How specific end users interpret HIV/AIDS biomedical knowledge

This paper reports on a study of HIV diagnosed respondents own understanding of the diagnostic/prognostic sero-tests routinely deployed within the field of HIV/AIDS biomedicine. Study respondents were consensually recruited from multiple
community-based sites across one country inside the United
Kingdom. All respondents undertook semi-structured interviews
on their experiences of HIV/AIDS testing following serodiagnosis. Interviews were transcribed and a discourse analysis was undertaken on the transcribed data in relation to user understanding of the three key HIV/AIDS tests: HIV antibodytests, T cell or CD4 counts, as well as viral load or polymerase chain reaction tests. The theoretical framework for the study was based on a critical appraisal of HIV/AIDS biomedicine and its associated technological frames. A discourse analytic method was developed that focused on the modal affinity markers within the transcribed data (relating to respondents' co-constructions of each test) as users reworked the 'official' script of the tests. The
findings showed that end users' own theorizing reflected the
autonomous properties (or caveats) of the tests so further
highlighting problems over the utility of these tests for illness
prediction, especially when the predictions implied by the official
test scripts actually failed. End users actively and fluidly engaged
(and re-engaged) with different statistical/epidemiological frames
of meaning for HIV/AIDS, thereby interpreting (and reinterpreting)
sero-test results. End users' contingent and fluid
affinities for the different frames of meaning also reflected
different forms of judgment about HIV/AIDS biomedicine, based
on different forms of knowledge. This particular lay
epistemology was characterized by uncertainty about, skepticism
of, and resistance to, the dominant retroviral paradigm of
HIV/AIDS so directly affecting end users' behavioral intentions,
perspectives and viewpoints. This lay epistemology also
underpinned a continuum of end user responses to the 'true'
nature and technical limits of the technology which epitomize
both the characteristics of 'HIV treatment
compliance/concordance' and those of 'HIV/AIDS dissidence' as
perhaps a new social movement. It is argued that greater
transparency over public experiences of these technical caveats is
congruent with the spirit of quality assurance and current modes
of socio-technical user engagement. The findings underline a
need for better knowledge on the 'expectation gap' between test
performance/caveats and how these autonomous phenomena are
prospectively experienced and understood by specific groups of
end users. A different mode of socio-technical user engagement
is argued for that widens the scope for user evaluation, from that
of a downstream mode of engagement with operational aspects of
technical performativity, towards a more 'upstream' mode that
engages users with formulating the scientific intentions of
technical designs and the nature of the official test scripts.