Project ARK Peer Treatment Adherence Program in Second Year and Growing
History
St. Louis-based Project ARK (AIDS/HIV Resources and Knowledge), a Ryan White Part D grantee, was founded in 1995 by a pediatric physician, nurse and social worker who provided care to babies and children living with HIV/AIDS. The goal of this AIDS service organization was to provide a supportive community responding to the unique needs of these tiny patients and their families. With the advent of ART (antiretroviral therapy), the number of babies born with HIV has plummeted, but as the Project’s infant clients have grown, Project ARK’s mission has expanded to include children, then youth, and now young adults affected or infected with HIV/AIDS and their families. A collaboration among the Washington University School of Medicine, St. Louis Children’s Hospital, St. Louis University School of Medicine and other area health care providers, Project ARK now coordinates medical care, social support, and prevention services to enhance the lives of children, youth, young adults, women and families living with or at risk for HIV infection in the greater St. Louis area.
Program model: In clinics and physicians offices
 (From left) Project ARK staff Kelly Nolan, Linda Smith Jones and Stacey Slovacek take a break during Camp Hope, a summer camp program for children infected and affected by HIV and their families. |
In 2007, Project ARK received Ryan White Part A funding to develop a peer program to help people living with HIV/AIDS adhere to treatment and link to care. Under this program, HIV-positive treatment adherence peer counselors work one on one with newly diagnosed clients, clients struggling with adherence, and clients lost to care to achieve optimum health outcomes by helping them access medical and support services and reducing barriers to care and adherence. Project ARK also uses Ryan White Part D funding to support the program including funding to support the supervision of the treatment adherence peer counselors.
The treatment adherence program enables Project ARK to expand its reach to provide a crucial service to youth (18 -24) and adults living with HIV throughout the greater St. Louis community. “No one else can really understand what a client is going through other than those who have gone through it themselves,” explains Stacey Slovacek, Family Life Specialist, CCLS, who heads up the program. “When I was interviewing peers, the one thing that every single person told me was ‘I wish this program had been around when I was newly diagnosed.’ It’s critical to providing services to clients.”
Project ARK has placed three peer counselors in HIV primary care clinics at Washington University and St. Louis University. These peers are part- or full-time employees of Washington University, serving as treatment adherence counselors between 8 – 20 hours per week. Through collaboration with another area AIDS Service Organization, the St. Louis Effort for AIDS, Project ARK has subcontracted a fourth peer counselor to work 8 hours per week serving clients in two private physician’s offices in St. Louis. This peer counselor is an employee of the St. Louis Effort for AIDS and works closely with Ryan White case managers co-located in the physician’s office. Project ARK hopes to build on the St. Louis Effort for AIDS relationship with area physicians to place peer counselors in more offices as the program grows.
Peer roles and responsibilities
Working as part of a multidisciplinary team with case managers, medical care providers, and other specialists, the peer counselors meet with clients to offer support and encouragement. They listen to clients’ concerns and share similar experiences. Through their own example, they offer positive role models for adhering to treatment and can offer practical strategies for incorporating medications and diet changes into a client’s daily routines. They work with the client to draw up a care plan and help them develop strategies to follow it. Depending on a client’s needs, the peer counselor may help to remove barriers to keeping medical appointments by coordinating transportation or onsite child care; make referrals to mental health, case management or substance abuse treatment services; or accompany clients to medical appointments. In some cases, clients may be concerned not only with their own adherence but that of their HIV-positive children as well, and the peer may help to develop strategies parents can use to help both themselves and their children adhere to treatment. Peers generally have a caseload of about 20 – 25 clients per year; so far this year, they have received about 80 referrals. Peers also attend weekly team staff meetings and participate in consumer advisory boards.
Because of the demanding nature of the role, peers generally serve as treatment adherence counselors no more than 20 hours per week. Two of the peers split their time equally between the treatment adherence project and Project ARK’s Family Advisor Program, which provides programs to support children, youth, women and families living with HIV. Since the Project’s inception, peers have served as family advisors, offering support through programs such as school supply collection and distribution, an annual toy drive, organization of an annual women’s retreat, the creation of a summer camp for children and their families, and many other activities. Annually the Family Advisor Program serves over 1000 clients affected or infected with HIV.
Program start-up
No one else can really understand what a client is going through other than those who have gone through it themselves.
Organizational buy-in was not an issue at Project ARK, according to Stacey—the project leadership recognized the need for and benefits of the program. Nevertheless, education and marketing were critical. “People may have been supportive,” Stacey explains, “but going from getting that buy-in to getting referrals is another story.” Stacey credits the People to People team for their capacity-building support which helped to get the project off the ground. Not only did they provide support during the planning process, they conducted staff trainings about the benefits of peers and how best to utilize them to physicians, case managers, nurses, and other employees at the clinics where peers were being placed.
The biggest challenge in launching the program was identifying the peers who would be the right fit for the clinics, who had a passion for the work, who would be able to share relevant experiences with clients and who weren’t encountering issues that might interfere with their self-care or prevent them from being effective peers. Because they are modeling adherence, candidates were required to be adherent to their treatment regimen and conscientious in their own self-care. [Stacey presented her observations on recruitment challenges at Project ARK in a HRSA-sponsored Webcast entitled “Recruiting, Hiring, and Supporting Peers"]
Networking with other organizations was key in Project ARK’s recruitment efforts. “We sent fliers to our planning council, email to community organizations, doctors’ offices, case managers—all the different team players involved,” recalls Stacey. “We even had a few referrals come in through private physician offices that weren’t in the peer program yet. The more word of mouth we created, the more phone calls we got. Our peers weren’t recruited from one place, and that brings a greater range of experience to the team.”
Training, continuing education, and peer networking
Training was a requirement of the recruitment process as well. Prospective peers were expected to go through both Level 1 and Level 2 training provided by the People to People project. This training was helpful not only in providing the peers with the skills they needed to function in their new role, but to help them determine if peer work was something they wanted to take on. Of the seven potential peers who went through this initial training, three now work as treatment adherence counselors at Project ARK.
Following this training, Project ARK worked with People to People to develop a two-day intensive workshop, which walked peers through all aspects of working with clients from the initial phone call when a referral comes in to transitioning a client out of the program when he or she has met the goal. This training included extensive role playing to help peers practice the skills they had acquired. Finally, the peers participated in a week-long orientation to the setting in which they would be working.
Peers are required to participate in eight continuing education hours per year, a goal which they have all achieved already this year, according to Stacey. Project ARK invites peers from all area programs to monthly meetings, providing them with a chance to talk about their work with others who share their experiences, compare notes, and discuss specific challenges and successes. One component of this meeting is an hour-long continuing education training on a topic which the peers themselves suggest.
Some Project ARK peers have also participated in the Voices conference in Washington DC and in outside trainings on topics such as integration into the multidisciplinary team. During the summer of 2009 the peers from Project ARK visited the Kansas City Free Health Clinic to participate in a People-to-People sponsored “peer shadowing” which provided them with an opportunity to meet and observe peers working in a different setting, attend a multidisciplinary team meeting, and participate in a peer-led support group. The response to these networking opportunities has been so positive that People to People is organizing a retreat for peers in the region in October which will include a training component to address various aspects of peer work.
Supervision
To document their work, the peers fill out weekly sheets [included in the sample forms for documenting peer work, a resource in the capacity building toolkit Building Blocks to Peer Program Success] enumerating their interactions with clients, highlights and challenges, and any particular issues the peer wants to address. This sheet becomes the basis for a one-on-one weekly meeting between supervisor and peer. Having peers who work in so many different locations makes supervision more challenging, according to Stacey, who acts as supervisor for the treatment adherence counselors. “Relationship building is really important, because as a supervisor you have to have a good understanding of the setting the peer is working in,” said Stacey. “I spend a lot of time team building among the other team members to bridge that gap. For example, in one clinic, I noticed we were not getting a lot of referrals. When we met with clinic staff to talk about different strategies, we found that as clinic staff were promoting the program, more females clients were interested, but they wanted to work with a female, and the peer placed there was male. We were able to place one of the female peers into that clinic instead, and we’ve seen a steep increase in referrals from that clinic.”
Evaluation
Now that the program is established, peers have been hired, and referrals are coming in regularly, Project ARK is beginning to focus attention on evaluation. The program has identified kept appointments, CD4 counts, and viral loads as measures to track. The peer counselors monitor clients’ kept medical appointments and test results and document their work in the medical chart for each client. “Our peers are recording everything in the charts manually right now,” said Stacey. “We are working on training them to enter their data into a program called Factors, a database that our case managers use. By having these notes in one place, we’ll have more opportunity to track measurable outcomes so that our quality management team can run reports to determine how adherent clients are after they’ve signed on with a treatment adherence counselor.”
Success
In reviewing the past two years, Stacey takes pride in how far the program has come. “We have excellent peers who have really gone above and beyond, we’re starting to branch into private physicians’ offices, and we’ve received over 80 referrals this year alone,” she notes.
But the real success comes in the difference the program is making in the lives of clients. “We had one woman who tested positive several years ago who was very resistant to coming to clinic,” Stacey recalls. “It was common for her to have panic attacks, and she said she would never be back, would never take medication, and basically just stayed away. At home, she would not eat off glass plates—she converted everything to paper because she did not want to spread HIV to her children. The clinic team worked hard with her to provide some education, but it just would not resonate with her. We linked her with a peer, and that relationship has really blossomed and grown. This woman has been working with her peer very vigilantly, coming to clinic, and taking her medications. To me, that is an amazing success.”
