As the demand grows for support services for children and adolescents affected by HIV/AIDS, so does the need for data to assess whether these programs are truly making a difference. Investigators and program managers gathering this information face new and difficult ethical issues. Are children who lack adult protection and guidance capable of understanding the potential consequences of participating in a study—in other words, can they give truly informed consent? Are survey questions about the death of parents or other sensitive subjects likely to cause anxiety or even emotional damage? Could visits from a researcher “brand” a child as HIV-affected and deepen the stigma he or she may already experience?

Few resources currently exist to help program managers and evaluators deal with the difficult and potentially harmful situations that may arise when working with children affected by HIV/AIDS. At the request of the U.S. Agency for International Development (USAID), a steering group was formed composed of representatives of the Horizons Program, Family Health International’s IMPACT Program, UNICEF, and USAID to develop a practical guidance resource for those who work with young people in international settings. Recognizing that methods for working with adults cannot simply be transferred to young people, the new resource identifies challenges that confront program implementers and investigators who work with children and adolescents and proposes practical approaches to dealing with them. It also provides case studies that highlight the roles of interviewers, program managers, data analysts, and others in ensuring that child-related activities are not harmful or unethical.

“Because of the power imbalance between adult investigators and child informants, gathering information from children requires additional precautions to protect their confidentiality, privacy, and emotional well-being,” said Katie Schenk of Horizons/Population Council, who coordinated the development of the resource. “Involving everyone who participates in programming and research is critical to ensuring that these precautions are met.”

As groundwork for the development of the publication, an expert consultation meeting took place in 2003. The gathering included researchers and service providers with expertise in psychology, child development, ethics, pediatrics, sociology, anthropology, and social work. This broad mix of perspectives and expertise led to a fruitful exchange about both ethical concerns and the practical issues involved in implementing effective standards.

Meeting participants discussed the ethical responsibilities of working with children affected by AIDS and other difficult situations, who often face poverty, stigma, or abuse. Participants agreed that program managers and researchers must take steps in advance to make sure that referral systems to local services are in place to help children in these situations, and that both parents or guardians and children know that abuse will be reported to the appropriate authorities.

Among other topics raised by meeting participants and covered by the publication are gaining meaningful informed consent for children and creating opportunities for children to participate as advocates on their own behalf in study design, instrument development, and results interpretation.

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