Collecting data from families and youth affected by HIV and AIDS - methodological and ethical challenges and responses

Purpose: Service providers who aim to meet the needs of vulnerable families affected by HIV and AIDS require information about their circumstances in order to develop responsive services and monitor their effectiveness. However, they may face ethical and methodological dilemmas as part of the data collection process.

Data and Methods: We collected baseline quantitative and qualitative data from households and youths in Zambia, Tanzania, Uganda and Mozambique, as part of efforts to develop and evaluate community-based interventions to improve the wellbeing of children and families affected by HIV and AIDS and other adverse circumstances. Interventions were led by World Vision and Africare under the US Government-funded RAPIDS and COPE programs.

Results: While planning and conducting the baseline assessments, researchers worked together with program staff to respond to a number of ethical and methodological challenges, including developing appropriate comparison and randomization procedures, avoiding to stigmatization of families affected by HIV, and seeking informed consent from children without an adult guardian. Recognizing the need for context-specific responses, the presentation will describe some of the principles for making ethical decisions and the methodological approaches for maintaining research integrity that were employed by the research team.

Recommendations: Community participation in data collection strategy development is crucial. Researchers and service providers need to work together to develop appropriate responses to common challenges in order to collect monitoring and evaluation data.