Youth-to-Youth–Peer Workers in HIV/AIDS Youth Programs: A Peer Development Guide

Overview of HRSA/HAB's SPNS Adolescent Care Projects

In 1993, the Health Resources and Services Administration (HRSA) Special Projects of National Significance (SPNS) Program funded ten national demonstration projects focusing on youth and adolescent HIV/AIDS services. These projects are relatively heterogeneous and range greatly in scope and planned outcomes. The ten projects do, however, all target adolescents and youth who are either HIV-positive or at high-risk for HIV infection. They also share the goal of building programs that can be replicated in communities throughout the United States. Furthermore, nine of the projects utilize peer educators or peer workers to reach, attract, and retain youth in care.

The projects funded through this SPNS Program are: Bay Area Young Positives (San Francisco, California); Children's Hospital of Boston/Boston HAPPENS (Boston, Massachusetts); Childrens Hospital Los Angeles (Los Angeles, California); Health Initiatives for Youth (San Francisco, California); Greater Bridgeport Adolescent Pregnancy Program/Teen Outreach Primary Services (Bridgeport, Connecticut); Indiana Youth Group/Youth Access Project (statewide in Indiana); University of Minnesota/Youth and AIDS Project (statewide in Minnesota); University of Alabama/Teenage Access Project (Birmingham, Alabama); Walden House, Inc. (San Francisco, California); and YouthCare (Seattle, Washington).

Seven of these projects have collaborated to assemble this guide of the best practices and lessons learned from programs that use peers to support young people with HIV.

Lessons Learned from the Ten Adolescent Care Projects That Involve Youth Staff in the Development and Delivery of Services

Youth staff involvement in client outreach, program management, and other psychosocial interventions play a key role in the development and delivery of HIV services. While youth staff’s roles and responsibilities vary greatly among the projects, they all have identified youth involvement in the development and delivery of program services as being key to ensuring that young clients utilize more services, such as HIV testing and referrals to medical or psychosocial services. Table 1 describes services provided by the projects, organizational structures, comparisons of youth and adult roles in development and delivery of services, as well as advantages and challenges that result from youth involvement. Summaries of the key advantages and challenges of youth involvement experienced by the projects are highlighted below.

Advantages of Youth Involvement

Consumer Insight & Perspective. Projects found that using peer staff resulted in unique insights and perspectives from current or past clients. Youth staff’s insights and perspectives were used to develop effective programs and program materials, as well as to better identify and address program barriers and the needs and desires of the youth served.

Client Retention. At a time when the successful medical management of HIV disease is increasingly possible, the retention of clients in HIV programs is a key element to positive health outcomes. Youth involvement was strongly linked to clients’ ability to utilize care and increased likelihood of program retention. This success is in large part due to the fact that the project staff are the same age as the young people they are targeting.

Clients Served Have A Closer Connection to Young Providers. Young people are a vital source of information about youth needs. Programs that utilize youth staff tend to address young clients’ needs and concerns more sensitively and accurately. Youth often perceive their peers as being a safer and more understanding source of information. Projects employing youth as outreach workers, for example, were successful in reaching HIV-positive and high-risk youth and linking them to age appropriate care.

Service Locations are Youth Sensitive. Youth are far less likely to access services in settings that do not make them feel safe and comfortable. Youth involvement enabled projects to develop youth-friendly and sensitive service settings that reduced access barriers found in many traditional youth service settings.

Challenges of Youth Involvement

Making Youth Involvement a Meaningful Experience. Providing meaningful experiences for youth staff in all projects was one of the greatest challenges encountered. Responding to this challenge required extensive support, supervision, time, and resources for all staff, young and old.

Staff Development. Meaningful youth involvement requires time and resources. Support and supervision of staff is an extremely time-intensive enterprise. Some of the most effective staff development was a result of partnering between youth and adult staff in program design. Staff recruitment involved prioritization of a thorough skills and aptitudes assessment. Some projects found that youth staff who were most like their target population (and possibly the most able to provide honest insight and feedback) often lacked the education and basic skills required to function effectively in the workplace. Therefore, individualized professional development plans needed to include basic vocational counseling and job skills training, anger management, and literacy skills building. Agency staff needed to be well skilled in the provision of these services, as well as committed and available to provide them.

Table 1. Description of Model Services Provided by the Adolescent Care Project and Issues Related to Youth Involvement

Program

Description of Model Services

Youth vs. Adult Involvement in

Development and Delivery of Program Services

Advantages of Youth Involvement in

Development and Delivery of Program Services

Bay Area Young (BAY) Positives
  • BAY Positives is a peer-run, non-profit organization providing the following services to youth with HIV up to the age of 26 years:
  1. Support groups;
  2. Counseling, health, and mental health services;
  3. Recreational events programming; and
  4. Training and job skills development.
  • Clinical Consultants give Member Advocates (peer case managers) support on providing quality services.
  • Group clinical support for facilitators of support groups is available.
  • Outside facilitators run a wellness program for staff, which includes meetings on interpersonal working relations between staff and their issues.
  • Youth have a stake in the agency and the programs that directly affect them.
  • Youth feel included in the process of the agency and its future.
  • Youth involvement often leads to the creation of new programs that are intended for their peers and themselves.
Children’s Hospital of Boston, Boston HAPPENS
(HIV Adolescent Provider & Peer Education for Network Services) Program
  • Boston HAPPENS provides a network of care to HIV-positive, homeless, and at-risk youth with the following components:
  1. Outreach and risk reduction counseling;
  2. Life management counseling;
  3. Health status screening and needs assessment;
  4. Comprehensive multi-disciplinary care;
  5. Follow-up and outreach for retention; and
  6. Integrated care among providers in Boston.
  • Youth are involved in the program as:
  1. Peer Educators;
  2. Youth Coordinators;
  3. Youth Advisory Board members; and
  4. Participants in focus groups.
  • Youth have contributed to developing and providing a program that is sensitive to the needs of young people in a youth-friendly environment.
  • Youth/consumer insight into the program and service delivery is valuable.
  • Youth are able to hear from their peers about services and risk/harm reduction services.
  • A youth-friendly environment is created.
  • Program has community presence and visibility.
  • Program provides care where youth want to access services.
Childrens Hospital Los Angeles (CHLA),
Risk Reduction Program
  • CHLA seeks to enhance services for HIV-positive youth in Los Angeles County and link them to services through an integrated clinic for youth that provides:
  1. Comprehensive health care;
  2. STD testing and treatment;
  3. HIV testing, care and treatment; and
  4. Case management and mental health services.
  • Youth assist in development and implementation of outreach strategies.
  • Youth are involved in developing and implementing outreach and retention services, providing trainings to agencies on youth issues, and improving clinical environment.
  • Youth are involved in leadership roles in the development of a Youth Subcommittee for the Los Angeles County Adolescent HIV Consortium.
  • Young adults are actively involved in the development and delivery of health education and outreach services to youth in the community.
  • Youth/consumer insight and experience can be used to develop more effective programs and associated materials and to help understand and address program barriers.
  • Patients and program participants like seeing "people like me" on staff.
  • Having youth on staff makes older staff more aware of how some actions and attitudes displayed in the work place can be unintentionally offensive to or disrespectful of young people.
Greater Bridgeport Adolescent Pregnancy Program (GBAPP), Inc., Teen Outreach and Primary Services (TOPS) Project
  • The TOPS Project provides outreach to HIV-positive and high-risk, inner-city minority youth, as well as to agencies.
  • Linkages are made to health care and social service agencies.
  • The goal is to identify hard-to-reach youth at-risk for HIV or currently unidentified in order to encourage testing and linkage to medical service providers.
  • Additional community activities ensure that youth maintain linkages with the project and network.
  • Youth and young adult staff members are responsible for development and delivery of program services.
  • Senior staff members handle agency contacts, peer development and training, and work closely with the Program Director to ensure quality of services.
  • Service locations are youth sensitive
  • Youth and young adult staff members have buy-in and their role is meaningful.
  • Activities are developed by peers to attract youth to the program.
  • Clients are identified and can participate in the program.
  • Positive peer and senior staff member relationships are developed.
Health Initiatives for Youth (HIFY)
  • HIFY provides youth-centered services, resources, and skill building programs.
  • Staff provide education, outreach, and advocacy activities to youth at risk for HIV or currently unidentified to encourage testing and linkage to services.
  • Dissemination of information and advocacy encourage development of appropriate sensitive services for HIV treatment.
  • HIFY’s goal is to expand services for HIV-positive youth and cut barriers to HIV care.
  • Youth and young adult staff have the primary responsibility for the development and delivery of all program services.
  • The Program Director and Assistant Director (who are young adults) work closely with the Executive Director (an adult) to ensure quality of services.
  • Programs are supported by other HIFY staff and outside consultants.
  • Youth manage most aspects of program operations.
  • Youth/consumer insight and perspective is included in the development and delivery of services.
  • Youth and young adult staff have program buy-in.
  • Supportive adult-youth partnerships are created.
  • Clients served have closer connections to young providers.
  • Client retention rates are high.
  • Service location is youth-sensitive and safe.
Indiana State Department of Health Indiana Youth Access Project (IYAP),
Indiana Youth Group (IYG)
  • IYG is a youth services organization that supports and educates gay, lesbian, and bisexual young people and advocates on their behalf.
  • IYG provides opportunities for young people to grow and develop.
  • Supportive services and crisis intervention to young people and their families are provided.
  • IYG strives to provide a safe, inclusive, confidential environment and serves as an advocate for young people by providing training, information, and referrals.
  • Research-based programs and services are provided.
  • Young people are responsible for IYG’s program development and implementation with support from adult staff.
  • The program receives input regarding programs and services through regular participation of young people via surveys and peer development focus groups.
  • Quarterly meetings also are offered as a way of discussing IYG’s program and service needs.

· Recognizing the importance of support versus sustenance, IYG adult staff strive to allow young people the opportunity to create an organization in which they grow and develop according to the program and service needs they have identified and helped develop.

· By allowing peers to identify, plan, develop and implement their own programming, organizational staff can offer important support allowing for growth and leadership development among its youth population.

University of Alabama at Birmingham, Teenage Access Project (TAP)
  • TAP was developed to expand access to health and support services for disadvantaged, HIV-positive and at-risk adolescent females, including:
  1. Outreach to community agencies;
  2. An access line for information, enrollment, and access to TAP staff;
  3. Small groups form risk reduction and empowerment activities for young women; and
  4. Clinical center for HIV testing, pre- and post-test counseling, risk assessment, and referrals.
  • No formal mechanism for youth involvement in development and delivery of program services.
  • Not applicable.
University of Minnesota, Youth and AIDS Project (YAP)
  • Adolescents with HIV are identified through the existing system of mandatory, name-linked reports of HIV cases to the Minnesota Department of Health.
  • The department dispatches an adolescent early intervention specialist to assess health care needs and link youth with comprehensive care at YAP.
  • These youth also are offered traditional public health services such as education and partner notification.
  • The program receives input regarding services from surveys, focus groups, and one-on-one interviews with clients of the program.
  • YAP conducts ongoing assessments and evaluations with youth that provide input on the services provided.
  • Service location is youth-sensitive and safe.
  • Peers develop activities for education and prevention programs to attract more youth to the program.
YouthCare,
Project Prevention, Intervention, Education (PIE)
  • The program provides outreach, referrals, anonymous HIV testing, counseling, prevention, and holistic long-term prevention and intervention case management for HIV-positive youth and youth at high risk.
  • HIV testing targets street-involved, homeless, and sexual minority youth at several community clinics and drop-in centers.
  • A peer-run program provides emotional, social skills, and treatment support groups.
  • Youth gain experience in outreach, group facilitation, presentations, advocacy, community hearing testimony, and preparation of materials.
  • Focus groups guide development of group activities.
  • Street outreach staff are under 25 years of age.
  • Young people are integrally involved in the "steering" of program services.
  • Youth participate in interviews for staff hiring and offer input as part of the drop-in center client advisory group.
  • Program will fit needs and desires of the youth it serves.
  • Youth develop leadership skills and self-efficacy.
  • Inter-dependence among youth is created.
  • Gives project high visibility and legitimizes needs.
  • Diffusion of the focus on a case manager as the "only one who can help."
  • Case managers’ time can be more efficiently utilized.
  • Community contacts directly involve youth.
  • Youth are brought into care and prevention services.
Walden House, Inc., Young Adult Planetree (YAPT) Project
  • The project includes medical and psychological assessments, referrals, therapy and counseling, transportation, peer education, legal information, and case management for long-term options.
  • Residential care for HIV-positive or high-risk youth with substance abuse and psychiatric disorders is provided.
  • YAPT provides access to HIV testing, pre- and post-test counseling, HIV and STD education, HIV-positive speakers, and community-based outreach.
  • Two peer counselors work in collaboration with a non-peer coordinator and a non-peer project manager to provide services to youth affected by and infected with HIV.
  • The youth workers are primarily responsible for carrying out the clinical responsibilities under the supervision of the non-peer staff, but have plenty of autonomy (i.e. client treatment planning) and numerous opportunities for input regarding more strategic areas (e.g., program development).
  • Empowers young people by encouraging them to advocate for themselves and their community.
  • Provides positive role models for youth.
  • Enables youth workers to serve as liaisons between the young community and the larger service delivery system.
  • Ensures a voice for the youth community.
  • There is greater sensitivity to youth culture.

 

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Section 1: Practical Approaches to Youth Empowerment


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