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 HoggGay Men’s Health SummitNovember 4, 2011

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

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

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

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

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

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

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

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

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

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?

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

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”

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

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

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

Acknowledgements

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