Social support for children living with HIV is a key determinant of treatment success, Senegal study shows

A range of individual and collective factors contribute to HIV treatment success or failure among children and adolescents in Senegal, Dr Bernard Taverne at the University of Montpellier and colleagues report in Social Science & Medicine. Structural factors include the geographic accessibility of healthcare, universal health coverage and the availability of psychosocial support. Social factors include the child’s age, family relationships and social representations of HIV. These all influence treatment adherence, which in combination with biological factors such as nutrition and resistance, determines the effectiveness of antiretroviral treatment.

Whilst AIDS-related death rates have significantly reduced in recent decades, out of 800,000 children living with HIV in West and Central Africa, just a quarter have been tested and treated for HIV. There are higher rates of treatment failure among children in rural areas.

The researchers used a range of medical anthropology methods – interviews, observation, and case studies. During 2020 and 2021, the team gathered data during three-week stays in 15 health facilities. This included 11 health centres in rural areas and 4 regional hospitals in cities, in 11 of the 14 regions of Senegal.

The sites cared for 350 children. There was an average of 41 in the regional hospitals and 18 in the health centres. Only 65 children had an available viral load measurement: 29 girls and 36 boys, with an average age of 12. Most of the group had lost at least one biological parent (70%) and some had lost both biological parents (15%). Treatment was working for 27 of the children and the other 38 were experiencing treatment failure.

The team interviewed 37 children and adolescents (aged between 9-20), 63 parents or guardians, and 47 health workers. Most of the interviews were done using local languages. Interviews were also conducted in regional and national health services and with international and non-governmental organisations involved in paediatric care.

Interviews explored the history of HIV within the family, including their experiences of HIV, treatment and how care is organised. Researchers observed the functioning of health facilities and the interactions between health workers and families during consultations.

Results

All sites were impacted by ubiquitous structural factors:

• limited availability of paediatric antiretrovirals
• ‘treatment insecurity’ in the form of drug stockouts which lead to changes in regimens or require guardians to travel to other health facilities
• limited availability of viral load measurements which delay a diagnosis of treatment failure
• inefficient health coverage schemes which leave families with high costs
• geographical remoteness and transportation costs, which can lead some to give up treatment
• some healthcare providers’ knowledge gaps or challenges in applying knowledge
• reluctance to discuss sexual health with adolescents
• less peer support offered due to funding cuts

The researchers were not able to identify sites where better care meant higher rates of treatment success, due to missing viral load measurements. However, they believe they observed a configuration which created an environment for treatment success. This combination resulted in a “genuine everyday resilience” to allow clinic teams to adapt to the various constraints in the healthcare system. It particularly relies on team dynamics:

• A stable team of a peer-educator, social worker and nurse who patients are familiar with. This is important as many clinical staff balance multiple priorities (HIV, malaria, tuberculosis, sexual health, and vaccinations) and are frequently moved to new locations, which creates gaps in availability of physicians to carry out consultations and renew prescriptions. Instead, children may attend appointments for months led by nurses, social workers and at times, peer educators.
• The presence of peer-educators who are usually the people with the most longevity in a team. They bring local knowledge and often provide continuity of care to children.
• Good leadership and an efficient dynamic in the staff team.
• Free and accessible healthcare. Some facilities have been able to maintain free services, but in others only antiretrovirals and viral load tests are free.
• Community-based organisations who are able to organise their own activities, rather than being completely reliant on government funding.

It was clear that familial factors play a prominent role. Children who had been told about their HIV status and whose family supported them with their HIV care often experienced treatment success. The impact of being informed early and having time to learn to live with HIV and manage treatment meant they could be more responsible and have better adherence. They were also able to express their fears and manage problems with their caregivers. A committed parent or guardian could be an ally for treatment success. The researchers gave this case study as an example:

“When her mother died, Absa, age 3, was taken in by her grandmother… Since then, the maternal family lineage has united around her. One aunt living in Germany and uncles in Dakar send money for food and care. Her aunt Penda is her guardian and takes her to the hospital. Her grandmother makes sure she takes her medicines. At age 15, in agreement with the hospital social worker, who prepared Absa in advance, her aunts and her grandmother disclosed her status to her and reassured her. Absa is adherent, she is a young woman who is fulfilled and doing well in school with an undetectable viral load.”

On the other hand, in families where there was little support, children had to manage in isolation and were more likely to experience treatment failure. Also, a child’s experience of living with HIV could sometimes mirror the experience of the parent living with HIV. For example:

“Mamadou, age 4, was diagnosed at age 2. He lives with his parents, on his father’s side of the family. Maguette, his mother, has not accepted her own seropositivity and takes her medication irregularly. Mamadou’s last viral load indicated a treatment failure. Maguette admits that she often forgets to give him his medication, especially when she travels.”

Life is always changing, so the factors that can impact a child’s experience of living with HIV are also in flux. An example of this is adherence, which is a key factor for good treatment efficacy but can change often, depending on various factors. Adolescence is a time that can be characterised by the emergence of conflict with caregivers, while it is also a time when HIV is often named, which can lead to better adherence.

Conclusion

The researchers believe that the results bring to life the realities of individual situations and how they interact with structural and social factors, which can inform both theory and practice. Care teams can use the model to support children living with HIV with interventions that can create a favourable context for treatment success. Examples of this include putting measures in place to address structural factors, like providing transport, care, and food support to families. They can also be more understanding and supportive, by naming HIV as early as possible, supporting families to manage HIV well and providing psychosocial support. 

Challenges vary from site to site, so a nation-wide strategy cannot account for local features. But working on specific interventions with local sites and teams could help mitigate situations where there is a risk of treatment failure.