Treena Orchard, "The Anatomy of a Project: the Impact of the Body and Gender on Adherence"


Published on

Published in: Health & Medicine
  • Be the first to comment

  • Be the first to like this

No Downloads
Total views
On SlideShare
From Embeds
Number of Embeds
Embeds 0
No embeds

No notes for slide
  • Exploring the intersection of gender, the body, living with HIV, and being a drug user can only be properly explored with qualitative data
  • I.e., women’s CD4 counts are typically higher than men’s for longer periods of time + this means that in some cases women may be living with HIV longer than men by the time they are eligible for treatment
  • Can lead to greater theoretical sophistication and new methodological possibilitiesE.g. combining qualitative and quantitative approaches to capture and more complex, and representative information
  • Treena Orchard, "The Anatomy of a Project: the Impact of the Body and Gender on Adherence"

    1. 1. The Anatomy of a Project:Exploring the Impact of the Body and Gender onAdherence Practices and Beliefs Relating to HAARTAmong 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. 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. 3. Dominant approaches to HAARTadherence 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. 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. 5. Challenges and gaps in dominantresearch 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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
    16. 16. 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
    17. 17. Acknowledgements• The A of A team• Community Partners• BC Centre for Excellence in HIV/AIDS• The University of Western Ontario• CIHR