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
Carmen H Logie,
Stephanie Smith,
Mina Kazemi,
Brenda Gagnier,
Melanie Lee,
Angela Kaida,
Valerie Nicholson,
Rebecca Gormley,
Alexandra de Pokomandy,
Yasmeen Persad,
Mona R Loutfy,
Amy Yu,
Priscilla Medeiros,
Jill Koebel,
Peggy Frank,
Nadia O'Brien,
Breklyn Bertozzi,
Mary Ndung'u,
Annette Fraleigh,
Claudette Cardinal,
Kath Webster,
Margarite Sanchez,
A Lacombe-Duncan
Affiliations
Carmen H Logie
Women`s College Research Institute, University of Toronto, Toronto, Ontario, Canada
Stephanie Smith
Women`s College Hospital, Toronto, Ontario, Canada
Mina Kazemi
Women`s College Hospital, Toronto, Ontario, Canada
Brenda Gagnier
Women`s College Hospital, Toronto, Ontario, Canada
Melanie Lee
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Angela Kaida
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Valerie Nicholson
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Rebecca Gormley
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Alexandra de Pokomandy
Chronic Viral Illness Service, McGill University Health Centre, Montreal, Quebec, Canada
Yasmeen Persad
Women`s College Hospital, Toronto, Ontario, Canada
Mona R Loutfy
Medicine, University of Toronto, Toronto, Ontario, Canada
Amy Yu
Women`s College Hospital, Toronto, Ontario, Canada
Priscilla Medeiros
Women`s College Hospital, Toronto, Ontario, Canada
Jill Koebel
Women`s College Hospital, Toronto, Ontario, Canada
Peggy Frank
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Nadia O'Brien
Department of Family Medicine, McGill University, Montreal, Quebec, Canada
Breklyn Bertozzi
Women`s College Hospital, Toronto, Ontario, Canada
Mary Ndung'u
Women`s College Hospital, Toronto, Ontario, Canada
Annette Fraleigh
Women`s College Hospital, Toronto, Ontario, Canada
Claudette Cardinal
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Kath Webster
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
Margarite Sanchez
Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
A Lacombe-Duncan
School of Social Work, University of Michigan, Ann Arbor, Michigan, USA
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.
