Young Carers

Dr Lucie Cluver

The study is the world’s largest study of AIDS-affected children, and is a collaborative project between the Universities of Oxford, Cape Town and KwaZulu-Natal, with the South African National Government, USAID-PEPFAR, and major NGOs including UNICEF and Save the Children.

The study’s primary aim is to provide a rigorous evidence-base to support improved policy and programmes for children and adolescents affected by AIDS. The study interviewed over 6,800 children and 2,500 of their primary caregivers within three provinces of South Africa, with follow-up after a one year period.

Ethical process

A longitudinal study that addresses issues of AIDS, abuse, sexual health and poverty will raise major ethical issues. These issues were all related to children being identified through the research as being at high risk or experiencing abuse, rape, suicidal planning or health risks (for example children who were AIDS-unwell but whose parents refused to take them for lifesaving treatment). In such cases, referrals and extensive follow-up support was provided by project staff, supporting overburdened local services. Where necessary, children were transported to hospital for treatment.

We had written ethical protocols, based on guidance by UNICEF (Dawes et al, 2007), the Medical Research Council (Seedat, 2004), and the South African Children’s Institute (ACESS, 2002) that were approved by Oxford University, the University of Cape Town, the University of KwaZulu-Natal, and Provincial Health and Education Departments of the Western Cape, Mpumalanga and KwaZulu-Natal. No participant incentives were given, apart from refreshments and certificates.

Confidentiality was maintained, except where participants were at risk of significant harm or requested assistance. Where participants reported abuse, rape or risk of significant harm, immediate referrals were made to child protection and health services. Where prior abuse or rape was no longer occurring, referrals were made to support and counselling services and to HIV/AIDS testing and treatment services where appropriate.

Many services, particularly in very poor parts of South Africa, were not available or not able to address the needs of these children. Social workers and healthcare workers were exhausted and overwhelmed by massive caseloads, often lacking transport to visit children. Sometimes their referral systems were not functioning.

This presented a clear ethical dilemma: to what extent do you interfere in a system, and bypass existing structures in order to save a child’s life? It is possible that this is ethically essential on one level, but damaging on another. In some cases, we were never able to succeed in mitigating risk for a child and we exhausted all our possibilities for intervention.

The children and their families who took part in the research wanted their experiences and stories to be known by those in power. They wanted the research used to influence the policies and services that would be available to children like them in southern and eastern Africa. We consider it an ongoing ethical need to ensure that the findings of the study are used to inform policy.

Lessons

  • Building and supporting the resilience of a fieldwork team in these conditions is an ethical imperative. People exposed to such a high level of human suffering need support from senior management, and access to relief, breaks and holidays to make it possible for them to manage their jobs. We arranged counselling and day trips away to build support within the teams, but we never fully found a solution to this.
  • For many ethical issues that arise in research there is no clear cut solution. Planning research with such potentially vulnerable groups should factor in the resource and time required for potentially high numbers of disclosures that necessitate referrals and extensive follow-up support by project staff.
  • Using the research to make real policy impact was how we could do the best in the long term for these children. With improved services, policies that will best help young people, and clear identification of those most in need, we can hope that future studies would hear less stories of horror, and more of hope.