This report describes in detail our comprehensive program for providing HIV care and HAART to children in a challenging, resource-limited setting. Attention to the principles of good adherence led us to individualize care for both child/teenage patients and their caregivers, actively address psychosocial needs and build capacity of children and teenagers to engage in their own treatment. We believe that this program helped to realize good treatment outcomes and that our experience would benefit other programs in similar circumstances.
Our description illustrates how it was possible to implement a child-centred approach with full consideration of the child/teenager as the patient-individual. In addition, attention to the child's family was a key component in the program. This approach is important because HIV is a long term condition and HAART is a life long therapy which needs to be strictly followed. From a public health point of view maintaining adherence is the only way of preventing drug resistance. It is also important because children face different types of stress compared to adults. Our program tried to deal with this issue with its flexible approach and adapted tools. Revisiting the principles of adherence, we believe that this program addressed most of them in a realistic manner. Patient-related factors of knowledge, attitudes, beliefs and fears were approached in several ways, from education, to play groups to individual counselling. Basic socioeconomic conditions were cared for by social workers. Difficulties in taking medications were managed by practical tools for pill monitoring and education around their importance. Finally, the relationships between caregivers and patients/family were strengthened in many ways from use of peer counsellors to fun days. We believe our good medical outcomes are due to attention to these key issues.
We have not formally evaluated individual components of the program. It would be difficult to assess which interventions were the most useful for the children or caregivers, as most children participate in several activities concurrently, and the 'package' of interventions is tailored for each individual. We acknowledge that a formal qualitative evaluation of individual interventions would be very useful. There is however, continual communication between patients, caregivers and staff that is fed back to program coordinators, which in turn informs adaptation of the interventions and program. For instance Counsellors reported that in informal group discussions with children, it appeared as though no specific aspects of the program stood out as the best activity, as they considered each aspect to be part of a whole. The children appreciated their own clinic space and the many activities that helped them work out their feelings or just have fun and forget their illness. Similarly, discussions among caregivers in the group sessions revealed problems as the program developed and these were addressed. For example, transport costs were a barrier to attending, and these were paid for once this problem was raised. This informal iterative loop, along with regular patient and program monitoring activities, have been used to informally evaluate aspects of the program.
There were a number of challenges in implementing our program that need to be discussed. The dependence of the child on their caregivers meant that the child's adherence was directly related to the willingness and ability of the caregiver to attend. If the caregiver was not convinced about the need for regular attendance or was unable to accompany the child due to work or illness, adherence suffered. If there were several caregivers, it could be difficult to communicate correctly on the treatment plan. Hence, we made strong efforts to engage the caregivers as key members of the treatment team.
The socio-economic situation of the family was also a challenge, given that transport fees were double every time the child had an appointment (child and caregiver). We addressed this by providing financial assistance for transport on case-by-case basis after social assessment.
Another problem was that pediatric HIV care was still not a priority in the HIV care program; the focus was mainly on adults especially for the adherence counselling support package. It was a challenge to introduce a child-centred approach with inclusion of the caregiver and whenever possible the entire family for care and offer psychosocial support. Eventually, our efforts were recognized, but this problem may be present in other contexts and needs to be anticipated.
Practical concerns included that the size of pillboxes was inconvenient for some regimens (DDI or syrup), and the price of pillboxes was too high. This required additional funding by MSF, and may be an issue of sustainability in government funded programs.
Children were easily bored if the same material was used over and over so that a constant review of the program's operating plans and methods was required to avoid disinterest. As well, fun activities had to take place during school leave or on weekends, creating some scheduling difficulties. For multiple days training, caregivers had to ask permission for leave from work, which was not always granted.
At the structure level, there was limited physical capacity of the clinics to cater for child-specific activities and rooms. Rapid turn over of trained medical staff was a major challenge. It was why we trained more young people living with HIV in counselling and ToT, to shift the tasks from medical staff to volunteers who would be likely to remain long term with the program.
To continue to develop the program, we plan to adapt and diversify the range of materials, games, and posters. As well, we hope to make an agreement with a local radio station to have regular show with and for children/teenagers.
In order to ensure continuity and harmonisation of the program activities, we propose having teams of two persons (health promotion and counsellor) "specialised" in pediatric counselling activities, to be responsible for the development or adaptation of strategies and material.
Several other practical suggestions include: having a free telephone line for patient or caregivers to ask their questions or share their concerns; train more young people living with HIV to be counsellors to lead support groups for children and teenagers in their community; target teachers for treatment literacy to reduce stigma and discrimination in the school environment; and develop alternatives to pill boxes, (for example, pill bags made of plastic covered with a local printed fabric).
To scale up the treatment literacy for children/teenagers and caregivers, opening a training center was proposed. The training curriculum would be divided into modules that would take place once a week so the participants could complete the curriculum at their own rhythm according to their availability.
A formal evaluation of the psychosocial support activities for children, teenagers and caregivers is warranted, to try and determine which interventions are most effective in supporting patients to adhere to care and treatment. A patient and program monitoring system is in place and a data management team ensures that a wide range of data is available at routine intervals to assist with program evaluation. At every clinic attendance for each patient, demographic, social, clinical, biological, immunological and laboratory data are recorded and entered into a database, and data are cleaned, analysed and reported on monthly, quarterly, annually and as required. Data are also collected on social work, counselling activities, patient tracing episodes activities, pill count, self report adherence, and other activities. Analysis of these data will be done in further operational research activity and will be submit for publication.
Finally, the issue of sustainability is always present in projects like this. The MoH needs to be convinced that HIV care and treatment for children is a priority. Most of the interventions described here are not expensive, based mostly on careful organization of care and use of volunteers to extend the reach and capacity of the program. We believe that demonstrating good results with low cost to a MoH should be convincing.