Mmata Tswana (My Partner) - Community Caregiver Support Groups to Improve ART Adherence Amongst Adolescents Living with HIV

“As experts in their own situations and children’s closest supporters, caregivers are crucial to providing psychosocial, adherence and retention support to the children and adolescents that they care for. They are well placed to provide overall health support, including with adherence, disclosing to them in an age-appropriate way, addressing stigma and supporting sexual and reproductive health.”

This promising practice brief describes the Mmata Tswana model being implemented in Scottish Livingstone Hospital in Molepolole, Botswana, which involves community caregiver support groups to improve antiretroviral therapy (ART) adherence and retention amongst adolescents living with HIV (ALHIV). 

As explained in the brief, “HIV-related deaths have decreased in all other population groups since 2000, while tripling among adolescents in the same period. AIDS is now the leading cause of death in adolescents in Africa, and the second cause of death among adolescents globally. It is becoming increasingly apparent that adolescents are underserved by existing HIV services, with significantly worse access to ART than adults, with lower rates of adherence, virological suppression and immunological recovery.”

Mmata Tswana is based on the premise that when caregivers of these adolescents are given support, both psychosocial and practical, they are better equipped to assist and encourage adherence to treatment in adolescents, and to ensure that they are accompanied to scheduled clinic appointments. The model functions by giving caregivers an opportunity to:

• Meet, discuss and learn from one another about ART adherence and caring for ALHIV;
• Provide psychosocial to one another;
• Offer general care-giving support to one another by, for example accompanying each other’s children for scheduled appointments, as well as assist them with treatment as necessary; and
• Create a community of knowledge about adolescents’ treatment and health needs to minimise the risks associated with loss to follow-up when a caregiver is unable to take care of an adolescent. For example, if a caregiver becomes ill, other caregivers in the group can step in to provide support based on their knowledge of the child’s health needs.

The brief describes how these groups are set up (recruitment, membership)  and how they function. For example, the  project aims to bring caregivers of ALHIV with varying levels of adherence together in order to provide opportunities for information sharing, motivation and support amongst caregivers. The groups are usually small (between 4-5 caregivers) in order to create an environment in which caregivers feel open and comfortable, and also so that members do not feel overburdened by for example, accompanying multiple children to the clinic. Members of the group attend an orientation meeting to bring together all adolescent-caregiver pairs enrolled in the project.  In addition, the group is supported by an HIV-positive community health worker (CHW), who conducts monthly visits to each community support group to provide technical support and ensure a linkage to the clinic. The CHW facilitates a discussion about what the support group has been doing, what support they have been providing to each other (e.g. psychosocial, clinic attendance, child care), what has worked and what has not, and what additional support they need.

As explained in the brief, the Mmata Tswana model is in early phases of implementation. As such, results, successes, challenges and lessons learnt are not yet available in full. However, a preliminary review of implementation to date reveals promising results. These include:

• Significantly more adolescents were accompanied by caregivers to scheduled appointments; only one adolescent was reported as showing up at the clinic unattended.
• Significantly increased adolescent adherence to laboratory appointments.
• Improved ART adherence amongst ALHIV. Of the 8 ALHIV with unsuppressed viral loads originally enrolled in the project, 5 are now fully suppressed.

Some of the challenges include: inability of caregivers to travel to attend the support groups due to lack of funds; some caregivers have lost interest and have not attended meetings after the initial home visit; factors impeding ART adherence and clinic attendance such as food insecurity, illness and psychosocial needs; and challenges on the side of the health care system related to staffing and supplies, which affect, for example, the ability of ALHIV to be tested regularly to measure viral load and CD4 count.

In conclusion, despite having the potential for immensely positive impacts on caregiver and adolescent well-being, the report notes that psychosocial models, such as Mmata Tswana also require significant time investments and consistent coordination and support. Further monitoring is required to determine its efficacy.