Problems and Purpose:

The purpose of the study was to engage patients and care providers in the province of Quebec to address the needs of women in the area living with HIV. Care services did not previously meet the needs of women and the objective of the study was to recommend and codesign plans to improve care for the target population. [1]

Background History and Context:

When HIV was officially named by the CDC in 1982, HIV care was mainly focused on palliative care and treating infections. In the 1990’s, care transitioned towards HIV specialists using antiretroviral therapy. Now, HIV is considered manageable with the right medications and treatments. HIV patients used to be composed mainly of men having sexual interactions with other men, but infection rates among women have nearly doubled since 1999. In Canada in 2018, women accounted for 23% of the HIV positive population. However, research identifies that despite the shift in affected population, care has not adapted to meet the needs of women living with HIV. Women living with HIV believe that their care is inadequate and that providers have an increased lack of understanding of care surrounding HIV. They also emphasize that there is still stigma surrounding HIV. [1]

Organizing, Supporting, and Funding Entities:

Organizing, facilitating and funding was completed by Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) networks. The principal investigators of the study include Mona Loufty of the Women’s College Research Institute, ON, Alexandra de Pokomany of McGill University Health Centre, QC, Angela Kaida of Simon Fraser University, BC, Sharon Bruce of the University of Manitoba, Marissa Becker of the University of Manitoba and Saara Greene of McMaster University. 

Participant Recruitment and Selection:

Participants were selected by a “purposive maximum-variation sampling strategy.” [1] This strategy helped to ensure a diverse range of participants in age, gender, sexual orientation and other categories. Participants were selected from existing CHIWOS patient data. Patients who had previously indicated they would be willing to participate in further research were contacted. Participants included patients and HIV care providers. Care providers were recruited first and their names were released in order to allow patients to decide if “they felt comfortable participating” in a deliberative dialogue with certain care providers. [1] All participants were offered a $100 incentive to participate. [1]

Methods and Tools Used:

A deliberative dialogue workshop ( https://participedia.net/method/5179 ) was used. Deliberation ( https://participedia.net/method/560 ) is a form of interaction among participants. The dialogue consisted of small and large group discussions facilitated by a professional moderator. [1] 

What Went On: Process, Interaction, and Participation:

The workshop was conducted over 5 hours in an afternoon and was facilitated by a moderator. The workshop consisted of both small and large group discussions. Eight patients and 8 care providers reviewed previous research and discussed possible care improvements. They also discussed what specific changes could be made in order to make these improvements a reality. The participants identified care improvements such as creating a comprehensive women's healthcare guide, lowering the cost of HIV-required medications, lowering the stigma surrounding HIV and having contraceptive counseling and other HIV-related care delivered by nurses. The format of deliberative dialogue allowed participants to be informed of the research surrounding the problem and allowed them to formulate the best possible solutions. [1]

Influence, Outcomes, and Effects:

Participants in the dialogue were able to make recommendations on HIV-related care for women living in Quebec. The participants identified care improvements such as creating a comprehensive women's healthcare guide, lowering the cost of HIV-required medications, lowering the stigma surrounding HIV and having contraceptive counseling and other HIV-related care delivered by nurses. These recommendations can be used to better inform the target population, along with policy makers and stakeholders. Patients left the dialogue feeling better informed on care solutions, along with an increased sense of purpose. Providers left the dialogue better informed of the feelings of women living with HIV, and their concerns facing the issue at hand. [1]

Analysis and Lessons Learned:

The method of deliberative dialogue proved to be effective in creating stakeholder recommendations surrounding care for women living with HIV in Quebec. The small and large group discussions fostered informative and productive dialogue that were helpful in configuring possible solutions to the problem at hand of a lack of care for women living with HIV in Canada. The experiences of both providers and patients alike were informative on finding solutions to gaps in care. [1]

References:

[1] O’Brien, N., Law, S., Proulx-Boucher, K., Ménard, B., Skerritt, L., Boucoiran, I., Cox, J., Andersson, N., & Pokomandy, A. de. (2020, April 1). Codesigning care improvements for women living with HIV: A patient-oriented deliberative dialogue workshop in Montréal, Quebec. CMAJ Open. Retrieved October 29, 2021, from https://www.cmajopen.ca/content/8/2/E264.full . 

External Links:

http://www.chiwos.ca/home/?doing_wp_cron=1632458963.3507568836212158203125&lang=en 

Notes

The first version of this case entry was written by Hayley Cormican, a Master of Public Service candidate at the University of Arkansas Clinton School of Public Service, and then edited. The views expressed in the entry are those of the authors, editors, or cited sources, and are not necessarily those of the University of Arkansas Clinton School of Public Service.