Perinatal Care for Women Living with HIV in Ontario

My doctoral research begins from the standpoint of pregnant women and mothers living with HIV in Ontario, Canada and explores the concerns that women living with HIV have as they navigate healthcare during pregnancy, childbirth, and early postpartum. Moving beyond a description or abstracted theorization of women’s experiences, I have used institutional ethnography to explicate how women’s concerns are connected to and organized by ruling relations such as the ideological discourses that underpin the work practices of healthcare providers operating within healthcare institutions. This dissertation follows three “threads” that were discovered in the overall institutional ethnographic inquiry, and that form the basis of three manuscripts. The first thread (Chapter Three) focuses on HIV disclosure, which all women who participated in this research expressed as a concern, and uncovers how the issue of HIV disclosure is accounted for in healthcare providers’ work activities. In this analysis, I show how both the women’s and healthcare provider’s concerns about and actions related to HIV disclosure are connected to discourses such as “fear of contagion” and “AIDS hysteria” that continue to permeate public consciousness. The second thread (Chapter Four) focuses on the discourse of “risk” as organizing women’s experiences and healthcare providers’ work, which became visible through medications women were prescribed, the prenatal clinic appointment schedule women were expected to follow, and the medical interventions that were applied to women’s bodies during childbirth and early postpartum. In a third line of inquiry (Chapter Five), I outline how the current organization of “high-risk” maternity care that is delivered by specialists and is located in regional hospitals has particular implications for women’s pregnancy and motherhood experiences, especially for women who live at a distance from these services and/or find it challenging to attend appointments because of employment and familial responsibilities. This analysis shows how the discourses of “risk” and “safety” are differently known and enacted by women and their healthcare providers, and calls into question the classification of pregnancies of women living with HIV as “high-risk.” In following the three threads and tracking the territory of perinatal care for women living with HIV, I illuminate points of disjuncture between women’s and healthcare providers’ ways of knowing HIV in the context of pregnancy and childbirth, and identify possibilities for how healthcare practices can be augmented to respond to the concerns and challenge that women expressed. In the Conclusion chapter, I draw attention to the tensions between the meta-level ideological discourses of “HIV exceptionalism” and “HIV normalization” that run through Chapters Three, Four, and Five, and that are generalized across the HIV and maternity care services that women living with HIV encounter. I end this dissertation with my thoughts regarding implications for the organization of perinatal care for women living with HIV in Ontario.DissertationDoctor of Philosophy (PhD)In Ontario, the maternity care that women living with HIV receive during pregnancy, childbirth, and early postpartum (also known as the perinatal period) is located in “high-risk” clinical settings within regional, academic teaching hospitals. The organization of such care has important implications for women’s daily lives. This inquiry begins from the personal experiences of pregnant women and mothers living with HIV in Ontario and explores the concerns that women have as they navigate HIV and maternity care during the perinatal period. The inquiry shows how the troubles that women face are produced through institutional conditions and the routine practices of healthcare providers. This dissertation also examines how institutional arrangements related to reducing the risk of HIV to the fetus and infant, and lingering fears about HIV as “contagion,” shape women’s care experiences. Implications for the organization and delivery of perinatal care to women living with HIV is discussed

Issue 1: “It’s Better Late Than Never”: A Community-Based HIV Research and Training Response to Supporting Mothers Living with HIV Who Have Child Welfare Involvement (Part I)

Grounded in community-based research (CBR) principles and an anti-oppression framework, the Positive Parenting Pilot Project (P4) aimed to develop, implement, and evaluate an HIV education and training module to enhance the provision of support for families affected by HIV and who are at risk of or already involved with child protection services. We set out to strengthen the ability of Children’s Aid Societies (CAS) in Ontario to provide anti-oppressive services to families affected by HIV from diverse communities by increasing the capacity of social workers who support these families. Applying the principles of CBR, we increased communication and forged new collaborative relationships within and between CAS agencies, the HIV service sector, parents living with HIV, and researchers in order to better address family needs at societal and structural levels. The goal of this project was to develop, provide, and evaluate a framework for an anti-oppressive education and training module related to the multiple layers of oppression that are experienced by families living with HIV including HIV-related stigma and discrimination, racism, sexism, violence and poverty. This paper presents the qualitative analysis of pre- and post- focus groups with CAS workers who participated in P4 and the emerging practice implications for working with families living with and affected by HIV

A comparison of the MOS-HIV and SF-12v2 for measuring health-related quality of life of men and women living with HIV/AIDS

BACKGROUND: The purpose of this study was to examine the relationship between the Medical Outcomes Study-HIV Health Survey (MOS-HIV) and the SF-12v2 to determine if the latter is adequate to assess the health-related quality of life (HRQoL) of men and women living with HIV/AIDS. 112 men and women living with HIV/AIDS who access care at a tertiary HIV clinic in Hamilton, Ontario were included in this cross-sectional analysis. Correlation coefficients of the MOS-HIV physical and mental health summary scores (PHS and MHS) and the SF-12v2 physical and mental component summary scales (PCS and MCS) were calculated along with common sub-domains of the measures including physical functioning (PF), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SF) and mental health (MH) to explore the relationship between these two HRQoL measures. The sub-domains role physical (RP) and role emotional (RE) of the SF-12v2 were compared separately to the sub-domain role functioning (RF) of the MOS-HIV. Weighted kappa scores were calculated to determine agreement beyond chance between the MOS-HIV and SF-12v2 in assigning a HRQoL state (i.e. low, moderate, good, very good). RESULTS: The MOS-HIV had mean PHS and MHS summary scores of 47.3 (SD = 11.5) and 49.2 (SD = 10.7) respectively. The mean SF-12v2 PCS and MCS scores were 47.7 (SD = 11.0) and 44.0 (SD = 10.4). The MOS-HIV and SF-12v2 physical and mental health summary scores were positively correlated (r = 0.84, p < 0.001 and r = 0.76, p < 0.001). All common sub-domains were significantly correlated at p values from < 0.001 to 0.034. Substantial agreement was observed in assigning a HRQoL state (Physical: κ = 0.788, SE = 0.095; Mental: κ = 0.707, SE = 0.095). CONCLUSIONS: This analysis validates the SF-12v2 for measuring HRQoL in adult men and women living with HIV/AIDS

SBML Level 3: an extensible format for the exchange and reuse of biological models

Abstract Systems biology has experienced dramatic growth in the number, size, and complexity of computational models. To reproduce simulation results and reuse models, researchers must exchange unambiguous model descriptions. We review the latest edition of the Systems Biology Markup Language (SBML), a format designed for this purpose. A community of modelers and software authors developed SBML Level 3 over the past decade. Its modular form consists of a core suited to representing reaction‐based models and packages that extend the core with features suited to other model types including constraint‐based models, reaction‐diffusion models, logical network models, and rule‐based models. The format leverages two decades of SBML and a rich software ecosystem that transformed how systems biologists build and interact with models. More recently, the rise of multiscale models of whole cells and organs, and new data sources such as single‐cell measurements and live imaging, has precipitated new ways of integrating data with models. We provide our perspectives on the challenges presented by these developments and how SBML Level 3 provides the foundation needed to support this evolution

SBML Level 3: an extensible format for the exchange and reuse of biological models

Systems biology has experienced dramatic growth in the number, size, and complexity of computational models. To reproduce simulation results and reuse models, researchers must exchange unambiguous model descriptions. We review the latest edition of the Systems Biology Markup Language (SBML), a format designed for this purpose. A community of modelers and software authors developed SBML Level 3 over the past decade. Its modular form consists of a core suited to representing reaction-based models and packages that extend the core with features suited to other model types including constraint-based models, reaction-diffusion models, logical network models, and rule-based models. The format leverages two decades of SBML and a rich software ecosystem that transformed how systems biologists build and interact with models. More recently, the rise of multiscale models of whole cells and organs, and new data sources such as single-cell measurements and live imaging, has precipitated new ways of integrating data with models. We provide our perspectives on the challenges presented by these developments and how SBML Level 3 provides the foundation needed to support this evolution

SBML Level 3: an extensible format for the exchange and reuse of biological models

Systems biology has experienced dramatic growth in the number, size, and complexity of computational models. To reproduce simulation results and reuse models, researchers must exchange unambiguous model descriptions. We review the latest edition of the Systems Biology Markup Language (SBML), a format designed for this purpose. A community of modelers and software authors developed SBML Level 3 over the past decade. Its modular form consists of a core suited to representing reaction-based models and packages that extend the core with features suited to other model types including constraint-based models, reaction-diffusion models, logical network models, and rule-based models. The format leverages two decades of SBML and a rich software ecosystem that transformed how systems biologists build and interact with models. More recently, the rise of multiscale models of whole cells and organs, and new data sources such as single-cell measurements and live imaging, has precipitated new ways of integrating data with models. We provide our perspectives on the challenges presented by these developments and how SBML Level 3 provides the foundation needed to support this evolution.journal articl

Exploring the Relationship between HSV-2/HIV Co-Infection and Health-Related Quality of Life of Adult HIV-Positive Women: A Mixed Methods Study

Background: The life-time prevalence ofHSV-2 is higher in people infected with HIV/AIDS compared to the general population. Little is known about the experiences of women living with these two chronic sexually transmitted viral infections (STVIs), for example, whether HSV-21 HIV co-infection complicates women's experiences and influences their perceived health-related quality of life (HRQoL). The degree to which HSV-2/HIV co-infection changes perceived physical and mental HRQoL ofHIV-positive women when taking into account other factors related to HRQoL including the degree of immunosuppression, demographic characteristics, and co-existent psychological issues is not known. It has not been investigated whether these two chronic STVIs create additional challenges in social and sexual relationships for women. It is also not understood if body image or self-esteem are complicated by HSV-2IHIV co-infection, as well as how women perceive and experience disclosure in relationships and stigma. No quantitative or qualitative studies have explored these phenomena in a Canadian HIVpositive female population. Methods: This mixed methods study explored the association between HIVI HSV-2 coinfection and physical and mental HRQoL of adult HIV -positive women. A sequential exploratory model was utilized, which involved collecting qualitative data after a quantitative phase. In the first quantitative phase, a cross-sectional questionnaire was administered, HSV -2 sero-status was determined and clinical correlates and HRQoL scores were analyzed using multivariable methods. The second qualitative phase was conducted to further explain the quantitative findings; participants' views of the relationship between symptomatic HSV-2 and HIV co-infection and HRQoL were explored. The qualitative phase employed an interpretive phenomenological philosophy and methodology. Quantitative Findings: Although women's HRQoL scores on general and HIV-specific measures differed depending on their HSV-2 sero-status, place of origin, receipt of antiretroviral therapy, etc., HSV-2/HIV co-infected women did not have significantly different HRQoL scores compared to women infected with HIV alone. This conclusion was drawn on the basis of only fair goodness-of-fit of the linear regression models. HSV -2 sero-positivity predicting a better perceived physical and mental HRQoL was also considered biologically implausible and divergent with the literature. Qualitative Findings: The participant narratives highlighted the meaning that women ascribe to living with HIV and HSV-2 in relationship to their perceived HRQoL. HIV was something that affected their global physical and mental HRQoL; it was associated with a social and historical context and was mapped onto their life trajectories. HSV-2, on the other hand, was an immediate concern experienced on an episodic basis, and was more relevant to dimensions of HRQoL such as day-to-day physical and social functioning, as well as intimacy and relationships with partners. HSV-2 infection was a separate, dominant and gendered medical condition that compounded and complicated women's experiences with HIV. Main implication: HRQoL assessments from the perspective of patients will become increasingly important as life-prolonging antiretroviral treatments are refined and clinicians and HIV -positive individuals look to maximize quality oflife and well-being. As people living with HIV I AIDS continue to face complex health-related challenges, it is essential to incorporate HRQoL into treatment and care planning. It is important for service providers to account for HSV -2 as an important medical and psychosocial issue and to discuss with their clients how HSV -2 may affect perceived HRQoL. This study adds to the body of knowledge regarding women's experiences living with HN, but adds an important layer regarding co-infections and co-morbidities, which are relevant to developing an understanding of women's sexual health.Master of Science (MSc