What was the problem?
Retention and adherence models specifically for children and youth are needed to address the specific needs of these populations.
What is the solution?
Implemented since 2007, Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) currently supports Ariel Adherence Clubs (AACs) at 105 facilities across six regions in Tanzania. AACs were designed to address the social and behavioral barriers to HIV treatment retention and adherence faced by children and adolescents. All participants in AACs must know their HIV status; trained providers work with caregivers to facilitate disclosure of HIV status to children and adolescents. They are psychosocial support groups for HIV-positive children and adolescents aged 5–19. Clubs are grounded in the belief that children and adolescents living with HIV (ALHIV) will achieve improved health outcomes when clinical services are complemented with high-quality social support and age-appropriate information about HIV infection, treatment, adherence, HIV status disclosure, positive living, and life skills needed for growing and aging into healthy, HIV-positive adults. The purpose of AACs is for participants improve antiretroviral treatment (ART) adherence and clinic retention, access psychosocial supports to adjust to living with HIV, and transitioning to adulthood and adult HIV care.
Higher-volume sites are chosen to start AACs, where the number of children/adolescents in care is sufficient to justify the service model. AACs are facility-based and offer a package of psychosocial activities, which include individualized counseling sessions by trained service providers, dedicated and age-appropriate facility spaces, and monthly support-group meetings where trained providers facilitate discussions on drug adherence, the experiences of children and ALHIV, and self-stigma reduction.
What was the impact?
Programmatic data show that HIV viral suppression among patients 5–19 attending sites with Ariel Clubs is higher (60%) compared to those attending sites with no Ariel Clubs (49%), and this association becomes statistically significant for patients 5–19 attending health centers with Ariel Clubs (60%) compared to health centers without Ariel Clubs (35%, p<.02). Overall viral suppression rates are lower than expected. This is probably explained by the fact that clinicians may be prioritizing those with more advanced disease progression for HIV viral load (VL) testing at various facilities where VL testing has been recently introduced.
An evaluation of patients at selected Ariel Club sites showed that monthly visit attendance, as a proxy for ART adherence, was also significantly higher for those who attended AACs (91%) compared to those who did not attend AACs (82%, p<.0001). An important challenge, however, is that participation rates are lower than desired overall, with fewer than half of adolescents 10–19 attending AAC meetings. In addition, AAC attendance appears to be associated with being enrolled at a younger age. Participation is significantly higher among those who enrolled under the age of 15 years (37%), compared to those entering HIV care at 15–19 years (12%, p<.0001). This suggests that adolescents over 15 years who are diagnosed and linked to care have distinct psychosocial needs compared to those who were enrolled in care as children. For the latter group, the AAC service model requires further differentiation to better meet the needs of adolescents, particularly those entering HIV care at 15–19 years. Data show children diagnosed in later age need more active follow up, counseling, and HIV treatment education. Thus, AAC for ALHIV should pair up ALHIV with an experienced treatment buddy or adolescent peer educator to support their treatment outside of the clinic and club. This is intended to extend adherence at home, in the community, and during school.
AAC’s benefits for children and youth living with HIV include:
- Improved retention on ART, adherence, and viral suppression among participants;
- Increased capacity of service providers to effectively communicate with and provide quality HIV services to children and adolescents;
- Support and guidance for caregivers of children and ALHIV, particularly for disclosure and retention in care;
- Psychosocial support for children and ALHIV;
- Age-appropriate discussion and information-sharing on healthy living and nutrition;
- Gender and age-sensitive information and discussion on sexuality and sexual health, including reducing the risk of HIV transmission to sexual partners;
- Development of peer educators to improve HIV support among adolescents, preparing to transition to adult care;
- Provision of a safe, fun and socially-engaging space for children and ALHIV; and
- Medication dispensing to decongest facilities.
How does it work?
First, disclosure among children and youth requires involvement of the caregiver and AACs provide support and guidance for caregivers through the process and to help support their child’s treatment. This is done via health education sessions and individual counseling sessions. Additionally, the clubs meet in safe spaces to enable participants to engage with other children and ALHIV to discuss every-day information not necessarily related to HIV, have fun, play, and normalize their experience of living with the virus. The normalization of the experience of living with HIV in safe spaces is an evidence-based intervention that has proven successful with other populations living with HIV[i].
Adherence and psychosocial support provided is based on the National Guidelines on the Management of HIV and AIDS in Tanzania and the National Guideline for Health Care Workers on ALHIV. Multiple communication materials and job aids support club discussions; these are endorsed by the Ministry of Health, PEPFAR, and UNICEF. Also important is the fact that throughout club activities participants discuss internalized HIV stigma, so they can learn to address it in a constructive way and club members tend to become friends and support each other in routine activities outside of meetings. For older adolescents, some have initiated their own networks through mobile phones and accessible social media. More recently efforts have been made to increase the proportion of older adolescents in care. An adaptation to increase enrollment among 10-19 year olds included adding peer facilitation to AACs and having younger children meet separate from older adolescents at sites with adolescent-focused AACs.
In Tanzania, EGPAF supports districts to plan and implement HIV and health activities with support provided by PEFPAR. A district-level approach empowers and facilitates health leadership to take responsibility for priority activities, which often include AAC. When this happens, EGPAF provides technical support and assistance with training of key staff, monitoring systems, and then on-going supportive supervision to ensure high-quality implementation. In start-up and new sites, on-site coaching of health care workers and peers has been beneficial.
AAC Group Size and Scheduling
AAC work best when there is a group large enough to utilize the skills of a multi-sectoral team at a facility, including a clinician, counselors, pharmacist, peer educators, and reproductive health nurse. If the club is too small, then too much staff time is used on few patients. At the same time, too many patients can cause a long wait unless activities are planned to accommodate this. Generally sites with over 25 patients, organize sub groups to stagger appointments so that younger adolescents arrive earlier, then older adolescents, to reduce waiting times and increase time for client counseling and providing psychosocial support. That way, these sub-groups can wait together, and have discussions or education around care.
Integrating AACs into Communities & Systems
AACs promote the involvement of local leaders, civil society, and communities in HIV planning and implementation by responding to the needs of families affected by perinatal HIV infection. AACs were originally designed by working with parents and caregivers needing help to better support their children and have evolved to assist ALHIV to prepare for adult HIV care. AAC include ALHIV and past members as champions for the clubs.
In Tanzania, the national systems recognizes youth peer educators as a lay cadre of support staff at health facilities for peer-led HIV prevention education, as well as sexual and reproductive health information. EGPAF utilizes this structure, including the standardized training, to enhance AACs. AACs have recruited ALHIV to serve as facilitators during club meetings and integrate peer education. Additionally, peer educators, accompanied by health care workers, provide outreach health education to schools and sometimes help to track adolescents who missed their appointments in the community. Through informal group participation and dynamics, the AAC members are continually providing inputs and ideas as to what their groups should discuss or how they should be organized.
AACs in Tanzania have been strengthened to include clinical services, providing ART refills, clinical consult, and laboratory testing to all club participants on the same day as the monthly club meeting. Key design elements of AACs include integrated clinical service delivery (ART refill, labs, and clinical care) with psychosocial support and group/peer health education. Additionally, in order to address barriers to treatment success, such as recurring adherence problems, enhanced services through caregiver counseling are an important component.
AACs in Tanzania are connected to health facilities and integrated into systems to increase access to integrated services for younger groups with medication, reproductive health, and psychosocial support. This is a differentiated service delivery model that fits children and adolescents who are required to attend monthly clinic and ART refills per the national guidelines. In some cases, multi-disciplinary teams of facility staff (clinician, counselors, lab staff, pharmacist and a reproductive health nurse) work overtime on Saturdays to accommodate adolescent patients in school. This is planned at district level, reflecting patient volume and needs of patients in boarding or remote schools, who would otherwise miss school.
AACs in Tanzania are implemented in coordination with the Ministry of Health, Community Development, Gender, Elderly and Children. EGPAF has worked closely with the Ministry to develop the AAC training package, which improves the capacity of health service providers in psychosocial services for children and adolescents. Additionally, AAC components are aligned to Tanzanian national guidelines and standards for HIV care and treatment, which recommend making clubs available to children and ALHIV. With training, capacity of providers is built to recognize children and adolescents as clients in need of focused and age-appropriate care, build provider confidence to discuss HIV care and health directly with children and adolescents, and to work with caregivers to provide appropriate adherence and support to their children and adolescents.
Scaling up AACs
AACs are continually scaled-up to new sites meeting the children/adolescent patient volume criteria, particularly if EGPAF programs shift to new regions. EGPAF staff provides supportive supervision to AACs when possible, but AACs are primarily supported through sub-grants to districts and integrated into annual site and district work plans. This helps to promote sustainability and also to develop local ownership of AACs, which are seen as local structures. Health care workers with roles in adherence counseling, and clinical management of children/adolescents are designated focal persons for facilitating the AACs. In most cases, they have received training in pediatric psychosocial support. AAC activities are included within quarterly supportive supervision to sites. In addition, there is a bi-annual experience sharing meeting across AACs. Beyond in-person communication, EGPAF also utilizes WhatsApp group communication mechanisms for quick and easy communication.
Scaled up AACs have the potential to promote effective and efficient HIV programming at the national level by increasing access of integrated HIV services to children and adolescents in higher volume sites. Enhanced models for AACs can be designed based on the patient volume and needs. In Tanzania, clubs segment adolescent sub-populations such as older adolescents to accommodate their needs. In other countries, support groups are also targeted to pregnant and breastfeeding adolescents and young women, and even split by sex, so groups of young females or males can discuss openly. AACs also often work alongside facility-community linkage mechanisms to conduct home visits, link to social service and protection, and contribute to HIV and stigma-reduction outreach.
In scaling up Ariel Clubs, key considerations include:
- Working in collaboration with the Ministry of Health, Community Development, Gender, Elderly and Children and other appropriate Ministries to ensure alignment with national HIV guidelines in the development of training materials for service providers.
- Building sustainability through engaging local government authorities to ensure that Ariel Clubs are incorporated into annual budget and plans.
- Identifying health facilities that are most suitable to implement the Ariel Club model, such as those with enough HIV patients 5–19 years.
- Ensuring that health care providers selected to support Ariel Club activities are appropriately trained and sensitized to work with children and ALHIV, and receive appropriate oversight.
- Engaging peers, especially stable and successful adolescent clients, to conduct support group discussions and share their own experiences growing up with HIV in the local environment.
- Facilitating linkages from the Ariel Clubs to other social protection and community development opportunities, such as education and nutrition support, spiritual guidance, and to livelihood/income generation assistance.
AACs are currently being implemented by EGPAF in nine countries (Uganda, Kenya, Tanzania, Malawi, Mozambique, Swaziland, Lesotho, Ivory Coast, and Democratic Republic of Congo). AACs are contextualized for the specific country to ensure they address local challenges and realities of young patients in care. A success story from similar work conducted in Uganda can be found here.
Monitoring AAC Implementation & Attendance
A number of EGPAF tools are used to monitor key indicators of AAC on a monthly basis. While integrated, the national systems are not required to report on the joint package, so this is the role of the partner. In addition each quarter, the health management teams conduct a data review of the facility, which includes AAC. On-going quality improvement approaches are also applied to AAC. Standard operating procedures for facilities, monthly tracking of service provision, quarterly site-supportive supervision, and mentorship for health care workers have been used as management strategies for AACs.
Each AAC uses an attendance register. Caregiver or parent’s sign a commitment form to support children to attend the AACs once each month, and provide a phone number for follow-up. Club members sign in on each visit, marking new and repeat attendance. This tool is also used to track attendees who did not attend and assign friends from the club, peer educators, or community volunteers to conduct a home visit and encourage return to the clinic for medication. Attendance to meetings and receipt of various services is tracked to determine AAC membership and also the types of services received by each member. Output indicators collected include:
- Number of attendees by age, sex and date.
- Number of new attendees.
- Number of repeat attendees.
- Number of services provided to attendees by type (disclosure support, counseling, adherence, ART refill, reproductive health service, etc).
The implementation of Ariel Adherence Clubs includes two cost drivers: the training and orientation of club service providers and the support to monthly AAC meetings. The costs for orientation and refresher trainings for service providers include travel, accommodation, and per diem costs for participants, facilitators, and EGPAF staff. Additional costs may include venue and materials. Costs for hosting monthly AACs include meals and refreshments for participants, overtime allowances for health providers, venue costs (if applicable), materials for play and fun such as video or audio games, sports equipment and toys, and EGPAF staff travel costs. Main costs drivers are some one-off purchase such as play materials, and extra-duty/overtime allowances for clinical staff to provide services to clients on Saturday.
[i] Carrasco, M. A., Barrington, C., Kennedy, C., Perez, M., Donastorg, Y., & Kerrigan, D. (2017). 'We talk, we do not have shame': addressing stigma by reconstructing identity through enhancing social cohesion among female sex workers living with HIV in the Dominican Republic. Cult Health Sex, 19(5), 543-556. doi: 10.1080/13691058.2016.1242779\