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Katie D.
Schenk, Lou Apicella,
Lewis
Ndhlovu, Stephen Tembo, Andson Nsune, RAPIDS, and COPE.
"Collecting data from families and youth affected by HIV and
AIDS: Methodological and ethical challenges and responses."
ABSTRACT
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 youth in Mozambique, Tanzania, Uganda, and Zambia as
part of efforts to develop and evaluate community-based
interventions to improve the well-being 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 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.
Learning objective
By the end of the presentation, participants will be able to:
- Identify some of the methodological and ethical challenges to
community-based data collection among families and youth in high
HIV prevalence settings and potential responses.
Poster Session 5015.0—Topics in HIV/AIDS
Wednesday, 7 November 2007,
8:30–9:30
am
APHA 2007 Conference Web site
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