When

Our annual Community Advisory Board took place virtually on Friday March 4^th 2022 from 11:00am-12:15pm

Who

We were so grateful to have community partners joining us and providing some very useful insight and feedback. We’d like to extend a special thank you to Elder Sheila for opening and closing our meeting in a good way by honouring the ancestors who have cared for the beautiful, traditional, ancestral and unceded Coast Salish territories where we live and learn!

Study Updates

• We welcomed two new members to the team: Charity Mudhikwa and Vy Manohara
• We said “see you later” to two valued members: Becky Gormley and Sofie Levy
• Recruitment Update: As of March 4^th 2022, we had 238 participants recruited out of a target of 700
• We discussed the need for more efforts to recruit young women living with HIV (age 16-30), menopausal women, African, Caribbean and Black women, Indigenous women not living with HIV, Transgender women and women who acquired HIV peri-natally.
• Outreach update: We have been contacting previous CARMA and CHIWOS participants, taking posters to various clinics and centres and increasing engagement through our website and social media platforms.

Preliminary Findings

Some of our fantastic trainees presented some of their preliminary findings

1. 1. Why study menopause for women living with HIV? : Dr. Elizabeth King, postdoc

Dr. King found that psychosocial factors, like substance use and depression, were strongly associated with menopausal symptoms. She also found that women with HIV are less likely to be treated for menopausal symptoms with hormone therapy. These findings are important because many studies have found that women living with HIV have heightened menopausal symptoms compared to the general population, however psychosocial factors and treatment rates have not been accounted for. BCC3 will be the first study that incorporates menopausal clinical data with treatment and psychosocial data in order to truly assess whether symptoms are more severe in this group.

2. 2. Do women living with HIV have earlier age of menopause? : Shayda Swann, PhD student

Previous research suggests that women living with HIV go through menopause earlier than women without HIV. However, few of these studies looked at hormone levels to determine if women were truly in menopause. In BCC3, we are using both self-report and hormonal data to determine the age at which women living with and without HIV go through menopause. So far, our data suggest that women go through menopause at similar ages, regardless of HIV status

3. 3. How prevalent is the experience of chronic pain among women living with HIV? : Tetiana Povshedna, PhD student

In the BCC3 chronic pain survey, we explore pain prevalence, location, intensity, interference with everyday life, coping abilities of women, medication/substance use related to pain, interference with sleep, and pain-related stigma. Our preliminary analysis indicated WLWH were more likely to have chronic pain compared to controls (41% vs 23%). We observed that both groups appear to show substantial coping abilities despite high pain intensity and interference. Additionally, the experience of chronic pain among WLWH in their 40s may be similar to the experience of chronic pain among controls in their 60s. We are looking forward to further analysis of chronic pain and its characteristics following the BCC3 enrollment advancement to learn more about chronic pain among WLWH

 

Question and Answer Period

1. Do we have any idea on what the sources are of pain?

Answer: Locations of pain are different for WLWH and controls. When women report chronic pain they report it at multiple locations at once and also report widespread pain.

2. In our analyses, we should highlight links of menopause and chronic pain, links for trauma and PTSD, and with sexual orientation. What about LGBTQ2S+ experiences?

Answer: Agreed! We plan to see how different factors intersect to affect women’s healthy aging.

3. Could a study exploring menopausal WLWH’s experiences on hormonal therapy be on the horizon?

Answer: Yes, there is a lack of this in HIV research and not much data on it so providers are hesitant on prescribing hormonal therapy. We capture some of this data and plan to look into it in our analyses.

4. Are you looking at alleviation of pain for people that are starting to go through menopause who have experienced a lifetime of endometriosis? And is a history of sexual violence also being considered?

Answer: Yes, we are collecting a lot of psychosocial data including experiences of violence

5. Is this information linked with hospitalization data?

Answer: Not right now, but it is in the consent forms that at some point in the future we will link to these larger databases.

6. Do we already have data showing that women living with HIV have a greater experience of violence than those who are not living with HIV?

Answer: We can analyze that question from BCC3 data, and it is also quite clear from other datasets that WLWH experience a much higher prevalence of violence in adulthood than women not living with HIV.

 

PRA Panel: Experience & Leadership

Our Peer Research Associates have completed over 200 surveys to date! Here are some of the reflections they shared:

• We collaborate, learn, and continue to learn from each other. We all bring different perspectives, which is a very important part of our collaborative learning process.
• Due to COVID restrictions, ongoing training has been designed, developed, and adapted as needed. In Summer 2020, we started with virtual biweekly training on ethics, TCPS-2, how to obtain informed consent, research methods, how to facilitate community visits, and how to use the REDCap database.
• Since then, we have been meeting monthly to discuss various aspects of conducting visits and to continue training as needed
• We are planning on doing community visits in person, learning how to conduct clinical visits, practice writing and presentations, and begin learning about data coding and analyses.
• We have developed really great friendships through this process, within the PRA team and with coordinators, students, and investigators
• We have had a very diverse and vast look at women’s experiences, both those living with HIV and living without. We have also seen how this is an excellent opportunity for women not living with HIV to contribute to women’s research and to have a clinical health check!
• Hearing about women’s experiences of HIV stigma, sexism, and racism has been truly insightful on multiple levels. Experiences are intertwined and definitely affecting women’s health

 

Opportunities for Collaboration

We shared examples of knowledge translation/exchange (KTE) activities we are working on with partner organizations

• UBC Partnership Recognition Fund with Vancouver Friend’s for Life
  • We planned a Ladies Tea Party and Research Gathering for March 10^th at Friend’s for Life to share and discuss our new videos
• Community Universally Engagement Support Fund with AIDS Vancouver
  • We are applying to funding to host arts-based KTE events focused on women’s sexual and reproductive health
• If CAB Members are interested in partnering for similar KTE events, please reach out and we would love to collaborate!