Investigating HIV-status disclosure: A three step procedure

Alexandra L. Dima, SE Stutterheim, Ramsey Lyimo, M. de Bruin

    Research output: Chapter in Book/Report/Conference proceedingConference Abstract/Poster in proceedingProfessional


    Background: Disclosing one’s HIV status can have a substantial impact on the well-being of people
    living with HIV, and on preventing HIV transmission. Previous studies have reported beneficial effects
    such as increased social support, less stigmatization, and improved treatment adherence, but also negative
    influences such as associations with increased stigmatization. To better understand the complex role of
    disclosure, we need to rethink how disclosure is considered in research and clinical practice: is it one
    event, one process consisting of multiple events, or a collection of distinct processes? Most studies have
    assumed that disclosure is a single event or process, but evidence has started to gather in support of the
    fact that HIV disclosure may have different occurrence rates and different causes and consequences
    depending on disclosure target and intent. Therefore it is important to examine the structure of disclosure
    events before studying its role in HIV treatment and prevention.
    Methods: We present a 3-step procedure for studying disclosure quantitatively that takes into account
    disclosure target and intent and their possible influences on the structure of disclosure. This procedure
    consists of developing a list of relevant actor-categories for the study population, examining the structure
    of voluntary and involuntary disclosure via Mokken Scaling, and examined the relationships between the
    resulting disclosure dimensions and stigma and social support.
    Results: Reports of voluntary and involuntary disclosure from 158 people living with HIV in Kilimanjaro,
    Tanzania, were collected via interviews in the spring of 2010. For voluntary disclosure, we identified two
    multi-actor clusters, family and community, and two single-category dimensions, partner and children.
    Involuntary disclosure consisted of several unrelated single- or two-category dimensions. Correlation
    analyses revealed distinct relationships for each disclosure dimension.
    Conclusions: Assessing HIV disclosure as a single process may lead to incorrect conclusions about
    causes and consequences of disclosure. We therefore recommend using this methodology to investigate
    disclosure processes in HIV research. Understanding the process of disclosure itself prior to examining its
    relationships with other constructs would increase the quality of our evidence base regarding the process
    (es) of sharing this information
    Original languageEnglish
    Title of host publication16th BIPAI Network Meeting
    Subtitle of host publicationAbstract Book
    ChapterIssues in adherence and disclosure
    Number of pages1
    Publication statusPublished - 2014


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