In Africa, pediatric care units and community initiatives have sought in recent years to fill the gap in care of HIV-infected and affected children by improving diagnosis and early initiation of ARV therapy. This progress has enabled a greater number of children to grow up with HIV. However, the needs of these children are not exclusively medical because HIV disrupts their lives as well as their families’ and communities’ lives. Social and psychological support is critical. Growing Up’s partners working in community-based organizations have been thinking hard about how to provide appropriate psychological support to children and their parents and experience this situation as a difficult challenge.
 
In response the GROWING UP program organized in October 6-10, 2009 a seminar on « psychological support and counseling for HIV- affected or infected children» specifically for professional actors working in its partner organizations in Central and West Africa.

After an introduction about the basics of child development and how children are represented in society the seminar addressed more in depth the helping relationship that links professionals, children and parents together in a triangular dynamic providing psychological support to children and resolving problems that families confront. Seminar teachers also introduced resources, techniques and materials useful to this helping relationship. There was a session on conducting individual counseling sessions and facilitating support groups through role-playing. Participants had many discussions about HIV disclosure to children, discussions that were inspired by case studies.
Particular attention was paid to dealing with teenagers because they have specific needs that are not always adequately considered.  The issue of mourning and how children represent death as well as the issue of palliative care for children were dealt with in critical sessions to help participants deal with these sensitive issues with greater serenity.

From this week spent together the teachers and the GROWING UP team were impressed by how well the participants listened, their sensitivity and their ability to question and learn quickly. Their role is not always easy—they are faced with dramatic situations on an almost daily basis, do not necessarily receive the recognition they deserve, sometimes lack support from other staff and colleagues, and feel isolated. We hope that this seminar, beyond providing participants with useful theoretical information, will have enabled them to strengthen their motivation and realize how critical the role they play in caring for infected children is.

If further proof of their untiring commitment to the service of children were needed, we would cite their decision at the end of the seminar to set up an Internet forum on professional practices. Kudos!

The 5th IAS (International Aids Society) Conference on HIV Pathogenesis, Treatment and Prevention was held last July in Cape Town, South Africa. In this issue we highlight a few presentations that caught our attention.

Improving support for women in their choice of feeding method and during weaning

Given the much higher risks of morbidity observed in children weaned early in the population at large, the importance of the quality of support that women receive when choosing and implementing a feeding method was amply discussed and will be underscored in the upcoming WHO recommendations.
Two interesting studies helped to assess the weaknesses in infant feeding counseling programs.

- The Elisabeth Glaser Foundation (EGPAF) surveyed feeding in babies born to HIV- infected mothers on public sites and sites supported by EGPAF in 16 developing countries. The results show inadequacy in both the quality and quantity of counseling and support to mothers particularly right after the baby’s early diagnosis. On the exclusively public sites, infant feeding did not appear to be a priority-- recommendation are poorly communicated and resources are not adequately made available to health ministers.

- A second study conducted in Kenya by the «Infant & Young Children Project» (IYCN), looked at the quality of nutritional counseling for mothers and babies during weaning, a period we know to be a sensitive one.
Nutritional counseling is often done in group sessions when individual support during the weaning period is important to make sure that each woman is able to put into practice the advice she has received. Individualized counseling is usually given during prenatal visits when the mother has just learnt that her HIV test is positive and this information can create confusion since it is a moment when the person is in a state of shock.
Individualized counseling tends to focus more on infant feeding choices rather than on the weaning period.
Lack of confidentiality in health services is also a constraint. On the one hand, children exposed to HIV are easily identifiable which diminishes both the frequency of their mothers coming back, their chances of getting infant feeding counseling as well as the chances for the baby to be adequately monitored (early diagnosis and treatment). On the other hand, when these mothers are given the opportunity for their babies to be tested for HIV, the conditions for confidentiality are insufficient and therefore they may refuse and an opportunity to offer appropriate follow up care to a potentially infected baby is missed. 
Counselors training on infant feeding is minimal (counseling isn‘t consistent or standardized from one counselor to another which results in confusing messages for mothers) and support for mothers is inadequate especially during the weaning period.

Scaling up of early diagnostic through PCR for a quick uptake on ARV: what are good practices to help retain children?

A study in Swaziland looked at the course of 176 infants who screened positive through DBS PCR at 15 sites in Swaziland between January and August 2008. The doctor received the test results for only 44% of them and 33% were finally provided care and treatment on a site for prescribing ARVs. In July 2009, 34 children out of 176 (19%) had started ARV treatment.
In order to scale up, channels of transporting samples and submitting results to caregivers must imperatively be strengthened as well as the system of reference and counter-referring children to a comprehensive care site.

Men’s involvement helps to improve PMTCT success

There is little data on the issue of male involvement in the pre and postnatal monitoring of their infants (consultations, food). A study conducted in Kenya on 456 women between 1999 and 2003 allows us to learn more about the reasons of their involvement and its impact on vertical transmission.
One hundred forty men participated in the study (31%), 75 accepted to be tested and 42 tested positive. Factors favoring the men’s participation are the disclosure of their wife status, the couple’s conversations about PMTCT and the woman’s ability to persuade her partner to get tested.
Eighty-two children (16%) diagnosed as infected before the age of 12 months. Men’s involvement (testing and participating in the study) is revealed as a protective factor against vertical transmission since it halves the chance of infection of the child within the first 12 months. Similarly, survival was better for children whose fathers have been HIV-tested, for infected children (+ 60%) as well for un-infected children (x2,5).
 

Success of expanded access  programs to pediatric ART in Southeast Asia after 5 years

Because scale-up of access to pediatric ART is recent, knowledge about their effects over the long term remains limited.
The encouraging examples of Thailand (a cohort of 3409 children who initiated ART between 2000 and 2005) and Cambodia (a cohort of 1168 children who started treatment between 2003 and 2007) comprise an additional argument in favor of expanding access to treatment.
In both cases the probability of survival is 93% at 1 year. It is 91% at 3 years in Cambodia and 88% at 5 years in Thailand. Factors associated with survival are a good weight for age and clinical stage indicating initiation of treatment. A CD4 count <100 / mm3 after 2 or 3 years treatment is predictive of failure. In Cambodia, 21 children developed primary resistance to lamivudine (3TC) or to the class of INNRT (NVP and EFV).
Note: In Thailand, care and treatment provided at a community or district hospital (as opposed to referral hospitals), is favorable to survival.

Two trials have reported significant results in support of initial ART in children infected with HIV:

- The PACTG P1060 multicenter trial conducted in South Africa, India, Malawi, Uganda, Zambia and Zimbabwe aimed to assess the quality of virological response at 48 weeks in children treated by first-line NVP-based triple therapy versus a LPV/r-based treatment in two different trials depending on whether or not the children were exposed to single-dose NVP-based prevention prophylaxis to prevent MTCT. The trial including the cohort of HIV-infected children who had taken single dose NVP as perinatal prophylaxis was stopped after the review by an independent committee reported the superiority of 1st line triple therapy based on LVP/r vs. NVP. Failures were related to resistance mutations to NVP and were even higher among infants less than a year old. These results reinforce the critical need to promote triple therapy based on LPV/r in 1st line in children exposed to NVP-prophylaxis-- as is recommended in the April, 2008 WHO technical consultation.

- In South Africa, the Neverest trial initiated LPV/r-based triple therapy between 6 weeks and 2 years of age and in virologically-suppressed children (<400 copies / ml), and evaluated the "switch" to a NVP-based triple therapy (a substance that is accessible, well tolerated and well accepted in children) instead of maintaining the initial LPV/r-based combination therapy in a randomized trial. The trial results show that achieving virological suppression below 50 copies / ml-- a main criteria measured at 52 weeks-- was significantly higher in the NVP "Switch" group (56%), than in the LPV/r " Stay " group (42%) (p <0.001). However, if the criterion was the maintenance of a virological response below 1000 copies / ml then the response in LPV/r arm was superior with 98% suppression versus 78%, respectively (p <0.001) . This trial demonstrates the potential significance of changing treatment regimes to INNRT in long-term tre

Overall it is important to note the improvement in children’s access to antiretrovirals through various experiences of programs in Southern countries. There is an overall clinical, immunological and virological efficacy of antiretroviral treatment but also a delay in children access to antiretroviral, often at an advanced age and immunodeficiency. Overcoming operational difficulties would also help to limit the number of patients who do not return to health centers.