O’Brien, Nadia (2020). Co-designing care: Engaging patients and providers to improve comprehensive primary care for women living with HIV in Canada. McGill Family Medicine Studies Online, 15:e05

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Abstract

BACKGROUND

Two concomitant shifts in HIV care, the transition of HIV to a manageable chronic disease and an increase in the proportion of women living with HIV in Canada, require healthcare delivery to adapt to women’s comprehensive care needs. In addition to HIV-specific care, comprehensive care for women living with HIV includes sexual and reproductive care, routine screenings, and co-morbidity management along their life course. Yet, current health services have not sufficiently adapted, resulting in unmet care needs, gendered health inequities, and uncertainty regarding what strategies may best address contemporary realities of HIV care. Working with patients and providers, the purpose of this doctoral thesis was to understand gaps in care and co-design strategies to ameliorate access to comprehensive primary care for women living with HIV in Canada.

OBJECTIVES

1)Garner women’s vision of a women-centred HIV care approach by identifying gaps in care and potential solutions.

2)Identify and describe gaps in comprehensive care and assess whether care gaps differ across a typology of care.

3)Determine the features of care that facilitate access to comprehensive care for women living with HIV.

4)Co-design recommendations with patients and providers to improve comprehensive care for women living with HIV.

METHODOLOGY

I adopted a multiphase convergent mixed methods research design, guided by a participatory research approach.

METHODS AND RESULTS

Objective 1: Women living with HIV (n=77) in 11 focus groups across Canada envisioned central characteristics of a women-centred HIV care model, including (i) basic care competencies; (ii) patient-centred care principles; (iii) coordinated and integrated care; (iv) care that responds to structural barriers that limit women’s access to care; and (v) care that fosters peer support and peer leadership in its design and delivery.Objective 2: Among participants from the largest Canadian cohort of women living with HIV (n=1422), 56.4% (657/1164) of women currently accessing HIV care experienced at least one gap in comprehensive care. Women accessing care from medical specialists in non-HIV clinics had higher odds of not having discussed the importance of Pap tests (AOR 1.51, 95% CI 1.01-2.26), while women accessing care from family doctors in non-HIV clinics had higher odds of not receiving antiretroviral therapy (AOR 1.99, 95% CI 1.12-3.53), indicating areas for targeted improvements. Objective 3: We conducted a systematic literature review, screening 3,466 records and retaining 44 articles from 2000-2017. Features of care found to facilitate access to comprehensive care were qualitatively synthesized across three levels of the healthcare system. These included care provider features (i.e., availability of peer support, case managers and/or nurse navigators), clinical care environments (i.e., appointment reminder systems, and coordination of care), and social and institutional factors (i.e., healthcare insurance, dispelling HIV-related stigma). Objective 4: A deliberative dialogue with patients and providers (n=16) yielded evidence-based, stakeholder-driven recommendations to improve the comprehensive care of women living with HIV in Quebec. Recommendations included: i) delegating medical acts; ii) greater involvement of HIV community; iii) complete financial coverage of antiretroviral therapy; and, iv) population-wide campaigns to increase awareness of HIV advances.

DISCUSSION and CONCLUSION

This thesis contributes timely findings towards ensuring women living with HIV have access to comprehensive care in the chronic disease era of HIV care. Collectively, this work improves our understanding of women’s experiences of care influenced by both health system and social structural factors, which enable or hinder their ability to access care. These findings are strengthened by the triangulation of qualitative and quantitative findings and the engagement of patients and providers