social context of disclosing hiv test results: hiv testing in tanzania

4. STUDY DESIGN AND METHODS OF DATA COLLECTION
4.1 Study Design and Methodology
Several methodological challenges related to both sampling and data collection
had to be addressed in this study. The first was how to obtain information about the social
relations of individuals that inform how they make decisions about their own health. The
second was how to ethically identify individuals who have used VCT services, given the
importance of confidentiality and anonymity. The third was how to identify individuals
who have been tested some months earlier and arrange an interview with them. In other
words, what entry points could the study use?
The method for describing social relations follows the lines of early research in
social networks. A description of social relations has several components that may be
elicited in different ways. There are the participants, members of households, and close
friends who are identified with regard to their relationship to Ego (respondent). There are
accounts of recent activities of the respondent—yesterday and during the past week—that
show interactions between the respondent and others. There are accounts of participation
in social groups (clubs, associations, churches, etc.) that indicate personal interest.
Finally, there are the respondents’ own descriptions of their social ties. Information about
all these aspects of social life was solicited as well as the extent to which these aspects
influenced the pattern of disclosure of HIV test results.
The attention paid to social relations stems from several assumptions made by the
study team. First, we assumed that the nature of social relations evaluated through an
examination of the household composition and friendship network as well as daily
activities and a discussion of the social ties and obligations would affect their ability to
show their HIV test results. Since each person has his or her own network of social
relations (family, friends, and acquaintances), it was considered important to consider
their relationships as well as the characteristics of individuals in thinking about the
potential for disclosure. The methodological challenge in evaluating this assumption lies
in the way findings about social relations are collected and the way they are assessed.
The ideal respondent for such a study would be an individual who was tested for
HIV some months earlier, for they would have had time to discuss their test results with
others in the interim period. However, it is not possible to identify such persons from
records of testing facilities because they usually contain only a minimal amount of
personal information about their clients to ensure the confidentiality of the consultation.
In addition, even if it were possible to identify clients from facility records, such
identification may be considered as a breach of confidentiality on the part of the facility.
At the same time, some of the VCT centres in Tanzania do not keep any information of
people who volunteer to take an HIV test at their centres. Hence, simply relying on
records kept in VCT facilities would not have yielded the kind of information that was
necessary for this study.
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