 |
|||||||
Chapter 1:
Introduction
Through its Special Projects of National Significance (SPNS) Program, the Health Resources and Services Administration (HRSA) funds national demonstration projects for HIV/AIDS services. The SPNS grant program is funded through the Ryan White Comprehensive AIDS Resources Emergency Act.
In 1993, HRSA awarded 10 three-year grants to projects targeting HIV/AIDS services to adolescents and youth. These 10 projects are relatively heterogeneous in that their programs range greatly in scope and planned outcomes. Nonetheless, the 10 projects all have common target groups for their services – specifically, adolescents and youth who are either HIV-positive or at-high-risk to become so. They also aim to build programs with the potential for wide replicability throughout the United States.
As would be expected in a national demonstration program, the 10 adolescent Special Projects of National Significance differ greatly from one another. For example, one of the projects (that in Bridgeport, Connecticut) seeks to develop trust among inner city minority youth and encourage them to be tested for HIV and to engage in HIV risk-reduction behaviors. Other projects – such as those at Children’s Hospital of Boston and on the opposite coast, at Childrens Hospital Los Angeles – seek to develop tightly linked networks of medical and social services for youth with HIV and youth at-risk-for-HIV infection. The project in San Francisco run by Health Initiatives for Youth seeks to enhance the local service network for young people with HIV by improving the overall service infrastructure. Bay Area Young Positives (San Francisco) is a program for youth with HIV staffed by youth with HIV. The project at the University of Minnesota works with young people who are identified through the registry of individuals with HIV maintained by the State of Minnesota, while the YouthCare program in Seattle works on the streets to introduce services to youth and youth to these services. While nine of the programs are focused on providing outpatient services, the program at Walden House in San Francisco is a residential care program for young people with HIV who are also in active care for their substance abuse.
While the projects differ from one another, a key element that underlies each is its use of outreach methods to enhance the program. This outreach takes different forms, but generally assumes modes of outreach to community agencies or organizations and outreach directly to members of the potential target population.
Agency outreach consists of a variety of activities in which the program enhances its ability to attract members of the target population for services by making relevant organizations aware of the model program and new services that it offers. In general, agency outreach is a way to reach large potential populations either through referrals or linked service networks. An alternative form of agency outreach through avenues such as health fairs may provide individuals with enough general information that they can self-refer themselves to the model program.
A second form of outreach is what may be termed individual outreach. In this form of outreach, staff from the model program directly contact members of the target population in more intensive forms of one-on-one contact. This type of outreach often involves having staff from the model program contact potential clients where they congregate on the streets or at other natural places for contacts. Such "street outreach" often consists of having a peer who is about the same age as the potential client present the characteristics of the model program to the prospective client. These outreach efforts are frequently conducted by individuals who themselves have received the services of the program. Individual outreach efforts may be characterized either as high-intensity or low-intensity.
In this report we will examine the strategies of agency outreach and individual outreach that have been used by the 10 adolescent SPNS projects. While these methods differ from program to program, the general principle that may be demonstrated from the experience of the 10 programs is that careful patterns of appropriate and consistent outreach are necessary to ensure that a relevant population of target youth are recruited into the model programs.
Characteristics of Youth with HIV Disease
According to the Centers for Disease Control and Prevention (CDC), 2,840 of the
reported HIV infection cases are adolescents between the ages of 13 and 19 (CDC, 1995).
The largest percentage of HIV-positive male adolescents are African American (53 percent),
followed by 40 percent who are Caucasian. An even greater percentage of HIV-positive
female adolescents are African American (73 percent), followed by 21 percent who are
Caucasian. The modes of transmission vary for female and male adolescents. Homosexual
contact accounted for the largest proportion (44 percent) of HIV infection among male
adolescents; 44 percent of female adolescents infected with HIV attributed transmission to
heterosexual contact.
For young adults, ages 20 to 24, the epidemiology for HIV infection is similar to that among adolescents. Among young adults a total of 11,740 HIV infection cases were reported through the end of 1995 (CDC, 1995). The male-to-female ratio for these individuals is 2.6:1. Almost all of the HIV-positive males are Caucasian (47 percent) or African American (45 percent). The largest percentage of females are African American (66 percent), followed by 27 percent who are Caucasian. Males most often attributed transmission to homosexual contact (53 percent) while females were most likely to attribute transmission to heterosexual contact (40 percent).
It is important to note that the figures concerning individuals who are HIV-infected are likely to underrepresent the full extent of HIV infection among adolescents and young adults. The data reported by the CDC (1995) only represent known cases of HIV infection in 26 states that have confidential reporting of HIV infection. Given that high seroprevalence states such as California, Florida, and New York currently do not report these data, it is likely that the number of HIV-positive young people in the U. S. is considerably higher than what has been reported to date.
For adolescents who are known to have AIDS, the figures are similar. According to the CDC, 2,354 of the reported AIDS cases are adolescents between the ages of 13 and 19 (CDC, 1995). The ratio of males to females among adolescents with AIDS is approximately 2:1. The largest percentage of male adolescents with AIDS is Caucasian (45 percent), followed by 33 percent who are African American and 20 percent who are Latino. The large majority of the females are African American (65 percent), followed by 18 percent who are Caucasian and 15 percent who are Latina. The most common modes of transmission among males are hemophilia (42 percent) and homosexual contact (33 percent). For females, transmission is most commonly attributed to heterosexual contact (54 percent) and injection drug use (16 percent).
Among young adults, 18,955 AIDS cases were reported through the end of 1995 (CDC, 1995). The male-to-female ratio for these individuals is approximately 3:1. Almost all of the males with AIDS in this age range are Caucasian (44 percent) or African American (34 percent) or Latino (20 percent). The largest percentage of females are African American (53 percent), followed by 23 percent who are Caucasian and 21 percent who are Latina. Males most often attributed transmission to homosexual contact (53 percent) and injection drug use (13 percent) while females were most likely to attribute transmission to heterosexual contact (40 percent) and injection drug use (31 percent).
Researchers such as Rotheram-Borus, Koopman, & Ehrhardt (1991), have found that homeless adolescents have HIV seropositivity rates that are higher than those for other adolescents. Also, Allen, Lehman, Green, and their colleagues (1994) found that among homeless adolescents, homosexual/bisexual male adolescents are more likely to be HIV-positive than those who are heterosexual. In their sample, they found that 32 percent of the homosexual/bisexual male adolescents were HIV-positive as compared to only 0.8 percent of the heterosexual male adolescents.
Hein, Dell, Futterman, Rotheram-Borus, and Shaffer (1995) compared HIV-positive and HIV-negative adolescents receiving care in a New York City medical center. They found that HIV-positive adolescents were significantly more likely to be sexually abused, to engage in anal sex, survival sex, and unprotected sex with casual partners, to have sex under the influence of drugs, to have a sexually transmitted disease, and to use multiple drugs.
HIV-positive adolescents face many barriers to receiving medical care and other needed services. Not only do they face psychological barriers, such as a distrust of adults and feelings of invulnerability (Goulart & Mandover, 1991), they also may face financial barriers – particularly homeless adolescents. Valdiserri, Gerber, Dillon, and Campbell (1995) found that among individuals visiting HIV programs at publicly funded health departments, those who were adolescents and HIV-positive were more likely to have no health insurance. Therefore, the Society for Adolescent Medicine has expressed the need for HIV-related services developed specifically for adolescents (Society for Adolescent Medicine, 1994). The society recommends that these services be available in settings where adolescents feel comfortable and that they include comprehensive services, such as social support and basic needs services. Other reports in this series address service-related issues for such youth, including outreach and interventions provided by the 10 adolescent SPNS demonstration programs.
Theoretical Model of Service-Delivery for the 10
Adolescent SPNS Projects
Figure 1.1 shows a schematic that describes the general relationship between group and
individual outreach activities in the 10 Adolescent SPNS projects and later provision of
HIV services. While this diagram does not perfectly fit each project, it closely
approximates the major designs of most of the projects, though not all of the projects
give equal emphasis to each of the steps in the model.
For each of the projects, the ultimate goals, as shown in Boxes F and G, are to enroll young people with HIV or at-high-risk-for-HIV and then provide appropriate services. Recruitment comes through referrals that are made from cooperating HIV service providers (Boxes C and E) or directly through the efforts of the project "on the streets" or in alternate settings. For those projects that recruit clients through service networks, the networks have been developed in two different, and not mutually exclusive, ways. Some projects seek to enhance existing service networks (Box A) so that they can provide a flow of appropriate target clients. For other projects (Box B), these service networks do not exist and must be created as part of this project. In most cases, both the enhancement of existing linkages and the creation of new ones can lead to referrals of appropriate young people in the program.
In this report, we focus on the stages of outreach which are summarized in boxes A-E of Figure 1-1.
 |
Figure 1-1. Description of the General Model for Services Delivery of the Adolescent SPNS Projects.
Cross-Cutting Evaluation
The 10 adolescent SPNS projects participate in a cross-cutting evaluation to address
common elements across the various projects. The cross-cutting evaluation is coordinated
by The Measurement Group, and was developed by The Measurement Group in collaboration with
the 10 adolescent SPNS projects and HRSA.
Main elements of the cross-cutting evaluation relevant to this discussion include five single-page forms, as described below. These forms utilize a fax-in system that allows data to be transmitted via fax from project sites in the field to a central data computer at The Measurement Group (Huba, Brown, & Melchior, 1995; Huba & Melchior, 1995). The incoming fax transmissions are interpreted by the computer and automatically added to a database that is analyzed using standard statistical programs. As a result, data are available for analysis within a few minutes of the time they are faxed to the evaluator. Therefore, management reports can be kept up to date to reflect the services provided at the 10 adolescent SPNS sites throughout that day.
The five fax-in data collection forms for the adolescent SPNS cross-cutting evaluation are as follows:
Contact Form. Contact forms are used to document the characteristics of individuals reached by the adolescent SPNS projects, including patterns of HIV-risk behaviors. These forms may be completed in the context of outreach, program enrollment, or to change or update information previously documented for individuals served by the projects.
Group Log Form. Group logs are used to record very brief, low-intensity outreach contacts with multiple youth at one time, in which it is not possible to obtain much information about their characteristics. Usually, these forms are used to record encounters with young people who are not yet formally enrolled in the SPNS project’s primary services. An example of services recorded on group log forms includes outreach that is conducted in bars or clubs where young people congregate. More intensive outreach contacts are recorded using contact forms.
Presentation Form. Presentation forms are used to document activities such as agency outreach and group presentations. As opposed to contact and intervention forms that record information about individual service recipients, these forms are used to summarize the presentation or activity itself. The number of participants and broad breakdowns of their ages and ethnicities also are recorded using this form.
Intervention Form. Intervention forms are used to record the services provided to a given individual who is formally enrolled in an adolescent SPNS project. This form codes the services provided during the encounter, who provided the services, which referrals were made, and what topics were discussed during the encounter.
Residential Form. Residential forms are used to document residential therapeutic community substance abuse treatment-recovery services provided by two of the adolescent SPNS projects.
In addition to the fax-in data system, a more extensive Brief Natural History Interview is conducted with program clients after they have been enrolled into services. The Brief Natural History Interview provides a detailed psychosocial assessment of the individual’s background, health, mental health, substance abuse, HIV knowledge, and other related issues.
An additional three forms were used to obtain information about clients six months after their completing the Brief Natural History Interview. These forms are:
Abbreviated Natural History Interview. The abbreviated natural history interview is a shorter version of the Brief Natural History Interview designed to be used as a follow-up. The interview is set up in sections that parallel the full Natural History Interview. Each section is marked as required or optional. As in the full baseline interview, "required" sections must be asked of all clients at all project sites. Sections designated as "optional" may be asked at the discretion of the local project.
Health-Related Quality of Life Form (optional; HIV-positive youth only). The Health-Related Quality of Life Form is intended to be used only with young people who are HIV-positive. This measure is the SF-21, a short form of a standardized health-related quality of life measure used in the RAND Medical Outcome Study of HIV/AIDS.
Karnofsky and Disease Stage Scale (optional; HIV-positive youth only). The Karnofsky and Disease Stage Scale is intended to be used only with youth who are HIV-positive. This form is used to record staff observations of the client.
Two optional forms were also implemented in a sweep of design with all clients participating in each program. With the "sweeps" design, each client is given the following two forms:
Client Satisfaction with Services Form. The client satisfaction with services form is administered to youth to assess their satisfaction with services provided by the SPNS program. In order to reduce response bias, postage-paid envelopes are provided so that forms may be returned directly to The Measurement Group.
Program Survey. The program survey is an optional one-page form to be completed anonymously by clients of SPNS projects. The form is used to demonstrate that the adolescent SPNS projects are helping to reduce barriers to youth in accessing medical, social, and other needed HIV-related services.
Although each of the adolescent SPNS projects has its own service-delivery model, the cross-cutting evaluation has been designed to be implemented in parallel ways across the 10 projects. In general, the single-page fax-in data collection forms are completed at the time of each contact or service encounter, or shortly afterwards. The Brief Natural History Interview is administered to youth after they have been enrolled in services, within one or two visits of initial enrollment. Because service episodes are tracked across time, the utilization of various services provided by the adolescent SPNS projects and referrals made within and outside of those networks are tracked as long as the youth is seen by the program. Follow-up assessments of indicators such as health status, risk behaviors, HIV knowledge, satisfaction with services, and related areas currently are being implemented by the 10 projects.
Implementation Timeline
The 10 adolescent SPNS projects were funded in October and December of 1993. In
January 1994, an initial meeting was held in Washington, D.C. to discuss common issues for
the 10 grantees and to build consensus for the cross-cutting evaluation. From this initial
meeting, and through a series of conference calls, the cross-cutting evaluation plan was
finalized through the collaboration of The Measurement Group, grantees, and HRSA staff.
Data collection using this system began in June 1994 and has continued through the
duration of the grants. Several projects back-filled data to December 1993.
In this report on outreach activities, data will be summarized mainly from the contact and group log forms (to reflect individual outreach) and the presentation form (to reflect agency outreach).
© Copyright 1998-2005 by The Measurement Group LLC. All rights reserved.