Experiences and resultant care gaps among women with HIV in Canada: concept mapping the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) findings

Priscilla Medeiros; Jill Koebel; Amy Yu; Mina Kazemi; Valerie Nicholson; Peggy Frank; Yasmeen Persad; Nadia O'Brien; Breklyn Bertozzi; Stephanie Smith; Mary Ndung'u; Annette Fraleigh; Brenda Gagnier; Claudette Cardinal; Kath Webster; Margarite Sanchez; Melanie Lee; A Lacombe-Duncan; Carmen H Logie; Rebecca Gormley; Alexandra de Pokomandy; Angela Kaida; Mona R Loutfy

doi:10.1136/bmjopen-2023-078833

Experiences and resultant care gaps among women with HIV in Canada: concept mapping the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) findings

BMJ Open. 2024 Apr 3;14(4):e078833. doi: 10.1136/bmjopen-2023-078833.

Authors

Priscilla Medeiros^{1

2}, Jill Koebel³, Amy Yu³, Mina Kazemi^{3

4}, Valerie Nicholson^{5

6}, Peggy Frank⁵, Yasmeen Persad³, Nadia O'Brien^{7

8}, Breklyn Bertozzi³, Stephanie Smith³, Mary Ndung'u³, Annette Fraleigh³, Brenda Gagnier³, Claudette Cardinal^{5

9}, Kath Webster⁵, Margarite Sanchez⁵, Melanie Lee⁵, A Lacombe-Duncan¹⁰, Carmen H Logie^{11

12}, Rebecca Gormley⁵, Alexandra de Pokomandy¹³, Angela Kaida⁵, Mona R Loutfy¹⁴

Affiliations

¹ Women's College Hospital, Toronto, Ontario, Canada priscilla.medeiros@sickkids.ca.
² Edwin S.H. Leong Centre for Healthy Children, University of Toronto, Toronto, Ontario, Canada.
³ Women's College Hospital, Toronto, Ontario, Canada.
⁴ School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA.
⁵ Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.
⁶ Epidemiology and Population Health, BC Centre for Excellence in HIV/AIDS, Vancouver, British Columbia, Canada.
⁷ Department of Family Medicine, McGill University, Montreal, Quebec, Canada.
⁸ McGill University Health Centre, Montreal, Quebec, Canada.
⁹ British Columbia Centre for Excellence in HIV/AIDS, Vancouver, British Columbia, Canada.
¹⁰ School of Social Work, University of Michigan, Ann Arbor, Michigan, USA.
¹¹ Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Ontario, Canada.
¹² Women's College Research Institute, University of Toronto, Toronto, Ontario, Canada.
¹³ Chronic Viral Illness Service, McGill University Health Centre, Montreal, Quebec, Canada.
¹⁴ Medicine, University of Toronto, Toronto, Ontario, Canada.

Abstract

Objectives: The community-based, longitudinal, Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) explored the experiences of women with HIV in Canada over the past decade. CHIWOS' high-impact publications document significant gaps in the provision of healthcare to women with HIV. We used concept mapping to analyse and present a summary of CHIWOS findings on women's experiences navigating these gaps.

Design: Concept mapping procedures were performed in two steps between June 2019 and March 2021. First, two reviewers (AY and PM) independently reviewed CHIWOS manuscripts and conference abstracts written before 1 August 2019 to identify main themes and generate individual concept maps. Next, the preliminary results were presented to national experts, including women with HIV, to consolidate findings into visuals summarising the experiences and care gaps of women with HIV in CHIWOS.

Setting: British Columbia, Ontario and Quebec, Canada.

Participants: A total of 18 individual CHIWOS team members participated in this study including six lead investigators of CHIWOS and 12 community researchers.

Results: Overall, a total of 60 peer-reviewed manuscripts and conference abstracts met the inclusion criteria. Using concept mapping, themes were generated and structured through online meetings. In total, six composite concept maps were co-developed: quality of life, HIV care, psychosocial and mental health, sexual health, reproductive health, and trans women's health. Two summary diagrams were created encompassing the concept map themes, one for all women and one specific to trans women with HIV. Through our analysis, resilience, social support, positive healthy actions and women-centred HIV care were highlighted as strengths leading to well-being for women with HIV.

Conclusions: Concept mapping resulted in a composite summary of 60 peer-reviewed CHIWOS publications. This activity allows for priority setting to optimise care and well-being for women with HIV.

Keywords: HIV & AIDS; Health Equity; Patient-Centered Care; Quality in health care.

MeSH terms

Canada
Cohort Studies
Female
HIV Infections* / psychology
HIV Infections* / therapy
Humans
Ontario
Quality of Life
Reproductive Health*
Women's Health