1. The Anatomy of a Project:
Exploring the Impact of the Body and Gender on
Adherence Practices and Beliefs Relating to HAART
Among MSM and Other Vulnerable Populations
Treena Orchard, Arn Schilder, Warren
Michelow, Kate Salters, David Moore, and Bob
Hogg
Gay Men‟s Health Summit
November 4, 2011

2. Overview of presentation
• Dominant approaches to HAART adherence
• Some existing challenges and gaps in research
and service delivery
• Taking a different approach
conceptually, methodologically, and
theoretically
• Outcomes and implications of this new
“anatomy of adherence” approach

3. Dominant approaches to HAART
adherence within biomedical research
• Following prescribed medical advice
• Focus on individual behaviour and psycho-social
determinants of health
• Value and merit attached to HAART adherence:
▫ “Good” adherence is taking 95% of medical doses
▫ “Bad” adherence or non-compliance often
understood as a negative behaviour linked with
poor decision-making and/or chaotic lives

4. Dominant methodological approaches
• Quantitative measures
▫ Prescription fills; pill counts of returned medication;
electronic monitoring devices; DOT
• Population-specific initiatives
▫ E.g. drug-users, sex workers, MSM
• Epidemiological-driven
▫ Survey instruments, self-reporting
• “Seek, test, treat, and retain”
▫ Treatment as prevention

5. Challenges and gaps in dominant
research and service delivery
• Emphasis on clinical markers
▫ Based on male body and physiological responses to disease and
medicines
▫ Focus on micro-level (individual behaviour)
• Focus on quantitative data and research
▫ Quantitative data may fail to recognize structural factors in
producing adherence and non-adherence
▫ There is a need for in-depth, qualitative research in order to
capture the array of issues inextricably linked to adherence

6. Challenges and gaps, continued
• Participatory research is needed to explore adherence
▫ Service providers and community partners often not included in
studies and are key to better understanding the barriers and
opportunities for adherence to HAART
▫ Need to refine population-specific approach to capture inter-
group variation
• Lack of consideration of the interaction of multiple
factors
▫ Little consideration of gender and the body beyond the
biomedical model, particularly among MSM

7. Anatomy of Adherence:
Objectives and rationale
• Pilot study (1 yr) funded by CIHR
• We want to understand how gender and people‟s ideas about
their bodies structure adherence practices relating to HAART
among HIV+ poly-substance users in Vancouver
• Primary focus is MSM, however, for a richer understanding of
the diverse effects of gender and the body on adherence we
also include women and transgender people
• Recognizing the importance of understanding “all” sides of
the equation, we also include the experiences of providers and
community partners who also struggle to find ways to
increase and better support adherence

8. Anatomy of Adherence:
Why gender?
• Gender is not binary, but exists along a continuum, which is
essential to recognize to better understand differential rates of
adherence across and within different groups of people
▫ E.g., what makes it harder/different/easier for men to adhere more
regularly than women?
▫ E.g., how does this compare with the experiences of MTF and FTM
participants?
▫ E.g., what about service provision and the gender of providers who may
work with diverse populations whose lives, experiences, and health-
related decisions they may not always fully understand or support
 Especially in the case of poly-substance users
• We need to better understanding how bodies are gendered and
respond to both disease progression and treatment regimes
differently

9. Anatomy of Adherence:
Why the body?
• As the prime medium through which we move through the
world, in sickness and in health, gaining insight about how
people think about, use, and sometimes neglect their bodies is
critical
• People‟s experiences of taking meds impact physiology but
they are also “read”, resisted, and renegotiated through the
body at the physical, emotional, and socio-political level
• The effects of meds. and HIV/AIDS are often marked on the
body in problematic and embarrassing ways
▫ People typically want to be well, but not always if their bodies can
be read as diseased and undesirable by others, and themselves

10. Anatomy of Adherence:
Conceptually and theoretically
• Drawing from medical anthropological
examinations of medicine and practices like
taking and classifying pills as cultural systems
• Attentive to how such systems are
produced, situational, diverse within and across
groups of people, and are processual
• Focus on the intersectional relationships
between factors at the structural and everyday
levels

11. Theoretical Perspective:
Intersectionality
• To study the relationships between different
subjectivities and culturally constructed categories
(i.e., gender, race, sexuality, power)
• These subjectivities and categories are situational
and temporally dependent, are shifting, and interact
on multiple levels
• How do these systems of meanings and experiences
work to produce inequalities of various kinds?

12. Theoretical Perspective:
Strengths of intersectionality
• Issues of diversity and „difference‟ are at the fore
• Extends previous models that focus more on
traditional binary systems
• E.g. compliance vs. non-compliance, male vs. female,
and ideas about non-adherence being interpreted
solely as resistance or lack of understanding
• Can lead to greater theoretical sophistication and new
methodological possibilities
• Greater attention paid to the processual, shifting
nature of people‟s lives, behaviours, and thoughts

13. Anatomy of Adherence:
The concept of health work
• Examines the complicated processes involved with
how HIV-positive people negotiate taking their
meds. and how, much like other decisions, they are
mediated through:
▫ Particular life circumstances of people
▫ The relationships between people and larger structural
factors, including medical/health care systems
• Particularly useful when trying to understand the
emotional, physical, and mental work involved in
not just taking pills but managing health
▫ Often described as “a full-time job”

14. Anatomy of Adherence:
Methodology
• Qualitative, semi-structured interviews with HIV-
positive participants (n=30)
▫ 10 MSM, 10 transgender people, 10 women
▫ $40.00/interview
• Qualitative, semi-structured interviews with service
providers (n=10)
▫ Pharmacists, HIV physicians, street nurses, home care
workers
• Body mapping with HIV-positive participants (n=30)
▫ 10 MSM, 10 transgender people, 10 women
▫ $40.00/body map

15. Anatomy of Adherence:
A word about body mapping
• After discussion between participants and researchers a working list
of topics emerge (i.e., side-effects of meds., sexuality, what the
meds. do inside the body, stresses or achievements)
• Participants trace their bodily outline and using various art supplies
they relate, share, create, or resist these experiences through
mapping them onto/through their body maps
• Can be used as a therapeutic tool, as advocacy, and to tell people‟s
stories
• Also a powerful medium through which people can contest some of
the biological definitions and social values that are connected to
their bodies (i.e., “living with HIV”, diseased, unproductive) to
better reflect and represent their “real” lives, struggles, ideas, and
creativity

18. Outcomes and implications of this new
“anatomy of adherence” approach
• How and if gender and people‟s ideas about the body affect how they
make decisions about taking HAART
• The discrepancies, parallels, and challenges between patient and
provider approaches to understanding adherence and what to do
about these data
• More nuanced understandings of these critical issues can inform
program development
• These findings will provide insight into the relationships between
medications and behaviour
• They will also shed light on how people‟s decisions and relationships
to their medications differ based on bodily and gendered localities
▫ Within this, these data may also extend our ideas about what it means to
be healthy, ill, and how medications mediate these states of being

19. Acknowledgements
• The A of A team
• Community Partners
• BC Centre for Excellence in HIV/AIDS
• The University of Western Ontario
• CIHR