In Their Shoes: ARVs for children ? community-focused delivery and support

Late in 2003, a large group of concerned NGOs set out recommendations to Parliament for the rights and challenges relating to HIV treatment for different age groups of children and youth: babies (under 3 years), young children (3-6), primary-school children (7-11), young teenagers (12-14) and older adolescents (15-18). They drew attention to each group?s needs for special support with adherence to anti-retroviral (ARV) drug courses and emotional health, through regular clinic visits, innovative guidance methods, support groups and in-depth counselling.

HIV and AIDS weaken the framework of children?s basic rights to non-discrimination, to survival and development, and to full participation in matters that involve their own best interests. Vulnerable children ? those with disabilities, living on streets, heading households, without care or family support ? need practical action to ensure that they receive adequate food, shelter, love, education and general care as well as medical treatment. The current reality is that with families losing breadwinners and adult carers to AIDS, children struggle alone with poverty, hunger, illness, lack of schooling and the burden of income generation and caregiving. Many children are tested for HIV without their consent, their HIV status is disclosed to others without their knowledge, and decisions are often made regarding their placement without their consultation. Youngsters without parental support are likely to become sexually active early, or be abused and become infected; those in need of HIV treatment face enormous economic, legal and social barriers, further depleting their physical, emotional and spiritual resources.

Providing children and youth with treatment, care and support as needed, especially if they are impoverished, it is a moral emergency. Medical research shows that HIV infection causes children to fall ill more quickly than do adults, as the virus takes over their bodies within months rather than years, because their immune systems are not fully developed, and are more easily damaged. To prevent this, and to slow down the progression of disease, doctors at the University of KwaZulu-Natal?s Medical School are studying ways of screening babies for early infection and giving them short courses of ARVs to help fight the virus and strengthen their bodies.

Reportedly, little ones receiving treatment from sites like the Sinikithemba Clinic at Durban?s McCord Hospital are doing very well on ARVs, gaining weight and growing up without the frequent coughing, diarrhoea and thrush caused by AIDS-related infections. Their CD4 (fighter) cell counts are increasing, their viral loads are under control, and they are active and alert. Only 5,5% of children on ARVs experience side-effects from the drugs - such as nausea, headaches, a sour taste, tingling pain in hands and feet, skin-rash and stomach-upset (the percentage for adults is higher); for most patients, these effects last for only a few weeks.

Although ARVs cannot cure HIV and AIDS, the drugs offer patients a longer period of healthy life. The ARV programme for children is not simple: the correct doses must be given for absorption by a child?s body, and these are different from the adult dosages. If even a single dose is missed, the medicine levels in the body drop and the virus gains control, changing its structure so that the medicine is no longer effective. At least one dedicated carer should be available to help the child take the required amount of medicine regularly, at the set times, with water or food as necessary, to ensure proper nutrition and rest, and attendance at all clinic visits. For a child to come to terms with this programme as a life-long routine, and to understand the consequences of rejecting it, a kind and loving adult who has been fully informed and coached in answering questions and coping with the child?s resistant responses calmly, firmly and clearly, is needed to commit to this role.

As effective and sustained HIV treatment becomes more accessible for both children and adults, it falls to communities in social sectors across the board to support healthcare workers in this roll-out. Strongly linked community organisations, health structures and businesses could mobilise for free provision of information and treatment literacy, initiatives for economic and infrastructural development and social support, and service delivery where people live. Activating and strengthening connections between, with and within communities is the key to this vision.

[Sources: Health-e News, Children?s Rights Centre, Children First, International HIV/AIDS Alliance, Joint Civil Society Network]

Creative tools, children?s voices and HIV/AIDS:

HIGHLY EFFECTIVE ART

HIVAN has developed a series of skills-development workshops for HIV-positive children, using cultural arts activities as a means of affirming their humanity, promise and power, and giving space for their stories of diagnosis, disclosure, adherence to ARVs and living with HIV and AIDS. The outcome of the Highly Effective Art (HEART) workshops, which were run over the past 12 months with youngsters from Sinikithemba Care Centre in Durban, is the production of the first in a series of books for young readers, written and illustrated by the participants.

To develop this programme, the HIVAN HEART team facilitated local accessibility and participation by building relationships with the children?s parents, guardians, teachers, medical practitioners, social workers and caregivers, while keep the young voices at the centre of the project. Trainers were taught to lead the children through specialised methods of expression, including story-telling, focus groups, role-playing, art-making, drama and journal-writing. Practical, fun exercises for ARV adherence promotion included making pill-charts and pill-boxes as ?reminder? tools.

These activities opened up the participants? eyes, hands, hearts and minds, so that they came to understand more about themselves and each other as they journeyed through their thoughts, feelings and beliefs. This developed their interpersonal communication skills, building a sense of ownership and authority for the group, and of belonging and meaning for the individual children.

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