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

The insight and experiences of HIV-positive youth are often overlooked by adult providers and public health workers as viable resources in the development of HIV prevention and health promotion programs targeting young people. Despite the fact that half of all new HIV infections are among youth 25 years and under, young people have been significantly underrepresented in the decision making processes aimed at addressing this crisis. Health Initiatives for Youth (HIFY), a San Francisco non-profit agency committed to improving the quality of life for all young people, has responded to this concern through several prevention and youth empowerment programs designed and implemented entirely by HIV infected and affected youth. HIFY’s National Leaders Internship Program and Unity Jam Conference, both described in this section, aim to raise the voices of young advocates in the fight against HIV/AIDS. With the proper resources and planning, young people can be empowered to implement similar programs nationally.

The purpose of the National Leaders Internship Program is to facilitate the professional and personal growth of several HIV-positive young people from around the country in order for them to better address the needs of HIV infected and affected youth in their communities. The program is designed to enhance the skills, resources, and knowledge of ten interns so they can design and implement programs in the future that are geared toward improving the quality of life and well-being of HIV-positive youth and youth at highest risk for HIV infection in their communities. The following describes the processes used for the National Leaders Internship Program, which was held September 22 to October 3, 1997 in San Francisco, California.

The scope of our outreach strategy was narrow, targeting solely service providers working with HIV-positive youth in metropolitan areas who are affiliated with national youth-serving agencies and primary care providers. Outreach for program applicants was primarily targeted at the adolescent care projects funded under the Health Resources and Services Administration’s (HRSA) Special Projects of National Significance (SPNS) Program. An informational flyer was initially disseminated to project directors and other front-line staff working within HRSA/HAB's SPNS-funded agencies in early June, approximately three months before the deadline for applications. Additionally, a more detailed information packet, including a program abstract, application form and HIFY brochure, was mailed to HRSA/HAB's SPNS contacts with a cover letter asking them to forward these materials to prospective candidates and other service providers in their communities. Follow-up calls were then made to all service providers initially contacted.

Eleven of fifteen applicants were accepted to participate in the program – five were affiliated with HRSA/HAB's SPNS sites and the remaining six were affiliated with other national adolescent HIV service providers and advocacy groups, including the AIDS Policy Center on Children, Youth and Families, Children’s Hospital Philadelphia, and Cook County Hospital Adolescent Facility in Chicago, Illinois. Ten of the accepted applicants were able to participate in the program. The selection criteria were as follows (not listed in order of importance):

• Genuine interest in the program as expressed in their essays;

• Affiliation with national HRSA/HAB's SPNS;

• Apparent leadership qualities outlined in applicant profile and personal recommendations;

• HIV-positive and 25 years of age or younger.

Given these criteria, the following individuals were selected to participate:

• Intern # 1, age 17, African-American heterosexual female from Ft. Lauderdale, FL.

• Intern # 2, age 24, African-American gay male from Minneapolis, MN.

• Intern # 3, age 25, Latino gay male from San Diego, CA.

• Intern # 4, age 19, African-American bisexual female from Chicago, IL.

• Intern # 5, age 21, African-American gay male, from St. Paul, MN.

• Intern # 6, age 22, Latino gay male from Los Angeles, CA.

• Intern # 7, age 21, Filipina transsexual female from Los Angeles, CA.

• Intern # 8, age 22, Jamaican-American heterosexual female from Boston, MA.

• Intern # 9, age 23, African-American bisexual male from Philadelphia, PA.

• Intern # 10, age 21, Caucasian gay male from Providence, RI.

• Intern # 11, age 23, Latino gay male from Miami, FL.

The following training outline and overview of training activities describe the topics addressed in the comprehensive training and why we felt they were relevant.

Why is this program needed in the community? The Internship Program enhances the interns’ skills and resources in order for them to design programs in the future, specifically benefiting HIV-positive youth in their communities who have been significantly underrepresented in the development and implementation of social services aimed at this target group.

What are "Introduction Activities?" Introduction activities are exercises that trainers use to allow participants to share unique traits, interests, and background information with one another. These activities can make orientation for a new team fun and meaningful. Information gathered from introduction activities can help identify specific skills, needs or ideas people might have before and during the training, and is also helpful in establishing a strong dynamic between trainers and participants.

Why is "Public Speaking" important? Personal testimonies and stories often have a significant impact on audiences and have been proven to change behaviors, attitudes, and beliefs that people commonly have about HIV/AIDS. This segment of the training helps participants translate their personal stories into effective HIV prevention and educational messages. Participants then learn innovative strategies for delivering their stories to a wide variety of audiences, including youth, health care providers, and policy makers.

What is "Public Policy" and why is it important? Youth, health, and other social policies have a tremendous influence on our lives. The public policy segment of the training helps raise awareness among the participants about the relevant HIV/AIDS legislation that affects their lives and informs them of strategies they can take to affect responsible policy change in their communities.

What is "Media Advocacy" and why is it important? Media advocacy uses the media strategically to apply pressure for community changes to promote the public interest. It provides a framework for moving public health discussions about youth and HIV to policy makers and corporate executives whose decisions structure the way public health policies and personal decisions are made. In this segment of the training, participants learn practical strategies and tips about how to use the media as a tool to affect change in their communities.

What is an "Action Plan?" Action plans are strategic plans for carrying out a specific set of goals and objectives over a given amount of time. Action plans identify all necessary chronological action steps, resources, and community allies needed to fulfill an individual’s goals and objectives. A significant portion of the training is spent helping participants develop action plans to implement in their home communities.

What purpose does "Social Activities" serve? Some activities were scheduled for participants to socialize in a less formal setting several evenings during the two-week program. Social activities should be inclusive of all participants’ interests, rather than a subset of the participants. This stipulation often poses a challenge, particularly for diverse groups; therefore, all social activities should be optional.

• Looking at a different teaching model by focusing on broader learning skills and transformative learning moments as well as critical thinking skills might be methods employed to provide a way to deal with diversity in AIDS specific work experiences.

• The format of the training should be closely evaluated as well. One possibility would be to break up the training between the training component and the internship; an example is having two days of training, two days of internship, and then coming back to do more training, with reading expectations in between and homework.

• Training on the issues of homophobia would be very important to help the participants understand the history of this disease and to bring the group together on common ground.

• Utilizing young people who have already attended the training or are established leaders in their own communities as trainers might work very well; those youth could provide modeling and give a more diverse perspective as to what people are doing nationally.

There were five main functions involved in the planning and implementation of the National Leaders Internship Program: 1) Promotions and Outreach, 2) Logistics Coordination, 3) Curriculum Development and Training, 4) Intern Support and Social Activities, and 5) Evaluation and Documentation. Teams of two were required to fulfill the general responsibilities of each function outlined below.

1. Promotions and Outreach

• Design promotional materials including outreach flyer, program abstract and application form;

• Coordinate program outreach mailing list, disseminate information to mailing list contacts, and conduct follow-up phone calls;

• Review intern applications and select final candidates;

• Notify all applicants whether or not they were accepted and send letter of confirmation;

• Coordinate host agency mailing list, disseminate program informational pack to host agencies, and conduct site visits with agencies interested in hosting an intern;

• Select and confirm agencies to host an intern – be sure to have a Letter of Agreement between your agency and the host agency.

2. Logistics Coordination

• Coordinate all travel logistics for interns, including rides to and from the airport;

• Coordinate all housing arrangements for interns upon their arrival (be sure to confirm host families with a contract);

• Coordinate and distribute intern per diems (refer to budget section).

3. Curriculum Development and Training

• Define learning objectives for leadership development training;

• Develop training curriculum and agenda to fulfill desired learning objectives;

• Facilitate intensive leadership development training.

4. Intern Support and Social Activities

• Coordinate medical referrals, including case managers, nurse practitioners, and doctors who will be on call for the interns;

• Be on call for interns at all times via pager in the event of an emergency;

• Provide practical support to interns;

• Coordinate intern/host agency orientation luncheon, graduation party, and one fun group activity. All other social activities should be optional and require minimal planning.

5. Evaluation and Documentation

• Develop and implement comprehensive evaluation plan for program to measure outcomes and obtain feedback from the participants;

• Maintain a central filing system on all elements of the program;

• Write final report.

Evaluation is an integral piece of program design and implementation. To capture the program’s outcomes and ultimate successes in meeting learning objectives, proper tools need to be developed. The following learning objectives were used to guide the delivery and evaluation of the 1997 Leaders Internship Program:

1. Participants will learn what advocacy means and understand why it is important in their communities.

2. Participants will identify the major advocacy needs and issues in their communities specific to their health and well being.

3. Participants will understand what public policy is and the relevance that it has on their lives as young people living with HIV.

4. Participants will be aware of the key public policy issues which have a significant impact on their lives, HIV/AIDS surveillance issues (names reporting), needle exchange, inclusion of young people in clinical trials, Ryan White CARE Act legislation, etc

5. Participants will learn about the key political structures in which they can advocate, including the federal government, state and local government systems.

6. Participants will learn information and strategies around being their own best advocates within the political structures.

1. Participants will develop individual action plans (goals and objectives) around improving their quality of life and the lives of other HIV-positive youth to bring back to their communities.

2. Participants will improve their public speaking and communication skills and learn how to use them as effective advocacy tools.

1. Participants will learn useful information about HIV/AIDS and the human body, including information about clinical trials and other treatment options.

2. Participants will learn information about how to access HIV/AIDS models of care.

1. Participants will learn to identify and address stress and burn-out in their lives.

2. Participants will develop a valuable network of peers from across the country to help them carry out their action plans.

3. Participants will gain a greater appreciation of themselves as individuals and all that they stand for/represent.

Evaluation Methodology. Several agenda specific and open ended evaluation tools were created and completed by each intern. Additionally, a focus group was facilitated by outside evaluation professionals to capture the overall experiences of the interns.

• Program outreach must be targeted at HIV service providers who can provide ongoing support and resources to interns upon their return home in order to help them carry out their action plans.

• Follow-up calls with agencies targeted for outreach are a must – do not assume any provider will forward information to a client just because they receive the information in the mail.

• Selection criteria should be well thought out and specific – applicants should not be accepted solely based on one or two criteria alone. Some participants were clearly not ready to be involved in a training of this sort, yet were encouraged to attend by their agencies. A more thorough screening process with the participants would have helped to alleviate this problem.

• Clarify with the applicant what their goals are for the leadership training.

• Orient the participants to the diversity of people who will be attending and begin to have an open discussion with them regarding their comfort level in this kind of environment.

• Provide the applicant with some reading materials, such as basic information and information on the training, and follow up with each person after he/she has read the materials to determine if the training is a good fit for him/her and the project.

• Planning for the training, along with the screening process, should begin at least three months before the training is supposed to begin.

• Phone interviews with final applicants are absolutely necessary – you can never gauge the applicant’s qualifications and interest level based on their application alone.

• In selecting the interns, make sure that they all share common interests and objectives.

• All interns should be held to the same standard; therefore, they should all share a consistent skill set and degree of experience.

• Fostering a "productive" dynamic among a diverse group of interns is a challenge – try to ensure that the interns will be able to work with one another.

• Follow-up with intern references via phone to identify specific issues that may need to be taken into consideration, including medical needs and experience working in a team with other youth.

One major piece of orientation that did not happen and ended up overshadowing the entire training was the concept of youth living with HIV as a "community." As trainers, we came from a place of certain assumptions based on our work and experiences. One belief was that when we talked about "youth leaders" and leadership training, we meant all young people, regardless of sexual orientation, gender or race. Some of the young people who attended the training had never thought of the issues of homophobia, sexism and classism, and how these issues affect young people. Therefore, we strongly suggest that clarification be made about what youth attendees mean when they say they are "youth activists" and want to be leaders in their communities.

Also, there is a serious need to define individual and group expectations and to delineate between these expectations and the program’s guidelines. Interns must be informed that they will be sent home if they cannot comply with any of the clarified guidelines. As trainers, it would then be very important to follow through with this, especially if participants are disruptive.

• Both the planning stages and implementation of this program are very time intensive and require thoughtful work plans and prioritization. Two lead coordinators with a support team of two to three people can successfully plan and implement a similar program within a three-month timeline.

• It is important to delegate a responsible individual to develop and oversee the program budget. Airfare, travel per diems and other miscellaneous costs add up quickly, so resources must be used wisely. Overall limiting the program outreach to the local or statewide region can significantly reduce budget expenditures.

• Be sure to secure all of the necessary resources and planning time, including funding, key players, and a realistic timeline.

• Hosting a diverse group of youth and young adults from around the country for two weeks can be very tiring. Be sure to take care of yourself as a key player prior to and during the interns’ visit. Set aside time before and after each day of activities to check in with your support staff.

Health Initiatives for Youth (HIFY) has brought close to 2,000 young people together at three annual Unity Jams – day-long events that offer leadership development, information about HIV/AIDS through interactive workshops and theatrical performances, and rap sessions on HIV and other urgent health problems with adult policy makers. Unity Jam is entirely planned and implemented by young people for young people working in close partnership with adult mentors and community organizers. The following section, written by several peer event planners for Unity Jam ’97, highlights key steps involved in the Unity Jam planning process and includes useful lessons learned and recommendations for people interested in planning a similar peer-led event in their communities.

The first step is to identify whom you are trying to reach and what you want to accomplish with this group of people. This process includes researching what similar events have been planned in the past by other organizations so your event will be unique. Make sure that you have realistic goals and that they reflect the needs of the populations you are trying to reach. Begin by developing a list of outcome objectives that outlines what participants will learn. The objectives can be broad, but make sure that they are measurable. This is important because when you look back at the event you will want to figure out if you actually reached your target population and accomplished what you set out to do.

We enlisted the help of staff to identify a set of realistic goals to drive our planning process. Our outcome objectives were for youth participants to:

• Have fun;

• Gain a greater sense of self;

• Develop a sense of community;

• Gain access to policy makers;

• Establish an understanding of how HIV/AIDS affects other youth;

• Learn about Bay Area youth serving organizations.

Enlist the help of other agencies in your community. They can help with the planning, bring participants, provide information at the event, organize volunteers, and even share resources. This is a great way to get to know other youth service providers in your community and to create a network that is both useful to your organization and to the youth being served.

We had monthly planning meetings and invited providers and volunteers from other youth organizations to come and provide input and support. A lot of very creative ideas came out of these meetings. We also had our community partners sign off on our outcome objectives.

Figure out how much money you can realistically spend on your event. If what you need to spend is a lot more than you actually have, try to find other resources very early on in the planning process. This means everything from soliciting donations to coordinating a raffle at the event with donated prizes. Organizations have things to give in addition to money, so be creative.

Always keep your budget in check. You don’t want to run out of money at the last minute. Having some money set aside in a miscellaneous fund is a very good idea. We ended up spending money on things we didn’t plan for; they just seemed to come up.

The budget is one of the most important parts to planning a conference. Before you start making any major decisions about size and space, make sure that you have a clear understanding of your funding availability.

Keep the following costs in mind:

• Space. This can be your biggest expense, so start working on it early! There are ways to get conference rooms in hotels for lower rates or to receive donations from large corporations. Hotels are sometimes difficult because they have weird, unexpected expenses, so make sure you get information on everything. Many hotels are also union operated and do not allow food to be brought in from outside caterers. Thus, providing lunch on site can become expensive quickly.

• Refreshments. Breaks are important if you want to keep both participants and staff attentive. Again, if you are in a hotel, they expect you to use their food services. Plan for snacks, juice, soda and coffee – we didn’t and it turned out to be a major flaw on our part.

• Lunch. Our budget did not hold enough resources to buy a hotel lunch for seven hundred people, so we had lunch provided around the corner at a nearby church. The food was donated and served by another youth group.

• Materials and Supplies. These expenses include folders, workbooks, pencils, name tags, markers, TV/VCR rentals, flip-chart stands, etc.

• Printing. Our big printing cost was the program we handed out to each participant. Other printing costs that might come up are brochures, registration forms, banners and posters, confirmation notices, agendas, and evaluation forms.

• Postage. Postal cost seems like a small detail but it can add up quickly, especially if you are doing most of your registration by mail.

• Sound. The sound equipment that is available at most hotels is minimal and might not be what you need. We hired a sound person to come in and bring a lot of his own equipment. He was able to make everything work; we had wireless microphones and upbeat, trendy music during intermissions.

• Décor. Expenses can include helium tank rental, a sign for the stage, floral decorations, balloons and other miscellaneous supplies.

• Gift Certificates. We gave these out to those who received local hero awards and as prizes in our game show. In an ideal world we would have been able to get them donated.

• Entertainment. We had a number of performers at our conference, both during the day and at our after party. We had a lot of them donate their time or ask for a fifty-dollar honorarium.

• T-shirts and other Goodies. It is definitely important to give participants something to remember your conference. We had T-shirts and donated records and tapes for conference participants.

• Security. This is important. If the site does not provide it, the responsibility of promoting a safe space for staff and participants falls on you.

• Miscellaneous. There will always be expenses that you have no idea will exist. We left a lot of our allocated budget for miscellaneous expenses and spent every penny of it. Some of these expenses included flowers for speakers, parking, and food for volunteers.

Decide where you are going to have your conference and make sure that you can afford it. Sometimes conference spaces and hotels will donate the space or at least give you a break. Try many options and make sure that they quote all of the expenses you may incur, including insurance fees, clean up and other labor costs, sound equipment, lighting, and food and beverages. Also ask yourself, What type of space you will need to facilitate all of your planned activities, including group activities, workshops, agency booths and information sharing, and on-site lunch? Will everyone fit comfortably? Are there enough breakout rooms for workshops and other special activities?

• Start looking for a site to have your event anywhere from six months to a year before you have it. Conference spaces are expensive, so give yourself a lot of time to find one that suits your needs and is affordable.

• Don’t be afraid to ask for a discount on the rental cost of the space – keen negotiation skills and a friendly letter could save you a bundle of money.

• Conduct several site visits before the event to give yourself a good idea of how you will use the space.

• Be sure to file all information on the spaces that you research in a binder for future events to avoid doing all of it over again.

• Make sure your space is easily accessible by public transportation and has parking space for participants who drive.

Planning Questionnaire. We sent out a planning questionnaire to everyone on staff at our organization to enlist input into the agenda. This gave everyone the opportunity to put their ideas on the table, however crazy or workable they actually were. This is a great way to come up with interesting strategies to keep the participants, as well as staff, interested and involved in the event.

The Calendar. The key players on staff were each given a part of the planning process to take the lead on. The group identified a list of the key planning tasks that needed to be taken care of. These tasks were then categorized into a more specific set of committees (enough for each planning team member to chair one). Each person was responsible for making a timeline for his or her specific committee tasks, soliciting help when needed from the rest of the group, and bringing a weekly update to planning meetings. Since some people were responsible for more than one piece, support and group help was definitely a vital element.

We established weekly conference meetings to review the budget, review timelines, and talk through ideas. The process was a positive one because everyone was kept updated on progress and areas that needed work.

Community Collaboration. The original intent of Unity Jam as a collaborative effort was a wonderful one. It gave youth and HIV/AIDS organizations all over the Bay Area an opportunity to work together. It also was a way to get our name out in the community and continue to build a positive reputation. Figuring out how to "collaborate" was much more difficult than any of us had anticipated. The most important thing was to have a clear understanding of the outcome of each meeting and to set specific goals for the other organizations involved, clearly delineating tasks. It was also important to target specific organizations that were in some way related to the populations that we intended to serve.

Meetings. Prior to Unity Jam, we convened several meetings and faxed out invitations to over 70 agencies. About 25 diverse organizations came to our meetings and participated in a variety of ways. It is important to note that some groups wanted to do a lot, while many just wanted to attach their names to the event. Both forms of support are important; therefore, we asked all collaborators to formally endorse our list of outcome objectives.

The best part about the collaboration meetings were the very unique and creative ideas that were presented. The idea of establishing a Local Heroes Award, for example, was one of the best parts of Unity Jam and was brought up in one of these meetings. Interesting workshop ideas were also brainstormed and then incorporated into our agenda.

• Clearly define meeting outcomes and agenda before each meeting.

• Give collaborators specific tasks so they come back to future meetings and have increased interest in doing more work.

• Start the meetings on time and stay focused.

• Other organizations in the community can be a great resource, figure out what you need and ask for it.

Political Support. Getting official sponsorship from regional city and county mayors’ offices makes other key players – including the media, local youth serving agencies and community leaders – want to get involved as well. We got seven mayors’ offices in the Bay Area to write us proclamations, which are fancy letters saying that an entire city or county officially endorses your event. All we did was send various mayors’ offices letters, including a sample proclamation, and followed up with phone calls. Requesting proclamations for a special event was also a great way to raise the awareness of political leaders and decision-makers about the issues you intend to address at your event.

The Agenda and Activities. Once we had established what we wanted to accomplish and how to pay for it, we began the process of looking at how the day would unfold. We spent a great deal of time trying to make the day directly relate to the outcome objectives and to flow smoothly for all of those involved. The agenda changed with almost every staff or planning meeting. Nothing was ever set in stone since it was important to be ready for changes that may have arisen.

How long do you want your event to be? This decision should be based on (a) the goals of the conference, (b) available funding, and (c) the number of youth invited.

We decided to make our conference a daylong event. What we did not take into account was that, since we invited a lot of schools, many of the participants had to leave at the end of the school day, 2:30 PM. However, the young people who were able to stay remained engaged and enthusiastic.

The Workshops. We used workshops as a main way to educate the young people who attended Unity Jam about HIV/AIDS. We enlisted the help of everyone possible in order to come up with stimulating and relevant topics for these workshops. This process included all staff at our agency, youth in the community, and service providers who came to our collaboration meetings. Once we had a list of topics to cover, we began the difficult and often discouraging task of finding the people to facilitate the workshops. We sent out a call to the community requesting that certain individuals and organizations facilitate one of the many workshops depending on their interest and experience. Fortunately, we were graced with many wonderful people who were willing to help.

We sent out a lesson plan to all facilitators, asking for the basic focus of the workshop, an outline of time use, and what tools they needed us to provide. Getting the presenters to send back the lesson plan was a little difficult and required numerous follow-up calls and polite nudging. While the process of requiring facilitators to complete a lesson plan was time consuming, it helped us ensure that the workshops would be informative, interactive, and fun for the young participants who attended Unity Jam 1997.

On the day of the conference we had a volunteer assigned to each presenter. They were available to get the young people to participate in the workshop, run copies, and hand out evaluation forms at the end. This was a very useful tool for the presenters because they were able to stay focused on facilitating their workshop rather than worrying about handouts and evaluation forms.

• Make sure the workshops are educational and youth friendly.

• Be flexible; never assume that something cannot be changed.

• Have a volunteer to help each facilitator during their workshop.

Youth Theater. While workshops are certainly a great way to accomplish desired outcomes, they aren’t always for everyone. As an alternative to attending one or both sessions of Unity Jam 1997 workshops, we invited two youth theater troops to perform their plays. Having a play during workshops was a good idea for a number of reasons. Many of the participants weren’t sure what workshop, if any, they wanted to attend and for those who did not want to break off into smaller groups, the play provided an opportunity to stay engaged in relevant topics. Participants hanging out around the front of the conference were talked into watching the play and, in turn, brought back into the focus of the day.

HIV/AIDS Information Game Show. Our HIV/AIDS information game show was a creative approach to educating a large group of over 700 youth about HIV transmission, treatment, and risk reduction. This activity forced youth participants to think critically about the impact HIV/AIDS has had on their communities and motivated them to ask questions about traditional methods of prevention education that have neglected to address such questions. This was definitely one of the most thought provoking events of the day. It was entertaining and provided a great opportunity for youth to actively participate and win prizes. Having everyone in the same room and interested in what was going on certainly made all of us feel that we had done a good thing. Participants were surprisingly well educated and informed; therefore, the next time we might want to make the questions more challenging. This will depend on the knowledge base of the participants, which was difficult to gauge for 700 youth.

• This was a great way to break the ice at the beginning of an intense day.

• Keeping the youth excited and their energy levels high while giving them important information was obviously a great combination.

• Prize incentives helped engage the participants.

• Using fun, interactive styles of education works well, especially for large groups.

"Talk Show of the 90’s" Our talk show featured five dynamic young people who shared their personal experiences living with and being affected by HIV/AIDS in the 90’s. Real life, personal stories are an extremely effective way of communicating and educating. The panelists were amazing, and did a wonderful job supporting the talk show host, who was a young woman living with HIV who has been featured on MTV’s documentary, Sex in the 90’s, and in Vanity Fair Magazine.

• The talk show was a very useful educational tool and, according to youth participants, was one of the most valuable activities of the day.

• Make sure that the panel targets the group at the conference on many levels related to HIV, including its impact on family members, friends, lovers, and young people.

Section 6: Summary and Conclusions: Program Lessons Learned

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