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DIAGNOSTIC TECHNOLOGIES-IN-
PRACTICE:
GAY MEN‟S NARRATIVES OF THEIR ACUTE OR
RECENT HIV INFECTION DIAGNOSIS EXPERIENCES
Daniel Grace, Malcolm Steinberg, Michael Kwag,
Sarah A. Chown, Glenn Doupe, Terry Trussler,
Michael Rekart and Mark Gilbert
CIHR Team in the Study of Acute HIV in Gay Men
DANIEL GRACE, PHD
UNIVERSITY OF BRITISH COLUMBIA, FACULTY OF MEDICINE
DANIEL.GRACE@BCCDC.CA
Context
Enhanced HIV testing technology
Methods
Findings
Coming to know one‟s HIV-positive
status
Receiving an acute HIV diagnosis
Discussion
Conclusion
OUTLINE
2
CONTEXT: HIV AMONG GAY, BISEXUAL
AND OTHER MSM IN BC
3
 Illustrates the importance of
advancements in HIV testing
technologies that can detect AHI
 For more information visit:
 www.acutehivstudy.com
 www.checkhimout.ca/hottest
“HOTTEST AT THE START”:
ACUTE HIV INFECTION
“Hottest at the Start” AHI campaign
(Health Initiative for Men, Vancouver, 2011)
4
Nucleic acid
amplification testing
(NAAT) introduced in
Vancouver
Prevention counselling,
sexual contact tracing
and earlier treatment
debut potential benefits
associated with early
diagnosis (Hogg et al., 2012)
ENHANCED TESTING TECHNOLOGY
5
“What are you waiting for?” testing campaign
(Health Initiative for Men)
PARTICIPANT SELECTION PROCESS
AND STUDY ACTIVITIES (HIV-POSITIVE COHORT)
HIV-positive cohort
1a
(~day 7)
1b
(~day 14)
2a
(~day 30)
2b
(~day 45)
3a
(~day 90)
4a &
3b
(~day 180)
5a
(~day 270)
6a &
4b
(~day 360)
Quant #1
Network. #1
Quant #2
Network. #2
Quant #3
Network #3
Quant #4
Network. #4
Quant. #5
Network. #5
Quant #6
Network. #6
Qual. #1 Qual. #2 Qual. #3 Qual. #4
n= 25Sign
Consent
Form
Participants
identified
and
recruited
6
 Recruited at six clinical sites in Vancouver
 19% of eligible participants were recruited
(n=25)
 Acute (n=13) and recent (n=12) diagnoses
 Year-long mixed-methods study
 Self-administered questionnaires
 Semi-structured face-to-face interviews
 Analysis of T1 interviews
 Independently coded by two researchers and
compared (Creswell, 2003; Mason, 2005)
METHODS
7
DEMOGRAPHICS (N=25)
The majority of participants:
Lived in Vancouver (79.2%) at the time of
enrollment
Identify as gay (96%)
Are single (68%)
Are over 30 (80%) and Caucasian (72%)
Had employed full-time (64%)
Reported completing college or university
(64%)
Mean income was between $30,001-
$50,000 8
 Coming to know one‟s HIV-positive status (n=25)
 Testing rationale & expectation of results
 Delivery of results over the telephone
 Delivery of results in clinical settings
 Receiving an acute HIV diagnosis (n=13)
 Initial provider and patient uncertainty about HIV test
results
 Uncertainty about the meaning of acute infection
 Relationship to starting treatment
 Relationship to having sex
 Relationship to identity formation as an HIV positive man
* Other key domains beyond the scope of the data presented
today (e.g., likely infection event; issue of testing and
temporality; insights regarding syndemic production)
FINDINGS*
9
 Seroconversion symptoms informed one participant‟s
expectation of the results:
 I think that’s why I knew before I got the results, that, you
know, this was not just a flu, and I had read about it
because obviously I was very concerned about it, so I read
a lot of information on the internet on how it happened.
And when I got that flu, and then I was so sick, and I
barely moved, and actually I went to St. Paul’s [Hospital]
because I was burning fever. And I just knew that that was
it. (32 years old, acute HIV infection)
 Another participant sought
a routine test:
 And after eighteen times two, thirty six results, I got used
to the idea that it’s going to be negative every time. (37
years old, recent HIV infection)
TESTING RATIONALE &
EXPECTED RESULTS
10
Phone calls from clinicians
were an indicator of HIV-positive
test results:
But at that moment I knew
something was wrong […] I said, like, you know
what? I think I’m positive. Most likely. (31 years old,
acute HIV infection)
Receiving results via phone in unexpected
circumstances was challenging:
I was in the supply room, and I had to go back to
the front desk and do my job. (45 year old, recent HIV
infection)
DELIVERY OF RESULTS VIA PHONE
11
Overwhelmingly, participants received strong
support from clinicians:
I was treated with a lot of respect, with a lot of love
and a lot of compassion. I think compassion is a
main word. So, no, I would say I wouldn’t change
anything. (32 years old, acute HIV infection)
Some participants reported being relieved once
an official diagnosis was given:
In a way, I felt relieved, because at least I knew and
at least the uncertainty was over. So now there was,
like, a game plan we could follow to get on with my
life. (44 years old, acute HIV infection)
DELIVERY OF RESULTS IN CLINICAL
SETTINGS
12
Participants diagnosed with AHI reflected on
five interconnected themes:
Initial provider and patient uncertainty about HIV
test results
Uncertainty about the meaning of acute infection
Relationship to starting treatment
Relationship to having sex
Relationship to identity formation as an HIV
positive man
MAKING SENSE OF AN ACUTE DIAGNOSIS
(N=13)
13
 Some participants perceived clinicians to be uncertain
about acute HIV test results:
 Everything was good until he got to the HIV test and he
looked very puzzled because the results were confusing or
conflicting and the results came back negative. However,
there was uh, one other, blood screen test which is very
new, was the early detection. When I met, showed the
presence of antibodies, so, he didn’t seem too concerned
about it, um, and I wasn’t either cause he was saying that
there you know, could be false [positive] […] But then I got
a phone call from him […] And he said that there was the
possibility of an early infection. That he wanted me to do
more blood work, uh, the next day. Uh, so I was very
concerned and very upset at that point. Uh, confused and
uh, didn’t know what to make of it. (55 years old, acute HIV
infection)
UNCERTAINTY ABOUT HIV TEST RESULTS
14
Participants were confused
about the meaning of acute
HIV infection:
At that point I still wasn't exactly
sure what acutely infected meant. .
I know it's a high viral load, which means the
virus was extremely, you know, high. My immune
system was extremely low, obviously. So I was
just worried about getting sick with a flu or
something. […] I was just confused, you know. I
didn't really know, understand what exactly my
stage was, and you know, I was just kind of
worried about it.
(21 years old, acute HIV infection)
UNCERTAINTY ABOUT ACUTE HIV
INFECTION
15
High viral loads was a motivating factor
for some participants in starting
treatment immediately:
I think it was because my counts went so
high, and my CD4s dropped so low, whether
they thought they were going to come back
up or not, but they just decided to, say, “Go on it
right away.” And, I mean, you know, the way that
I am right now, I'm undetectable, and my CD4s
are up, at this point, I expect to find them
somewhere between 350 and 450 at this point.
You know, from a low of 250, when they took the
first one. But they were already up at 350 by the
time I got my second test results, after a month
on the medication, three weeks on the
medication, so. (64 years old, acute HIV infection)
TasP logic informing decision-making?
RELATIONSHIP TO STARTING TREATMENT
16
Participants reduced their
sexual activity during the
acute phase of their
infection:
Well, it definitely made me
terrified of having sex at
all, because I know how
infectious one is in that early
stage. So it just definitely just
made me completely step back
from sex for awhile.
(30 years old, acute HIV
infection)
Problem with “behaviour
change” logic (presuppose
particular actor?)
RELATIONSHIP TO HAVING SEX
17
Acute diagnosis had very little impact
on the ways most participants viewed
themselves as HIV-positive men
I don't know, before, when I was
negative, being positive is positive.
Either acute or they're not acute. Many
people don't know about this phase, so it's
just the fact that you are positive. Like, I
don't know, before if somebody said, like,
okay, I'm positive, but my viral load is
undetectable, or someone is, like, oh, I'm
positive but my viral load is half a million,
to me, you're positive, period.
(31 years old, acute HIV infection)
RELATIONSHIP TO IDENTITY FORMATION
18
 Importance of viewing NAAT technology-in-practice
 View as social process in everyday world
 Shifting technologically-mediated (broadly defined)
experiences of learning of HIV-positive serostatus
 New diagnostic category of AHI has varying impacts at
individual level
 Ensure continued clinician education about virological
and immunological responses to AHI
 Provide positive NAAT results to patients in a sensitive
and timely fashion
DISCUSSION
19
Diagnosing HIV during early stages of infection
is a technologically-enabled process
Need to consider the relationships between new
HIV „technology-in-practice‟ (Timmermans and
Berg, 2003) and the users of these medical
technologies (e.g., patients and providers)
Beyond technological determinism
Beyond social essentialism
“Beyond criticism” (Timmermans and Berg, 2003: 97)
 “technologies are embedded in relations of other
tools, practices, groups, professionals, and patients and it is through
their location in these heterogeneous networks that treatment, or
any other action, is possible in health care” (Timmermans and
Berg, 2003: 104).
VIEWING DIAGNOSTIC
TECHNOLOGIES-IN-PRACTICE
20
 Provide insight into social structure and
institutional coordination of care (Pierret, 2003)
 Including albeit beyond only looking at process of
meaning-making and coping methods and strategies in
illness experience data
 Dialectic between individual (micro level) and
structural (macro level) experiences of illness
represents the challenging area for investigation
 “The challenge is to define a paradigm and
methodology for handling the problems related to the
social structure. This entails working out theories about
the interrelations, reciprocal effects and feedback
between subjectivity, cultural factors and social
structure” (Pierret, 2003: 17).
GETTING TO STRUCTURE
21
CONCLUSION
Individual experiences with
technologies-in-practice reveal
information that can be used to
strengthen institutional processes
Requires thinking beyond individual
behaviours and experiences related to
diagnosis
1. Further provider education
2. Supporting communication
strategies
3. Addressing new psychosocial
challenges created*
*these findings are preliminary and subject to revision
22
 Research Participants
 The Canadian Institutes of Health
Research (CIHR)
 Health Initiative for Men
 The CIHR Team in the Study of
Acute HIV Infection in Gay Men
 A special thank you to:
 Mark Gilbert
 Malcolm Steinberg
 Michael Kwag
 Sarah Chown
 Terry Trussler
 Adriana Nohpal
 Darlene Taylor
 Cory Genereaux
ACKNOWLEDGEMENTS
For more information please contact Dr. Daniel Grace,
University of British Columbia, Faculty of Medicine: Daniel.Grace@bccdc.ca 23
QUESTION
S &
COMMENT
S
BIBLIOGRAPHY
Brenner B. G., Roger M., Routy, J-P, Moisi, D., Ntemgwa, M., Matte C. … Quebec
Primary HIV Infection Study Group. (2007). High rates of forward transmission events
after acute/early HIV-1 infection. Journal of Infectious Diseases, 195 (7), 951-959.
Creswell, J. W. 2003. Research design: qualitative, quantitative, and mixed method
approaches. 2nd ed. Thousand Oaks, CA: Sage Publications.
Fox, J., White, P. J., Macdonald, N., Weber, J., McClure, M., Fidler, S., … Ward, H.
(2009). Reductions in HIV transmission risk behaviour following diagnosis of primary
HIV infection: a cohort of high-risk men who have sex with men. HIV Medicine, 10, (7),
432–438. doi: 10.1111/j.1468-1293.2009.00708.x
Hogg, R. S., Heath, K., Lima, V.D., Nosyk, B., Kanters, S., Wood, E., … Montaner, J. S.
G. (2012). Disparities in the Burden of HIV/AIDS in Canada. PLoS ONE, 7, (11),
e47260. doi:10.1371/journal.pone.0047260.
Marks, G., Crepaz, N., Senterfitt, J. W., & Janssen, R.S. (2005). Meta-analysis of high-
risk sexual behavior in persons aware and unaware they are infected with HIV in the
United States: implications for HIV prevention programs. Journal of Acquired Immune
Deficiency Syndrome, 39, (4), 446-453.
Mason, J. 2005. Qualitative Researching. London: Sage Publications Ltd.
Timmermans, S., & Berg, M. (2003). The practice of medical technology. Sociology of
Health and Illness.25, 97-114.
Pierret, J. (2003). The illness experience: state of knowledge and perspectives for
research. Sociology of Health & Illness, 25, 4-22.
Vallabhaneni, S., McConnell, J. J., Loeb, L., Hartogensis, W., Hecht, F.M., Grant, R.M.,
& Pilcher, C. D. (2013). Changes in Seroadaptive Practices from before to after
Diagnosis of Recent HIV Infection among Men Who Have Sex with Men. PLoS One,8,
(2): 1-7.
25
EXTRA SLIDES
26
INDIGENOUS LANDS
27

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1045 3 1 final-beyond behaviours slides april 15 v5 Daniel Grace

  • 1. DIAGNOSTIC TECHNOLOGIES-IN- PRACTICE: GAY MEN‟S NARRATIVES OF THEIR ACUTE OR RECENT HIV INFECTION DIAGNOSIS EXPERIENCES Daniel Grace, Malcolm Steinberg, Michael Kwag, Sarah A. Chown, Glenn Doupe, Terry Trussler, Michael Rekart and Mark Gilbert CIHR Team in the Study of Acute HIV in Gay Men DANIEL GRACE, PHD UNIVERSITY OF BRITISH COLUMBIA, FACULTY OF MEDICINE DANIEL.GRACE@BCCDC.CA
  • 2. Context Enhanced HIV testing technology Methods Findings Coming to know one‟s HIV-positive status Receiving an acute HIV diagnosis Discussion Conclusion OUTLINE 2
  • 3. CONTEXT: HIV AMONG GAY, BISEXUAL AND OTHER MSM IN BC 3
  • 4.  Illustrates the importance of advancements in HIV testing technologies that can detect AHI  For more information visit:  www.acutehivstudy.com  www.checkhimout.ca/hottest “HOTTEST AT THE START”: ACUTE HIV INFECTION “Hottest at the Start” AHI campaign (Health Initiative for Men, Vancouver, 2011) 4
  • 5. Nucleic acid amplification testing (NAAT) introduced in Vancouver Prevention counselling, sexual contact tracing and earlier treatment debut potential benefits associated with early diagnosis (Hogg et al., 2012) ENHANCED TESTING TECHNOLOGY 5 “What are you waiting for?” testing campaign (Health Initiative for Men)
  • 6. PARTICIPANT SELECTION PROCESS AND STUDY ACTIVITIES (HIV-POSITIVE COHORT) HIV-positive cohort 1a (~day 7) 1b (~day 14) 2a (~day 30) 2b (~day 45) 3a (~day 90) 4a & 3b (~day 180) 5a (~day 270) 6a & 4b (~day 360) Quant #1 Network. #1 Quant #2 Network. #2 Quant #3 Network #3 Quant #4 Network. #4 Quant. #5 Network. #5 Quant #6 Network. #6 Qual. #1 Qual. #2 Qual. #3 Qual. #4 n= 25Sign Consent Form Participants identified and recruited 6
  • 7.  Recruited at six clinical sites in Vancouver  19% of eligible participants were recruited (n=25)  Acute (n=13) and recent (n=12) diagnoses  Year-long mixed-methods study  Self-administered questionnaires  Semi-structured face-to-face interviews  Analysis of T1 interviews  Independently coded by two researchers and compared (Creswell, 2003; Mason, 2005) METHODS 7
  • 8. DEMOGRAPHICS (N=25) The majority of participants: Lived in Vancouver (79.2%) at the time of enrollment Identify as gay (96%) Are single (68%) Are over 30 (80%) and Caucasian (72%) Had employed full-time (64%) Reported completing college or university (64%) Mean income was between $30,001- $50,000 8
  • 9.  Coming to know one‟s HIV-positive status (n=25)  Testing rationale & expectation of results  Delivery of results over the telephone  Delivery of results in clinical settings  Receiving an acute HIV diagnosis (n=13)  Initial provider and patient uncertainty about HIV test results  Uncertainty about the meaning of acute infection  Relationship to starting treatment  Relationship to having sex  Relationship to identity formation as an HIV positive man * Other key domains beyond the scope of the data presented today (e.g., likely infection event; issue of testing and temporality; insights regarding syndemic production) FINDINGS* 9
  • 10.  Seroconversion symptoms informed one participant‟s expectation of the results:  I think that’s why I knew before I got the results, that, you know, this was not just a flu, and I had read about it because obviously I was very concerned about it, so I read a lot of information on the internet on how it happened. And when I got that flu, and then I was so sick, and I barely moved, and actually I went to St. Paul’s [Hospital] because I was burning fever. And I just knew that that was it. (32 years old, acute HIV infection)  Another participant sought a routine test:  And after eighteen times two, thirty six results, I got used to the idea that it’s going to be negative every time. (37 years old, recent HIV infection) TESTING RATIONALE & EXPECTED RESULTS 10
  • 11. Phone calls from clinicians were an indicator of HIV-positive test results: But at that moment I knew something was wrong […] I said, like, you know what? I think I’m positive. Most likely. (31 years old, acute HIV infection) Receiving results via phone in unexpected circumstances was challenging: I was in the supply room, and I had to go back to the front desk and do my job. (45 year old, recent HIV infection) DELIVERY OF RESULTS VIA PHONE 11
  • 12. Overwhelmingly, participants received strong support from clinicians: I was treated with a lot of respect, with a lot of love and a lot of compassion. I think compassion is a main word. So, no, I would say I wouldn’t change anything. (32 years old, acute HIV infection) Some participants reported being relieved once an official diagnosis was given: In a way, I felt relieved, because at least I knew and at least the uncertainty was over. So now there was, like, a game plan we could follow to get on with my life. (44 years old, acute HIV infection) DELIVERY OF RESULTS IN CLINICAL SETTINGS 12
  • 13. Participants diagnosed with AHI reflected on five interconnected themes: Initial provider and patient uncertainty about HIV test results Uncertainty about the meaning of acute infection Relationship to starting treatment Relationship to having sex Relationship to identity formation as an HIV positive man MAKING SENSE OF AN ACUTE DIAGNOSIS (N=13) 13
  • 14.  Some participants perceived clinicians to be uncertain about acute HIV test results:  Everything was good until he got to the HIV test and he looked very puzzled because the results were confusing or conflicting and the results came back negative. However, there was uh, one other, blood screen test which is very new, was the early detection. When I met, showed the presence of antibodies, so, he didn’t seem too concerned about it, um, and I wasn’t either cause he was saying that there you know, could be false [positive] […] But then I got a phone call from him […] And he said that there was the possibility of an early infection. That he wanted me to do more blood work, uh, the next day. Uh, so I was very concerned and very upset at that point. Uh, confused and uh, didn’t know what to make of it. (55 years old, acute HIV infection) UNCERTAINTY ABOUT HIV TEST RESULTS 14
  • 15. Participants were confused about the meaning of acute HIV infection: At that point I still wasn't exactly sure what acutely infected meant. . I know it's a high viral load, which means the virus was extremely, you know, high. My immune system was extremely low, obviously. So I was just worried about getting sick with a flu or something. […] I was just confused, you know. I didn't really know, understand what exactly my stage was, and you know, I was just kind of worried about it. (21 years old, acute HIV infection) UNCERTAINTY ABOUT ACUTE HIV INFECTION 15
  • 16. High viral loads was a motivating factor for some participants in starting treatment immediately: I think it was because my counts went so high, and my CD4s dropped so low, whether they thought they were going to come back up or not, but they just decided to, say, “Go on it right away.” And, I mean, you know, the way that I am right now, I'm undetectable, and my CD4s are up, at this point, I expect to find them somewhere between 350 and 450 at this point. You know, from a low of 250, when they took the first one. But they were already up at 350 by the time I got my second test results, after a month on the medication, three weeks on the medication, so. (64 years old, acute HIV infection) TasP logic informing decision-making? RELATIONSHIP TO STARTING TREATMENT 16
  • 17. Participants reduced their sexual activity during the acute phase of their infection: Well, it definitely made me terrified of having sex at all, because I know how infectious one is in that early stage. So it just definitely just made me completely step back from sex for awhile. (30 years old, acute HIV infection) Problem with “behaviour change” logic (presuppose particular actor?) RELATIONSHIP TO HAVING SEX 17
  • 18. Acute diagnosis had very little impact on the ways most participants viewed themselves as HIV-positive men I don't know, before, when I was negative, being positive is positive. Either acute or they're not acute. Many people don't know about this phase, so it's just the fact that you are positive. Like, I don't know, before if somebody said, like, okay, I'm positive, but my viral load is undetectable, or someone is, like, oh, I'm positive but my viral load is half a million, to me, you're positive, period. (31 years old, acute HIV infection) RELATIONSHIP TO IDENTITY FORMATION 18
  • 19.  Importance of viewing NAAT technology-in-practice  View as social process in everyday world  Shifting technologically-mediated (broadly defined) experiences of learning of HIV-positive serostatus  New diagnostic category of AHI has varying impacts at individual level  Ensure continued clinician education about virological and immunological responses to AHI  Provide positive NAAT results to patients in a sensitive and timely fashion DISCUSSION 19
  • 20. Diagnosing HIV during early stages of infection is a technologically-enabled process Need to consider the relationships between new HIV „technology-in-practice‟ (Timmermans and Berg, 2003) and the users of these medical technologies (e.g., patients and providers) Beyond technological determinism Beyond social essentialism “Beyond criticism” (Timmermans and Berg, 2003: 97)  “technologies are embedded in relations of other tools, practices, groups, professionals, and patients and it is through their location in these heterogeneous networks that treatment, or any other action, is possible in health care” (Timmermans and Berg, 2003: 104). VIEWING DIAGNOSTIC TECHNOLOGIES-IN-PRACTICE 20
  • 21.  Provide insight into social structure and institutional coordination of care (Pierret, 2003)  Including albeit beyond only looking at process of meaning-making and coping methods and strategies in illness experience data  Dialectic between individual (micro level) and structural (macro level) experiences of illness represents the challenging area for investigation  “The challenge is to define a paradigm and methodology for handling the problems related to the social structure. This entails working out theories about the interrelations, reciprocal effects and feedback between subjectivity, cultural factors and social structure” (Pierret, 2003: 17). GETTING TO STRUCTURE 21
  • 22. CONCLUSION Individual experiences with technologies-in-practice reveal information that can be used to strengthen institutional processes Requires thinking beyond individual behaviours and experiences related to diagnosis 1. Further provider education 2. Supporting communication strategies 3. Addressing new psychosocial challenges created* *these findings are preliminary and subject to revision 22
  • 23.  Research Participants  The Canadian Institutes of Health Research (CIHR)  Health Initiative for Men  The CIHR Team in the Study of Acute HIV Infection in Gay Men  A special thank you to:  Mark Gilbert  Malcolm Steinberg  Michael Kwag  Sarah Chown  Terry Trussler  Adriana Nohpal  Darlene Taylor  Cory Genereaux ACKNOWLEDGEMENTS For more information please contact Dr. Daniel Grace, University of British Columbia, Faculty of Medicine: Daniel.Grace@bccdc.ca 23
  • 25. BIBLIOGRAPHY Brenner B. G., Roger M., Routy, J-P, Moisi, D., Ntemgwa, M., Matte C. … Quebec Primary HIV Infection Study Group. (2007). High rates of forward transmission events after acute/early HIV-1 infection. Journal of Infectious Diseases, 195 (7), 951-959. Creswell, J. W. 2003. Research design: qualitative, quantitative, and mixed method approaches. 2nd ed. Thousand Oaks, CA: Sage Publications. Fox, J., White, P. J., Macdonald, N., Weber, J., McClure, M., Fidler, S., … Ward, H. (2009). Reductions in HIV transmission risk behaviour following diagnosis of primary HIV infection: a cohort of high-risk men who have sex with men. HIV Medicine, 10, (7), 432–438. doi: 10.1111/j.1468-1293.2009.00708.x Hogg, R. S., Heath, K., Lima, V.D., Nosyk, B., Kanters, S., Wood, E., … Montaner, J. S. G. (2012). Disparities in the Burden of HIV/AIDS in Canada. PLoS ONE, 7, (11), e47260. doi:10.1371/journal.pone.0047260. Marks, G., Crepaz, N., Senterfitt, J. W., & Janssen, R.S. (2005). Meta-analysis of high- risk sexual behavior in persons aware and unaware they are infected with HIV in the United States: implications for HIV prevention programs. Journal of Acquired Immune Deficiency Syndrome, 39, (4), 446-453. Mason, J. 2005. Qualitative Researching. London: Sage Publications Ltd. Timmermans, S., & Berg, M. (2003). The practice of medical technology. Sociology of Health and Illness.25, 97-114. Pierret, J. (2003). The illness experience: state of knowledge and perspectives for research. Sociology of Health & Illness, 25, 4-22. Vallabhaneni, S., McConnell, J. J., Loeb, L., Hartogensis, W., Hecht, F.M., Grant, R.M., & Pilcher, C. D. (2013). Changes in Seroadaptive Practices from before to after Diagnosis of Recent HIV Infection among Men Who Have Sex with Men. PLoS One,8, (2): 1-7. 25

Editor's Notes

  1. Thank you to the organizers of Beyond Behaviours for providing me with this opportunity. I am very glad to be presenting this preliminary analysis alongside the distinguished lineup of speakers today. It is a pleasure to have the chance to report on analysis being conducted by the CIHR Team in the Study of Acute HIV in Gay Men. Among other things, I hope that in my remarks I will be able to spark some thoughts regarding the need to consider the role of medical technologies inproducing new categories of infection and testing protocols in shaping men’s understandings of their health.Today I will present a taste of a our qualitative research with a cohort of HIV-positive gay men in Vancouver who received an acute or recent HIV diagnosis. I would like to acknowledge my coauthors on the forthcoming paper on which this presentation is based.
  2. My presentation today focuses on the use of a new HIV diagnostic technology with gay men in Vancouver, BC. I will start by providing some context around the enhanced testing technology that was introduced as part of our study. I will then briefly review our study methods and then present our analysis of participants’ narratives about discovering their HIV status.In the discussion and conclusion section, I will offer our team’s early reflections on the implications of these findings, and delve into the questions raised by the theme of this conference. In short, I hope to open up discussion for the ways in which analysis of HIV testing must move ‘beyond behaviour’ to consider the contexts in which tests are taken, read and interpreted in the everyday world.
  3. It is clear from estimates by the Public Health Agency of Canada, provincial surveillance statistics and local studies in the Vancouver region that gay, bisexual and other MSM are disproportionately represented in new HIV infections. While I will not review this relevant epidemiological data in my presentation I argue that the largely qualitative data which I present today, works to account for some of the diversity of men who are grouped in this orange line who have received an acute or recent diagnosis.
  4. I first must say something about acute HIV infection. Acute HIV infection corresponds to the first two months of HIV infection, and is a period associated with very high viral loads.The graph illustrates the fluctuation in viral load over time. Notably, viral load peaks in the acute phase, and then naturally drops to significantly lower levels before beginning to increase again. Further, this graph points out the importance of detecting HIV during the early stages of infection due to increased risk of transmission during this stage, which accounts for somewhere between 11-49% of all HIV transmissions.Health Initiative for Men, one of our community partners, has worked to disseminate information on acute infection, including bus ads, posters and online advertisements which underscore that HIV is “hottest at the start”. The argument extends that by diagnosing individuals in active sexual networks earlier, there are both individual and population health benefits.
  5. Our study introduced enhanced HIV testing technology in Vancouver with the purpose of diagnosing men during the acute HIV infection period, which is not detected by standard HIV tests. We worked closely with the labs and clinicians providing the testsprior to implementation. We also worked closely with one of our community partners, the Health Initiative for Men, to educate gay men about this new test. HIM led a campaign under the slogan, “What are you waiting for?” to promote awareness of the NAAT test, which was called “early HIV test”. To date, 25 men who would otherwise have been given an HIV-negative test result were identified in this early stage of infection. They were offered access to enhanced prevention programs, which have been designed in collaboration with gay community organizations and prevention experts, as well as entry into this research study.
  6. Our study began in 2009 and completed enrollment of new study participants in June 2012.This slide provides a snapshot of our mixed-methods study activities. As you can see, we have six quantitative components (consisting of surveys and sexual networking grids) as well as four in-depth qualitative interviews that take place over the course of approximately 1 year.
  7. 25 men were recruited after receiving an acute or recent HIV diagnoses at one of six clinical sites in VancouverAs you saw on the last slide, participants completed self-administered quantitative questionnaires and concurrent qualitative interviews at 4 time points over the yearIt is important to note that our earliest participants were among the first people to receive diagnoses via NAAT technology. There was an learning curve during these first diagnoses which led to modifications in testing & diagnosis protocols.
  8. The majority of our participants lived in Vancouver at the time of study enrollment, identify as gay, are single, over 30, and Caucasian. 12% of our participants are South East Asian and 8% are Hispanic.Most participants are employed full-time, with considerable diversity among those who were not. This includes disability, employment insurance, student, unemployed.Most reported completing college or university and the mean income was between $30,001-$50,000
  9. Participants were motivated to test based on a number of factors.For many participants, their motivations for testing informed their expected result. For example, one participant, who also reported having sex with a known HIV-positive partner expected he would test positive: “And when I got that flu, and then I was so sick, and I barely moved, and actually I went to St. Paul’s [Hospital] because I was burning fever. And I just knew that that was it.”In another case, a participant who routinely tested for HIV said, “I got used to the idea that it’s going to be negative every time.” This participant’s decision to seek testing was based on his usual pattern, and thus he was not expecting anything other than his typical experience.
  10. Most participants received their test results in clinical settings. However, some participants received a phone call asking them to come in to receive their test results. For some participants, this call wasan indicator they tested positive. One participant describes his reaction to receiving a call from a clinician: At that moment I knew something was wrong […] I said, like, you know what? I think I’m positive. Most likely.However, in other cases, participants were not told their results over the phone. One participant received a phone call while on vacation, and was told to come into the clinic upon his return. While he thought this may be because he tested HIV-positive, he later rationalized with his partner that he would have been told immediately if he was HIV-positive. As a result, he continued to have condomless sex with his partner while on vacation. In some cases, clinicians relayed HIV-positive test results via phone. For one participant, this meant he received his HIV-diagnosis and then had to immediately return to work.
  11. Men also highlighted the experience of officially learning of their HIV test results and interacting with health care providers in clinical settings at the time of diagnosis. It is important to note that participants felt very well supported by clinicians, who included ER doctors, primary care physicians, and nurses, at the time they received their diagnosis in clinical settings. Some participants reported being “relieved” once an official diagnosis was given. One man put it this way: “In a way, I felt relieved, because at least I knew and at least the uncertainty was over. So now there was, like, a game plan we could follow to get on with my life”(44 years old, acute HIV infection)This ‘game plan,’ as we will see in the next section of our results, included rapidly starting antiretroviral treatment for this man who received a diagnosis with acute HIV infection.
  12. Participants who received an acute diagnosis (n=13) reflected on how they felt when they were told they were in the acute HIV phase and the extent to which this informed their diagnosis experience. We will highlight results from each of the five interconnected themes: Initial provider and patient uncertainty about HIV test resultsUncertainty about the meaning of acute infectionRelationship to starting treatmentRelationship to having sexRelationship to identity formation as an HIV positive man
  13. In a few cases, participants noted the clinician they were with seemed uncertain about the HIV test results. For example, this participant recounted, “Everything was good until he got to the HIV test and he looked very puzzled because the results were confusing or conflicting and the results came back negative. However, there was uh, one other, blood screen test which is very new, was the early detection. When I met, showed the presence of antibodies, so, he didn’t seem too concerned about it, um, and I wasn’t either cause he was saying that there you know, could be false [positive].” Later that day, this participant received a phone call advising him he may have an early HIV infection.
  14. Participants had varying levels of knowledge about AHI prior to their diagnosis. Some participants looked up information about AHI before or after they were diagnosed. Others recalled information about acute HIV infection from the “Hottest At the Start” campaign. However, some participants remained uncertain about acute HIV infection. A number of participants told us that they were not in the right head space to process information about AHI given to them by a clinician at the time of diagnosis. For example, this participant said, “So I was just worried about getting sick with a flu or something. […] I was just confused, you know. I didn't really know, understand what exactly my stage was, and you know, I was just kind of worried about it.”
  15. Being acutely infected led some participants to seek HIV treatment immediately. In other cases, treatment was initiated by clinicians. For some participants, it was unclear why exactly they started treatment. However, their knowledge of treatment led them to associate the drop in viral load to being on treatment:I think it was because my counts went so high, and my CD4s dropped so low, whether they thought they were going to come back up or not, but they just decided to, say, “Go on it right away.” .
  16. Participants were often told at diagnosis they were highly sexually infectious, or knew this information prior to diagnosis. For many participants, the increased risk of HIV transmission impacted their decisions about sex, with many reporting that they either abstained from sex or limited sex to low(er) risk activities, such as oral sex only. For example, this participant said, “I know how infectious one is in that early stage. So it just definitely just made me completely step back from sex for awhile.”
  17. This participant was one of many to articulate that “being positive is positive.” Participants’ processes of identity formation related to their HIV status were largely not impacted by the acute diagnosis.
  18. Our analysis examined the every day uses of new HIV technologies-in-practice and related testing and diagnosis protocols with gay men. We have shown that new testing protocols have shifted experiences of learning of one’s HIV-positive serostatus and created a new diagnostic category, with varying impact. Participants’ perceptions of uncertainty regarding HIV test results among practitioners emphasizes the important of clinician education about the ways the body responds virologically & immunologically to acute HIV infection. This may also include a discussion of how advances in technology relate to existing practices, such as treatment initiation.It is crucial to provide positive NAAT results to patients in a manner that is both sensitive and timely. Part of the reason we introduced NAAT technology was to diagnose people at an earlier stage in the infection. This is supported by evidence that people who know they are HIV-positive make concerted efforts to reduce the risks associated with onward transmission. Thus, to maximize the value-added of NAAT techonology for individuals & populations, it is important to notify people quickly of positive NAAT results.There are occasions when it makes sense to diagnose an individual over the phone; however, it is important to consider what is happening at the time for the patient. We must also recognize the ways people respond to an HIV diagnosis and take into account the fact that individuals may not absorb information about AHI at that time.We should also make efforts to contextualize an AHI diagnosis within patients’ existing knowledge of testing, treatment and HIV and support their ongoing psychosocial needs.
  19. Theoverarching theoretical literature I am drawing upon today is based on the idea that technologies are relational and impacts the ways people understand their health in multiple ways. In our case, the NAAT test allows us to provide information to people closer to the time they seroconverted, and while they are in the acute HIV phase. It is a technological advance that allows us to identify a previously unrecognized stage of HIV infection.We must examine the impacts of this new technology, and the resulting ‘acute infection’ diagnostic category, on the people who use these services.The introduction of this new technology happens in the context of existing technologies for HIV diagnosis and treatment, and an existing understanding of HIV. By examining our participants’ experiences of these practices, we can learn about processes and structures in the BC context and move beyond individual behavioural analysis.
  20. Theoverarching theoretical literature I am drawing upon today is based on the idea that technologies are relational and impacts the ways people understand their health in multiple ways. In our case, the NAAT test allows us to provide information to people closer to the time they seroconverted, and while they are in the acute HIV phase. It is a technological advance that allows us to identify a previously unrecognized stage of HIV infection.We must examine the impacts of this new technology, and the resulting ‘acute infection’ diagnostic category, on the people who use these services.The introduction of this new technology happens in the context of existing technologies for HIV diagnosis and treatment, and an existing understanding of HIV. By examining our participants’ experiences of these practices, we can learn about processes and structures in the BC context and move beyond individual behavioural analysis.
  21. I would like to acknowledge: OurResearch ParticipantsThe Canadian Institutes of Health Research (CIHR)Health Initiative for Men The CIHR Team in the Study of Acute HIV Infection in Gay Men
  22. As a study team we recognize the the importance of acknowledging the spaces in which research is both conducted and disseminated. This map illustrates the area now known as Greater Vancouver where 10 First Nations are known to have lived on and from the land and water systems before a colonial presence was established. This is both a historical legacy and a significant matter of justice.