Capacity Assessment Tool - Children's Informed Consent for HIV Testing

WHY TEST CHILDREN?

Many social factors such as stigma and discrimination act as barriers to HIV testing, which can result in delays in establishing children's (and their caregivers') HIV status.

Acknowledging these complexities, it is crucial that we promote greater uptake of HIV testing among children - because not testing them can have serious health and social implications for those at risk or infected.

There are numerous benefits to testing children for HIV, not the least being the health advantages of early diagnosis, and enabling their access to antiretroviral medication.

LEGAL AND POLICY OBLIGATIONS IN SOUTH AFRICA

South African legislation allows for children from the age of 12 years to give consent for HIV testing without a caregiver's permission, provided that HIV testing is done in the context of:

• the best interests of the child;
• being administered by a registered professional;
• confirming the child's "sufficient maturity and understanding".

WHY WAS A CAPACITY ASSESSMENT TOOL NEEDED?

The rationale for Zoë-Life to develop a Capacity Assessment Tool (CAT) was derived from these legal and ethical requirements for HIV testing of children. There was no readily accessible capacity-to-consent tool that could be administered by a lay counsellor with the support of a registered professional such as a nurse or social worker.

Such a tool was required to ensure that the consent given would be valid and in the best interests of the child, by measuring the child's knowledge and understanding of the potential risks, benefits, outcomes and social implications of being tested.

The best interests of the child should be determined by balancing the legal implications, parental or caregiver's opinion, physical, social and psychosocial implications, and the child's own views.

THE TOOL:

• assesses capacity in terms of indicators in various domains;
• may be used either before or during pre-test counselling;
• involves a process of interaction between the assessor and child;
• bases assessment on observation throughout the process, rather than on a specific question;
• uses a set of ratings for each domain, with the outcome being a summarised, overall judgment of the child's capacity to consent, and whether testing is in his or her best interests.

For more details on the Tool, read here

IMPLEMENTATION

As partners in a Health Survey of vulnerable children undertaken in 2009 by the Human Sciences Research Council, four Zoë-Life counsellors conducted HIV counselling and testing of children at Umthombo Safe Space, a venue in Durban where various activities are hosted for street children. Consent for HIV testing was distinguished from consent for participation in the research, which was designed to determine HIV prevalence among street children.

To ensure that the project complied with all legal and ethical considerations about informed consent for testing children, Zoë-Life investigated various gaps in policy guidelines in this regard. Testing vulnerable children, especially those living on the street and exposed to substance abuse, serious psycho-social problems and incapacity at many levels, required the development of a capacity-to-consent tool.

Zoë-Life worked in collaboration with HSRC partners to develop a capacity to consent tool. Counselling staff with extensive experience in working with children were selected for special training by our resident psychologist on the Standard Operation Procedures for the administration and interpretation of the Tool. The capacity-to-consent Tool was then applied in the field, in collaboration with Umthombo childcare workers, during individual counselling sessions with each child and after conducting a Health Information Talk.

The counsellors reported that the Tool had been easy to administer, with accessible language that they could translate for the children; it was the correct length for full engagement with the child, and it covered all aspects needed for reliable assessment.
They also found that the Tool has general applicability, and could be used in a variety of settings to measure the capacity-to-consent of any adult or child, whether or not they had been traumatised, as a standard component in pre-test counselling.

LAY COUNSELLOR FEEDBACK

• "[This tool is] very necessary because, besides a person being high on drugs, a person emotionally may not be ready to test. This tool helped. It was ethical to check all these things to ensure that the client is ready and understands the implications of testing."

• "So we don't end up testing a child that does not understand the implications. After testing, decisions need to be made by the client. It is not possible to make these decisions if you are high or emotionally you are not ready."

• "Because these children are like orphans, orphans cannot come with caregivers, so because they were by themselves, we had to do the right thing by applying the assessment tool so that the children could understand on their own."

• "It helps protect both client and counsellor, because the child will understand the real reason to do the test; whether he wants to continue doing the test or not ... and for the counsellor to be able to weigh up whether it is the right time for the client, or the client needs more time to prepare, or if there are other issues needing attention before doing the test ... it helps the counsellor to feel reassured regarding the confidentiality and legal part of the testing."

• "These children are different. Most of them, their social background is abusive homes. That is what they report; that is why they are on the street. So it is important to see if they have the ability to understand and mentally consent for testing. This helps them make an informed decision on HIV testing."

CONCLUSIONS

• Legislation that makes provision for testing of children is welcome.
• Typically, there is a wide gap between legislation and implementation.
• Policy, guidelines and tools help to translate research findings into recommended practice.
• Partnerships with child rights organisations, child and health service providers, legal experts, government officials and researchers are essential.