Adapting Cognitive Remediation Group Therapy Online: Focus Groups with People Aging with HIV.

Cognitive health is a significant concern for people aging with HIV/AIDS. Psychosocial group therapies may help people aging with HIV who experience cognitive challenges cope with their symptoms. The COVID-19 pandemic revealed in-person group therapies need adaptation for technology-mediated delivery. Peer-led focus groups discussed adapting cognitive remediation group therapy (CRGT) as an online intervention. CRGT combines mindfulness-based stress reduction and brain training activities. Purposive sampling recruited people aging with HIV (40+) who self-identified cognitive concerns and resided in one of two Canadian provinces. Thematic content analysis was employed on transcripts by seven independent coders. Ten, 2-hour focus groups were conducted between August and November 2022. Participants (n=45) responded favorably to CRGT's modalities. Alongside support for its continued implementation in-person, participants requested online synchronous and online asynchronous formats. Preferred intervention facilitators were peers and mental health professionals. We also discuss how to adapt psychosocial HIV therapies for technology-mediated delivery.

Changing an in-person support group about cognitive health to an online support group via focus group consultations with middle-aged and older adults living with HIV/AIDSCognitive health concerns are common for people living with HIV as they grow older. Support groups may help individuals make connections with each other and develop ways to manage symptoms of cognitive impairment. In-person support groups need to have online adaptations for many reasons, including access for rural and remote communities. We conducted ten focus groups, led by people living with HIV, to discuss how to change an in-person support group to be online. The support group uses mindfulness and brain training activities. Forty-five people over age 40+ who are living with HIV in Ontario and Saskatchewan, Canada, and concerned about cognitive health participated in these focus groups. Seven researchers analysed the focus group transcripts. Participants liked the idea of the support group, both in-person and online. They specifically requested two forms of an online support group: synchronous, where everyone attends together at the same time, and asynchronous, where people attend at different times. This paper discusses how to change other in-person counselling and support group options for HIV to online formats.

Meaningful inclusion of people living with HIV as a model for workplace policies: Key findings from the project PEER study.

BACKGROUND: As a large number of people live with HIV, it is worthwhile to examine the integration of this group in the workplace. OBJECTIVE: To investigate how the operationalization of GIPA/MEPA supports workplace policies and practices for PLHIV. The study aims to explore what is being offered to support PLHIV in community-based agencies and what can be done to enhance the offerings. METHODS: For this community-based research, 2 bilingual online surveys were sent to 150 Canadian organizations that work closely with PLHIV or offer support to them. One of the surveys was for Executive Directors of these organizations while the other was sent to peers; i.e. PLHIV whose job is to offer services to PLHIV. Questions in the surveys varied between open-ended, binary, and Likert. RESULTS: GIPA/MEPA are implemented in most organizations and Executive Directors affirmed that PLHIV and their impacts on the workplace are valued. There is a consensus among Executive Directors that formal support is provided but most respondents argued that this support is not specific for PLHIV. More than half of respondents were either unaware or uncertain about the existence of informal support. Peer-employees claimed that one of the challenges of disclosing HIV to receive peer support is that they may face stigma. CONCLUSION: The application of GIPA/MEPA results in positive outcomes in the workplace. The study emphasizes the need to facilitate access to informal support.

'HIV made me fabulous': a qualitative analysis of embodied storytelling in film to address stigma, further understandings of U=U and advance gender equity.

BACKGROUND: Even with the Undetectable equals Untransmittable campaign (U=U) campaign, women living with HIV continue to experience intersecting forms of stigma. We explored how the somatic experiences of viewing a film about U=U and women could help individuals gain deeper understandings of HIV and alter learned prejudices. METHODS: HIV Made Me Fabulous is a film that utilises embodied storytelling to tell the story of a trans woman living through social and historical traumas of HIV. Four online film screenings and focus group discussions took place between June 2020 and June 2021, with participants attending from Canada, Australia, South Africa, Kenya, Zimbabwe and India. Two sessions were held with women living with HIV (n =16) and two with HIV-negative individuals (n =12). Transcripts were analysed via thematic analysis using Lafrenière and Cox's framework to assess its impact. RESULTS: Participants experienced strong, diverse emotional responses and sometimes physical effects from viewing the film. These somatic experiences furthered engagement with key messages in the film, including U=U, intersectional identities, and impacts of patriarchal systems. Women living with HIV commented on unique gendered risks experienced during disclosure, and the pressures of reaching an undetectable viral load. Women also commented how the film resulted in deeper reflection of their deservingness of pleasure. Regardless of HIV status, participants expressed motivation towards influencing change that included addressing biases and sharing U=U with others. CONCLUSIONS: Embodied storytelling in film is an effective method to counter both intra- and inter-personal HIV-related stigma by provoking responses that enhance compassion for oneself and others.

Sexual Satisfaction of Midlife Women Living With HIV in Canada: A Prospective Cohort Analysis.

BACKGROUND: Although sexual activity and function decline in older women living with HIV, positive dimensions of sexual health, such as satisfaction, are relatively unexplored. We evaluated the prevalence of sexual satisfaction for midlife women with HIV and assessed its relation to women's physical, mental, and sociostructural experiences. SETTING: We studied women in the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) over 3 survey waves (2013-2018). METHODS: We included women living with HIV aged ≥45 years who reported ever having consensual sex. Sexual satisfaction was assessed using an item from the Sexual Satisfaction Scale for Women and was dichotomized into satisfactory ("completely/very/reasonably satisfactory") and not satisfactory ("not very/not at all satisfactory"). Probable depression was based on CES-D ≥10. Multivariable logistic regression and fixed effects models determined correlates of sexual satisfaction. Reasons for sexual inactivity and alternate forms of sexual expression were also explored. RESULTS: Among 508 midlife women, 61% were satisfied with their sexual lives at baseline. Women with probable depression had lower odds of sexual satisfaction than those without (aOR: 0.44; 95% CI: 0.27 to 0.71) and worsening depressive symptoms over time were associated with poorer sexual satisfaction ( P = 0.001). Increased sexual activity was associated with higher sexual satisfaction (aOR: 2.75; 95% CI: 1.54 to 4.91); however, 51% of women reporting sexual satisfaction were sexually inactive. Sexually inactive women engaged in alternate forms of sexual expression such as self-pleasure (37%) and intimate relationships without sex (13%). CONCLUSION: Midlife women with HIV have high rates of sexual satisfaction, even in the absence of sexual activity. Depressive symptoms were closely associated with sexual dissatisfaction, alerting providers to the importance of screening for depression and sexual health together.

Prevalence and correlates of sexual concerns and associated distress among women living with HIV in Canada.

OBJECTIVES: We assessed the prevalence and correlates of sexual concerns and associated distress among women living with HIV in Canada. METHODS: We analyzed cross-sectional survey data from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (2017-2018). Self-identified women living with HIV were asked about sexual concerns post-HIV diagnosis and associated distress (none, mild, moderate, severe). Five areas of concern were assessed, including difficulties related to sexual self-esteem, sexual function, relationships, and emotional and behavioral aspects of sex. Logistic regression analyses identified correlates of reporting any sexual concerns and severe distress about these concerns. RESULTS: Of 906 participants (median age 48, Q1-Q3 = 41-55), 596 (65.8%) reported sexual concerns post-HIV diagnosis. We found a high prevalence of concerns related to relationships (43.3%), sexual self-esteem (49.4%), and emotional aspects of sex (45.4%), relative to sexual functioning (38.4%) and behavioral aspects (33.7%). Of those with sexual concerns, 36.7% reported severe distress. Reports of severe distress were the highest for relationship difficulties (32.5%), relative to other areas of concern (21.4%-22.8%). In adjusted analyses, women reporting sexual dissatisfaction and high HIV-related stigma had significantly higher odds of reporting sexual concerns. Conversely, those reporting higher resilience, better mental health, African, Caribbean, and Black identity, and sex as somewhat unimportant, not at all important, or neutral to their lives had lower adjusted odds. Factors associated with severe distress about sexual concerns included older age, body dissatisfaction, sexual dissatisfaction, and high HIV-related stigma, while better mental health and getting support from someone living with HIV were protective. While 84.4% of women had discussed with a provider how viral load impacts transmission risk, only 40.6% had conversations about sexual wellbeing. CONCLUSION: More attention to women's sexual wellbeing within social and relational contexts is critical to ensure the sexual rights of women living with HIV are upheld.

Patient perspectives on quality of care for depression and anxiety in primary health care teams: A qualitative study.

BACKGROUND: Widespread policy reforms in Canada, the United States and elsewhere over the last two decades strengthened team models of primary care by bringing together family physicians and nurse practitioners with a range of mental health and other interdisciplinary providers. Understanding how patients with depression and anxiety experience newer team-based models of care delivery is essential to explore whether the intended impact of these reforms is achieved, identify gaps that remain and provide direction on strengthening the quality of mental health care. OBJECTIVE: The main study objective was to understand patients' perspectives on the quality of care that they received for anxiety and depression in primary care teams. METHODS: This was a qualitative study, informed by constructivist grounded theory. We conducted focus groups and individual interviews with primary care patients about their experiences with mental health care. Focus groups and individual interviews were recorded and transcribed verbatim. Grounded theory guided an inductive analysis of the data. RESULTS: Forty patients participated in the study: 31 participated in one of four focus groups, and nine completed an individual interview. Participants in our study described their experiences with mental health care across four themes: accessibility, technical care, trusting relationships and meeting diverse needs. CONCLUSION: Greater attention by policymakers is needed to strengthen integrated collaborative practices in primary care so that patients have similar access to mental health services across different primary care practices, and smoother continuity of care across sectors. The research team is comprised of individuals with lived experience of mental health who have participated in all aspects of the research process.

Regional differences in perceived treatments needs and priorities in relation to antiretroviral therapy among people living with HIV in 25 countries.

While geographic differences in HIV burden are well documented, less is known about regional differences in perceived treatment needs. To fill this gap, the 2019 Positive Perspectives study of people living with HIV (PLHIV) was conducted in 25 countries across Northern America, Latin America, the Asian region, Europe (EU/Schengen countries), Russia, Australia, and South Africa (n = 2389). Overall mean duration of HIV was 10.1 (SD = 9.6) years. The perception that HIV had a negative impact on day-to-day life was lowest among participants from South Africa (14.0%[25/179]) and highest among participants from the Asian region (55.2%[127/230]). Most of the regional gap in the perception that HIV had a negative impact on daily life was explained by regional differences in medication-related unmet needs, stigma, demographic factors, and comorbidities. The percentage who felt they understood their treatment was highest among participants from Australia (87.5%[105/120]) and lowest among those from Russia (62.0%[93/150]), the Asian region (62.2%[143/230]), and South Africa (62.6%[112/179]). Among participants from Northern America, Europe, and Latin America, the treatment goals with the largest absolute increase in perceived importance, from time of starting treatment to time of survey among those diagnosed for ≥1 year, were minimizing the long term impact of antiretroviral treatment and keeping the number of medicines in their antiretroviral regimen at a minimum. Tailored approaches to care of PLHIV are needed as different regions have different disease burden and treatment needs. Equitable approaches to HIV care are needed across and within regions to ensure that patients' unmet needs and preferences are addressed to improve their overall wellbeing and health-related quality of life.

Shared Decision Making Between Patients and Healthcare Providers and its Association with Favorable Health Outcomes Among People Living with HIV.

We assessed patient-provider communication in HIV care; data were from the 2019 Positive Perspectives Survey of people living with HIV (PLHIV) from 25 countries (n = 2389). A significantly greater proportion of recently diagnosed individuals were interested in being involved when it comes to decisions about their HIV treatment compared with any other group (72.8% [399/548], 63.1% [576/913], and 62.6% [581/928], diagnosis year: 2017-2019, 2010-2016, and pre-2010 respectively) but reported less understanding of their treatment compared with those reporting the longest duration (66.8% [366/548], 68.6% [626/913], and 77.3% [717/928], respectively). One-third of PLHIV with salient treatment-related concerns were uncomfortable discussing with providers. Of participants who felt that their HIV medication limited their life but did not discuss their concerns with their provider (n = 203), top reasons for not discussing were: perception nothing could be done (49.3% [100/203]), provider never brought up the issue (37.9% [77/203]), and not wanting to appear difficult (30.5% [62/203]). To continue to identify and address unmet treatment needs among PLHIV, providers need to ensure that there is ongoing open dialogue.

Physical, Emotional, and Psychosocial Challenges Associated with Daily Dosing of HIV Medications and Their Impact on Indicators of Quality of Life: Findings from the Positive Perspectives Study.

To assess challenges with daily oral antiretroviral therapy (ART), we analyzed data for 2389 participants in the 2019 Positive Perspectives survey of people living with HIV in 25 countries. ART-related challenges reported included difficulty swallowing pills (33.1% [790/2389]); stress from daily dosing routine (33.3% [795/2389]); bad memories from daily intake of HIV medication (35.1%[839/2389]), and concern "that having to take pills every day means a greater chance of revealing my HIV status to others" (37.9% [906/2389]). Individuals who felt empowered by daily oral dosing ["taking my pill(s) every day reassures me that my HIV is being kept under control"] had 69% higher odds of optimal overall health (AOR 1.69, 95% CI 1.40-2.04). Conversely, odds of optimal overall health were lower among those who felt daily pill intake "limits my day-to-day life" (AOR 0.53, 95% CI 0.44-0.64). These findings show that there is need for increased flexibility of ART delivery to meet diverse patient needs.

Prevalence, determinants, and impact of suboptimal adherence to HIV medication in 25 countries.

Modern antiretroviral therapy (ART) has improved the lives of people living with HIV (PLHIV) but currently requires daily adherence. We assessed prevalence and correlates of suboptimal adherence, and measured associations with self-reported health outcomes. Data were from web-based surveys of confirmed HIV+ adults on antiretroviral treatment within 25 countries during 2019 (n = 2389). Suboptimal adherence was a report of ≥1 reason for missing ART ≥5 times within the past month. Multivariable logistic regression examined associations between suboptimal adherence and self-reported overall health and virologic suppression. Overall, 24.1% (575/2389) reported suboptimal adherence, from 10.0% (5/50) in Austria, to 62.0% (31/50) in China. The most common reasons for missing ART ≥5 times in the overall population were feeling depressed/overwhelmed (7.4%, 176/2389), trying to forget about HIV (7.0%, 168/2389), and work (6.1%, 145/2389). Correlates of suboptimal adherence included being heterosexual, <50 years old, ≤high school, having gastrointestinal treatment side effects, and privacy concerns. Odds of suboptimal overall health were 1.41 (95%CI, 1.11-1.80), 2.10 (95%CI, 1.65-2.68), and 2.55 (95%CI, 2.00-3.25) among those who reported the maximum number of times missed ART for any reason within the past month as 1, 2-4, or ≥5 times respectively, vs not missing at all. Odds of virologic nonsuppression were 1.80 (95%CI, 1.33-2.45), and 2.24 (95%CI, 1.66-3.02) for 2-4, or ≥5 times of missed ART respectively, vs not missing at all; missing for only 1 time was not significantly associated with virologic nonsuppression. Novel ART strategies designed to improve adherence along with interventions to empower PLHIV and support self-medication may improve health outcomes and quality of life.

How women living with HIV react and respond to learning about Canadian law that criminalises HIV non-disclosure: 'how do you prove that you told?'

The Women, ART and the Criminalization of HIV Study is a qualitative, arts-based research study focusing on the impact of the HIV non-disclosure law on women living with HIV in Canada. The federal law requires people living with HIV to disclose their HIV-positive status to sexual partners before engaging in sexual activities that pose what the Supreme Court of Canada called a 'realistic possibility of transmission'. Drawing on findings from seven education and discussion sessions with 48 women living with HIV regarding HIV non-disclosure laws in Canada, this paper highlights the ways in which women living with HIV respond to learning about the criminalisation of HIV non-disclosure. The most common emergent themes included: the way the law reproduces social and legal injustices; gendered experiences of intimate injustice; and the relationship between disclosure and violence against women living with HIV. These discussions illuminate the troubling consequences inherent in a law that is antithetical to the science of HIV transmission risk, and that fails to acknowledge the multiple barriers to HIV disclosure that women living with HIV experience. Women's experiences also highlight the various ways the law contributes to their experiences of sexism, racism and other forms of marginalisation in society.

Pregnancy planning preferences among people and couples affected by human immunodeficiency virus: Piloting a discrete choice experiment.

Decision-making related to pregnancy planning is complex and human immunodeficiency virus (HIV) may further complicate the process. With increasing rates of pregnancy among individuals affected by HIV, the need to understand decision-making is imperative. The primary objectives of this pilot study were to confirm the feasibility of using discrete choice experimentation (DCE) to elicit an understanding of this process and to determine the acceptability of the choice factors that were included in two novel DCEs, while gathering a preliminary understanding of preference. The choice attributes were risk of vertical HIV transmission, risk of horizontal HIV transmission, cost, probability of conception, method of conception, and travel time. Thirteen respondents completed a DCE for serodiscordant couples in which the female partner was HIV-positive, and 12 respondents completed a DCE for seroconcordant couples. All respondents' utility for an increased chance of a successful pregnancy was positive and statistically significant. In the serodiscordant dyads, the attributes of risk of horizontal transmission, risk of vertical transmission, a 5-h travel time to clinic, and cost were significantly associated with decreased utility. In the seroconcordant dyads, only the attributes of chance of risk of vertical transmission and cost were significantly associated with decreased utility. The serodiscordant dyads preferred home insemination with a syringe and the seroconcordant couples preferred conception methods within fertility clinics, over condomless sex with timed ovulation. On average, participants were willing to pay more for greater chance of conception and less willing to pay for increased risk of transmission. Couples affected by HIV are willing to participate in a DCE and the attributes that were included all seem relevant except risk of vertical transmission. There are various real-life trade-offs that are made during pregnancy planning with HIV and better understanding of these can be useful for clinicians during preconception counseling.

' They should understand why ' The knowledge, attitudes and impact of the HIV criminalisation law on a sample of HIV+ women living in Ontario.

Over 60 countries criminalise 'the "willful" transmission of HIV'. Such a law has the potential to hinder public health interventions. There is limited literature discussing the perceptions of this law and the impact, it has had on HIV-positive women. This paper describes the knowledge of and attitudes of this law by HIV-positive women living in Ontario; and their experiences with its application. Three group discussions (n = 10) and 17 in-depth interviews with HIV-positive women age: 21-56 years. Data were analysed using a modified thematic approach. Most of the respondents knew about the law with regard to adult HIV transmission. However, very few knew about any laws related to mother to child HIV transmission, although some reported having had their children taken away because of breastfeeding. Respondents felt that the law could be fair and protective if there were means of providing a priori support to those women who have been disadvantaged social-culturally and structurally. Without this support, the law could potentially lead HIV-positive women into hiding and not accessing services that could help them. There is need for the law implementers to consider these findings if they are to support the public health efforts to control HIV.

The experiences of making infant feeding choices by African, Caribbean and Black HIV-positive mothers in Ontario, Canada.

UNLABELLED: Mothers in HIV-endemic countries are advised to exclusively breastfeed their babies until six months because of lack of resources and better chances for child survival, while in developed countries, replacement feeding is advised. What are the experiences of HIV-positive women who migrate from HIV-endemic countries to developed countries, when making infant feeding choices? METHODS: In-depth interviews and focus group discussions with a total of 25 women living with HIV in Toronto and Hamilton, Ontario. RESULTS: Free infant formula alleviates the practical constraints in making infant feeding choices. However, cultural beliefs and social expectations constrain HIV-positive mothers' decision not to breastfeed. This is further complicated by the different policies. Service providers should understand the psychological and emotional experiences of the mothers in order to provide the appropriate support. Peers could be potential sources of support. The differences in policies are issues of global justice that need to be addressed.

Recruitment of HIV-Positive Women in Research: Discussing Barriers, Facilitators, and Research Personnel's Knowledge.

BACKGROUND: Women have historically been under-represented in HIV research, partly due to ineffective recruitment strategies. OBJECTIVE: To improve the existing understanding of recruitment for HIV-positive women based on a province-wide cross-sectional study. METHODS: A survey was emailed to all site coordinators who recruited participants in a study involving 490 HIV-positive women living in Ontario, Canada. The survey consisted of questions regarding the important recruitment barriers and successes. Quantitative data were then contextualized within extensive knowledge from research personnel and team members. RESULTS: Completed surveys were received from (89%) site coordinators (34/38) and 98% (31/34) were women. The highest ranked recruitment barriers identified were: sensitivity of the research topic (59%), time/availability constraints (59%), language barriers (53%), HIV disclosure/stigma issues (47%), lack of trust of research personnel (41%), fear of research (41%) and inaccessibility to child care and transportation (41%). The respondents felt that the most important personal attributes for recruitment were research personnel who were respectful (97%), skilled (91%), flexible (88%) and empathetic (88%) and had good communication skills (88%). The most successful recruitment strategies identified were: developing a strong rapport (88%) that was facilitated by an empathetic relationship (100%), acknowledging the sensitive nature of the research topic (94%), providing cash financial compensation (88%), and developing recruitment strategies unique to women (88%). CONCLUSION: There are differences in the approaches needed for the recruitment of HIV-positive women in research. For successful recruitment of HIV-positive women, a strong rapport between the research personnel and study participants is important. This rapport is facilitated by having study personnel who are respectful, trustworthy, empathetic, and flexible. Population-specific recruitment strategies are important to ensure adequate recruitment of minority groups in research with greater gender consideration for women requiring specific attention.

Fertility desires and intentions of HIV-positive women of reproductive age in Ontario, Canada: a cross-sectional study.

BACKGROUND: Improvements in life expectancy and quality of life for HIV-positive women coupled with reduced vertical transmission will likely lead numerous HIV-positive women to consider becoming pregnant. In order to clarify the demand, and aid with appropriate health services planning for this population, our study aims to assess the fertility desires and intentions of HIV-positive women of reproductive age living in Ontario, Canada. METHODOLOGY/PRINCIPAL FINDINGS: A cross-sectional study with recruitment stratified to match the geographic distribution of HIV-positive women of reproductive age (18-52) living in Ontario was carried out. Women were recruited from 38 sites between October 2007 and April 2009 and invited to complete a 189-item self-administered survey entitled "The HIV Pregnancy Planning Questionnaire" designed to assess fertility desires, intentions and actions. Logistic regression models were fit to calculate unadjusted and adjusted odds ratios of significant predictors of fertility intentions. The median age of the 490 participating HIV-positive women was 38 (IQR, 32-43) and 61%, 52%, 47% and 74% were born outside of Canada, living in Toronto, of African ethnicity and currently on antiretroviral therapy, respectively. Of total respondents, 69% (95% CI, 64%-73%) desired to give birth and 57% (95% CI, 53%-62%) intended to give birth in the future. In the multivariable model, the significant predictors of fertility intentions were: younger age (age<40) (p<0.0001), African ethnicity (p<0.0001), living in Toronto (p = 0.002), and a lower number of lifetime births (p = 0.02). CONCLUSIONS/SIGNIFICANCE: The proportions of HIV-positive women of reproductive age living in Ontario desiring and intending pregnancy were higher than reported in earlier North American studies. Proportions were more similar to those reported from African populations. Healthcare providers and policy makers need to consider increasing services and support for pregnancy planning for HIV-positive women. This may be particularly significant in jurisdictions with high levels of African immigration.