils. Sufficient funding and technical assistance are not available for program implementation. Systematically educating and orienting HIV planning councils to be knowledgeable about HIV research could increase adoption and dissemination of effective HIV prevention programs.

Social-marketing campaigns may also play an important role in HIV prevention efforts for adolescent in the United States. There has been no systematic evaluation of social-marketing campaigns for HIV at the national level, and only one regional program has been evaluated [55]. In contrast, at least 16 other countries have mounted national social-marketing campaigns for HIV prevention [56]. For example, in Switzerland, a national social-marketing campaign has been associated with a 48% increase in condom use, with no increase in sexual activity among 17- to 30-year-olds over a 10-year period. The rates of HIV testing have increased, and stigmatization of homosexuality and gays has decreased significantly [57]. At the same time, high-school students in the United States also report significant increases in condom use: a 7% increase in condom use among boys (now 63%) and a 13% increase among girls (now 51%) [58]. The increase in the United States is about one-third the size of the changes in Switzerland [57]; furthermore, the rate of consistent use of condoms does not appear to have increased in the United States. The United States has lost an opportunity to increase consistent condom use among adolescents by not instituting national social-marketing campaigns.

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Diversify and stabilize the funding base for prevention

Structurally addressing the need for long-term and stable funding is critical to achieving significant and long-term reductions in HIV-related risk acts among youths. There are at least three potential funding sources: redirecting existing funding streams, initiating new funding streams, and identifying methods to generate profitable revenues from prevention activities. The easiest way to redirect existing funding streams is to broaden the definitions of preventive activities currently in practice. For example, local Ryan White planning bodies could prioritize prevention activities for HIV-seropositive individuals. Through either administrative or legislative changes, broader definitions of HIV-preventive activities may ensure that a coordinated and comprehensive continuum of services is available.

Ballot initiatives and lawsuits are two strategies for generating sources of new funding for HIV activities, especially if they were to target persons and companies benefiting from sexual behaviors and illicit drug use. Similar initiatives have succeeded for other prevention services. For example, in California, recent ballot legislation levies a tax on cigarettes sales in order to provide funds for prevention services for protection of children's mental and physical health [59]. Similar taxes could be levied on drug companies from the profits the companies realize from highly-active antiretroviral therapy and other drugs for treating HIV-related illnesses. Drugs to enhance sexual performance (e.g. Viagra sales) or producers of adult films and paraphernalia may similarly be a source of funding for HIV: the desire for sexual intimacy and pleasure is the source of contracting the disease, and may be one solution for helping to stop the negative consequences of seeking sexual intimacy. With stable sources of funds identified, long-term planning and prioritization of HIV prevention efforts that target adolescents may result.

The delivery of high-quality and comprehensive health and mental-health care has been significantly aided by lawsuits against local, state, and federal governments. For example, a recent court case in California will lead to schools employing full-time nurses for severely disabled students [60]. Lawsuits have often moved treatments from the category of 'experimental procedures' to 'standard of care'. If prevention programs were seen as a 'right' for youth, rather than as an auxiliary service, the standard of care for adolescent medicine, as well as broad dissemination of prevention programs, would become routine in a variety of settings: public health clinics, private behavioral managed healthcare programs, and schools. Similar to the use of lawsuits, ballot initiatives could be used to increase access to prevention strategies. For example, the AIDS Healthcare Foundation is collecting signatures to place an initiative on the West Hollywood, California, ballot that, if passed, would require the city to distribute free condoms at local bars and restaurants [61]. Similarly, legislative policies mandating access for youth to self-controlled HIV-testing kits could change the rate of implementing HIV prevention behaviors.

Typically, HIV prevention programs have been publicly funded. In contrast, prevention programs for obesity, mental-health disorders, prevention of phobias (e.g. for fear of flying), and household injuries have been established in the profit-making world of private enterprise. One of the primary reasons for linking HIV prevention closely with the concept of sexual health is to create the opportunity to initiate companies such as Jenny Craig or Weight Watchers for sexual health. Publicity agents have sold basic preventive health behaviors such as brushing teeth or bathing daily as prerequisites to being a sexy person; condom use and routine HIV testing may be similarly 'sold' to the public, if the field redefines HIV prevention from disease prevention to maintaining sexual health. It seems likely that marketing firms could sell the general public on the need for 'sexual health' and 'responsible sexuality'.

If HIV prevention provides 'profits', far greater innovation and experiments will occur. In the drug industry, about 5000 drugs are proposed each year. Fewer than 25 of these drugs will make it to Phase III efficacy trials, and only one of these drugs will make it to production with approval of the Food and Drug Administration [62]. About 59% of the resources of drug companies are concentrated on Phase I and II trials. In the field of behavioral interventions, it is expected that each project is successful, and behavioral researchers are unlikely to be funded unless their research is perceived to be a Phase III trial. An unsuccessful intervention is likely to result in a far lower probability of future funding for an investigator, thus squelching innovative thinking, which requires risk taking. Private enterprise is one method of encouraging innovation and diversification in many areas.

Currently, almost all HIV-prevention programs have been delivered in small groups, with little experimentation in alternative delivery modes, such as using computerized games or programs, the telephone, individual sessions, or videotapes. These modalities have been successfully applied with other populations; for example, computer-assisted interventions have been used for patients with phobias, depression, obesity problems, eating disorders and diabetes [63-67]. HIV interventions have been successfully delivered with videotapes in the home for middle-class parents and adolescents [68]; yet, home-videotape interventions are not as acceptable to low-income families. Rarely are educational videos funded at a level similar to commercial products, and so they lack the quality and appeal of commercial products. Privatizing and making delivery of preventive interventions profitable will lead to the introduction of the principles of marketing research. The design and testing of prevention theories [69,70] suggest that broad experimentation must occur to develop programs that are adaptable, acceptable, and accessible to the general public. Because HIV prevention has been primarily in the purview of public health, far less attention has been given to the 'market' and the 'market economy' of HIV.

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Diversify prevention strategies

Similar to needed innovations in the delivery modalities, variation in the sites and persons delivering interventions is needed. To date, schools, adolescent-focused community sites (community-based agencies, treatment programs, housing projects), and specially convened group meetings have been most often used for delivering adolescent prevention programs [7]. However, shopping malls, movie theaters, workplaces, and primary healthcare settings may offer alternative sites and personnel for delivering interventions. For example, physicians can consistently implement preventive interventions that change patients' attitudes [71,72]. If prevention can be demonstrated to be cost-efficient for healthcare organizations, a new market will be created for prevention.

When the range of settings and persons delivering adolescent HIV interventions expands, the theoretical models underlying the intervention will shift. Currently, public health and psychotherapy models focus on changes in individuals' perceptions, attitudes, intentions, and skills. Typically, structural interventions have been designed by engineers, sociologists, and lawyers. The acceptability of different types of HIV intervention strategies among a range of providers, clients, and settings must still be identified.

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Shifting the trajectory of adolescent HIV prevention requires reframing goals, strategies, approaches, delivery sites, funding streams, and administrative policies for programs. In order to consider these alternative interventions, the greatest structural shift will be required among prevention researchers themselves. Currently, in order to secure funding, researchers must justify their program based on small, incremental improvements on previous researchers' work. Researchers are not rewarded for innovation. This norm must change.

Similar to successful stockbrokers, researchers must diversify their intervention portfolios. In addition to the subgroups of youth at highest risk for HIV, programs must be accessible, acceptable, and efficacious with youths that range in levels of risk, cultural background, age, gender, ethnicity, sexual orientation, and socioeconomic status. Providers of adolescent HIV prevention programs must include parents, providers in healthcare settings, shopkeepers, neighbors, clergy, and grandparents in their programs. Modalities must include individual sessions, computers, videotapes, the telephone, books, television situation comedies, and personal diaries. Settings must be equally diverse, such as subways and buses, coffee houses, clinics, shopping malls, workplaces, and beach parties. Substantial evidence supports the observation that information obtained through multiple channels is more likely to have an impact [73]. Such diversity will only be possible when the opportunities for mandating HIV-prevention programs at key developmental events (e.g. marriage), settings (e.g. community level programs), and funding sources (e.g. profiting from sexual exploitation) are implemented as a result of structural interventions (legislation, lawsuits, licenses, and administrative policies mandating interventions).

Current research evidence supports: the dissemination of condom-availability programs in schools and community centers; mandating the presence of school-based and school-linked clinics that can become sites for comprehensive HIV programs and HIV testing; the implementation of national social-marketing campaigns for adolescents; policies and statutes recommending consideration of condom availability programs in schools; interventions in specific geographic areas such as housing projects; and anti-poverty programs and adoption of HIV curriculum within the delivery of general prevention programs targeting interpersonal competency.

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Section Description

Based on presentations from Structural Barriers and Facilitators in HIV Prevention, a meeting sponsored by the Centers for Disease Control and Prevention on February 22-23, 1999

This publication is sponsored by the Behavioral Intervention Research Branch; Division of HIV/AIDS Prevention; National Center for HIV, STD, and TB Prevention; U.S. Centers for Disease Control and Prevention.

The Editors of this supplement wish to acknowledge the referees who provided peer reviews of the manuscripts.

Statements of individual authors may not reflect the position of the Centers for Disease Control and Prevention.


HIV; adolescents; interventions

© 2000 Lippincott Williams & Wilkins, Inc.