Population Briefs | January 2006, Vol. 12, No. 1 | HIV/AIDS: Ethical Implications of Working with Children

January 2006, Vol. 12, No. 1

HIV/AIDS
Ethical Implications of Working with Children

To set up and evaluate programs for children and adolescents affected by HIV/AIDS requires solid data on their life situations and needs. Investigators and program managers gathering this information face thorny 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?

Practical guidelines
Few resources 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 practical guidelines for those who work with young people in international settings. The insights and experiences of this group and others working in the field were collected and analyzed in a handbook, copies of which are available free of charge. (To request a print copy, send your mailing address to horizons@popcouncil.org; or you can download a PDF at http://www.popcouncil.org/pdfs/horizons/childrenethics.pdf.)

Identifying challenges
Recognizing that methods for working with adults cannot simply be transferred to young people, this new resource identifies challenges that confront program implementers and investigators who work with children and adolescents and proposes practical approaches to overcoming them.

Among the ethical questions the handbook explores in depth are:

• Is the data collection activity necessary and justified?
• Is the activity designed to elicit valid information?
• Have community and stakeholder concerns been considered?
• Have adverse consequences of the activity been anticipated?
• Are procedures in place to ensure that the activity proceeds ethically?
• Are there a clear plan and adequate funding for follow-up activities?

The handbook 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. These vivid descriptions illustrate real-life struggles with ethical dilemmas and offer useful insights into appropriate approaches to working with youth. They are not examples of best practices: some frankly identify missed opportunities or oversights and examine the lessons to be learned.

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.

Participants discussed the ethical responsibilities of professionals working with children affected by AIDS and other difficult situations, recognizing that such children often face poverty, stigma, or abuse. Participants agreed that program managers and researchers must take steps in advance to ensure 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 participants and covered by the publication are gaining meaningful informed consent from children and creating opportunities for children to participate as advocates on their own behalf in study design, instrument development, and results interpretation.

“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 handbook. “Involving everyone who participates in program development and research is critical to ensuring that these precautions are met.”

Source
Schenk, Katie and Jan Williamson. 2005. Ethical Approaches to Gathering Information from Children and Adolescents in International Settings: Guidelines and Resources. Washington, DC: Population Council. (abstract) (PDF)

Outside funding
U.S. Agency for International Development

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