Enjeux de la communication familiale entourant le VIH et la sexualité : perspectives d'adolescents vivant avec le VIH depuis la naissance

Les études sur les familles vivant avec le VIH se sont principalement intéressées à la période précédant l'annonce du diagnostic à l'enfant. Rares sont celles portant sur les dynamiques de communication intrafamiliale suite à l'annonce du diagnostic, ce que propose la présente étude. Dans le cadre d'une recherche qualitative, 29 jeunes, âgés de 10 à 18 ans, vivant avec le VIH depuis la naissance et suivis au Centre Maternel et Infantile sur le sida du CHU Sainte-Justine à Montréal, ont participé à des entretiens individuels semi-dirigés. Les données recueillies ont fait l'objet d'une analyse de contenu. L'analyse a été guidée par la théorie bowenienne des systèmes familiaux (Bowen, 1984) et la théorie de la gestion de la communication privée de Petronio (2002). Les témoignages recueillis suggèrent que les jeunes ont appris en moyenne à l'âge de 11 ans leur diagnostic d'infection au VIH. Avant cette annonce, les jeunes avaient conscience d'être malade, mais ignoraient qu'il s'agissait du VIH. Certains ont déduit que leurs parents préféraient retarder l'annonce du diagnostic et identifient trois stratégies parentales à celle fin: ne pas répondre à leurs questions, dévoiler une infection secondaire et répondre de façon évasive ou utiliser un vocabulaire médical. Suite à l'annonce du diagnostic, la règle du silence semble continuer à régir les dynamiques de communication familiale en regard du VIH et de la sexualité. Les rares discussions rapportées par les jeunes se limitent aux questions relatives à la médication et à la prévention de la transmission sexuelle. Ce silence apparaît préserver l'équilibre familial en occupant trois fonctions: protéger la mère de la culpabilité de la transmission; assurer l'harmonie familiale; se sentir normal face aux autres. Le statut infectieux de l'enfant et du parent n'est généralement pas révélé à la famille élargie préservant ainsi leur intégration au sein de la famille en les protégeant du rejet, de la trahison et du jugement. À la lumière de ces résultats, cinq temps logiques ont été développés à travers lesquels les adolescents apprennent à gérer la divulgation de leur diagnostic. En conclusion, il apparaît pertinent de développer des interventions visant à briser le silence au sein de ces familles en favorisant le partage d'expériences affectives entre les membres. Ces interventions devront toutefois tenir compte des fonctions protectrices et stabilisatrices du secret et du silence afin de préserver le fragile équilibre du système familial. ______________________________________________________________________________ MOTS-CLÉS DE L’AUTEUR : Adolescents, VIH, Transmission verticale, Systémique, Communication, Éducation sexuelle, Méthodologie qualitative, Divulgation, Silence

Sexual and reproductive health and human rights of women living with HIV

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/138378/1/jia20834-sup-0001.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/138378/2/jia20834.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/138378/3/jia20834-sup-0002.pd

Bifurcations biographiques : l’expérience du dévoilement du diagnostic du point de vue d’adolescents infectés par le VIH en période périnatale

Dans le cas de la transmission de la mère à l’enfant du VIH, l’un des principaux enjeux concerne le dévoilement du diagnostic aux jeunes infectés (Champion et al., 1999; Murphy et al., 2002; Wiener et al., 2007), qui pourrait être vécu comme un point de bifurcation biographique. L’objectif est d’explorer l’expérience du dévoilement du diagnostic du point de vue d’adolescents vivant avec le VIH depuis la naissance. Vingt-neuf jeunes (10-18 ans) VIH+ ont accordé une entrevue individuelle semi-dirigée portant sur le dévoilement du statut sérologique. Les données recueillies ont fait l’objet d’une analyse de contenu (Paillé et Mucchielli, 2005; Sabourin, 2008). Le dévoilement du statut sérologique s’inscrit dans une trajectoire en trois temps : 1) une réalité cachée où les adolescents ignorent leur statut sérologique; 2) une réalité enfin dévoilée où ils apprennent, vers l’âge de 11 ans, qu’ils sont infectés par le VIH et; 3) une réalité à intégrer progressivement où le dévoilement participe à leur construction identitaire personnelle et sociale. Le dévoilement s’inscrit dans une continuité biographique en légitimant les traitements ARV reçus alors qu’une transformation progressive semble être envisagée par les jeunes quant à leur intimité et leur sexualité.When HIV transmission from mother to child occurs, one of the major concerns is revealing the diagnosis to the infected children, something that could be experienced as a biographical turning point. The objective is to explore the effect of the disclosure of the diagnosis as experienced by adolescents who have been living with HIV since their birth. Twenty-nine HIV-positive young (aged from 10 to 18) agreed to a semi-structured individual interview focussed on the revelation of their serologic status. The data thus gathered was submitted to a content analysis (Paillé and Mucchielli, 2005; Sabourin, 2008). The disclosure of the serologic status runs through three stages: 1) that of a hidden reality, where the adolescents are unaware of their serologic status; 2) that of a reality which is finally disclosed when, at about the age of 11, they learn that they have an HIV infection; and 3) that of a reality they need to progressively integrate, where its disclosure becomes a participating factor in the construction of their personal and social identities. The disclosure becomes an extension of their biographical continuity by legitimizing their ARV treatments, at a time when they appear to be contemplating gradual changes with respect to their private lives and personal sexuality

Geographic differences in the experiences of HIV-related stigma for women living with HIV in northern and rural communities of Ontario, Canada

This is the final published version of an article published in the Open Access journal, Rural and Remote Health. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/)In Canada, individuals living in northern and rural regions report more barriers to health service access. For people living with HIV, these barriers may be exacerbated by experiences of HIV-related stigma, and women living with HIV can be disproportionately affected because of intersections of multiple forms of oppression, including racism, sexism and classism. To further understand the impact of geography on the wellbeing of women living with HIV, this study assessed geographic differences in HIV-related stigma experiences among women in the Canadian HIV Women's Sexual & Reproductive Health Cohort Study (CHIWOS).Methods: CHIWOS is a multisite cohort study of women living with HIV in Canada that operates under community-based participatory research methodology along with GIPA (greater involvement of people with HIV/AIDS) and MIWA (meaningful involvement of women living with HIV/AIDS) principles. This analysis compared peer research associate-administered questionnaire data between participants in northern and southern Ontario, Canada, and between participants in rural and non-rural Ontario. Northern regions were defined by healthcare delivery jurisdiction. The primary outcome was the 10-item shortened HIV Stigma Scale score. Multivariable linear regression models assessed the association between rural and northern regions and stigma score. Results: Sixteen women were excluded due to incomplete HIV Stigma Scale data. Of 701 women included in the analysis, 66 (9.4%) were from northern regions and 24 (3.4%) were from rural regions. Mean stigma scores were 23.9 (standard deviation (SD) 8.0) overall, 26.7 (SD 8.8) in northern regions, 23.6 (SD 7.9) in southern regions, 28.3 (SD 10.1) in rural regions, and 23.8 (SD 7.8) in non-rural regions. In multivariable analyses, northern and rural regions of residence were associated with a 3.05 (95% confidence interval (CI): 0.77, 5.32) and 4.83 (95% CI: 1.37, 8.28) point increase in stigma score, respectively. Conclusions: Living in both northern and rural regions of Ontario was associated with higher HIV Stigma Scale scores. These geographic discrepancies in experiences of HIV-related stigma highlight the need for region-specific programs to reduce HIV-related stigma and to support people living with HIV who are affected by HIV-related stigma, particularly those living in geographically isolated regions. Prior qualitative studies have documented the important impact of HIV-related stigma, and this study supports these observations with quantitative data from a population that is often under-represented in HIV research.DJ is supported by an Ontario Women's Health Scholars Award (Council of Ontario Universities) and the University of British Columbia Clinician Investigator Program

Prevalence of Physical Health, Mental Health, and Disability Comorbidities among Women Living with HIV in Canada

Life expectancy for people living with HIV has increased, but management of HIV is now more complex due to comorbidities. This study aimed to measure the prevalence of comorbidities among women living with HIV in Canada. We conducted a cross-sectional analysis using data from the 18-months survey (2014–2016) of the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS). Self-report of diagnosed conditions was used to measure lifetime prevalence of chronic physical conditions, current mental health conditions, and disabilities. We examined frequency of overlapping conditions and prevalence stratified by gender identity, ethnicity, and age. Among 1039 participants, 70.1% reported a physical health diagnosis, 57.4% reported a current mental health diagnosis, 19.9% reported a disability, and 47.1% reported both physical and mental health comorbidities. The most prevalent comorbidities were depression (32.3%), anxiety (29.5%), obesity (26.7%, defined as body mass index >30 kg/m2), asthma/chronic obstructive pulmonary disease (23.3%), sleep disorder (22.0%), drug addiction (21.9%), and arthritis/osteoarthritis (20.9%). These results highlight the complexity of HIV care and the important prevalence of comorbidities. Personalized health care that integrates care and prevention of all comorbidities with HIV, with attention to social determinants of health, is necessary to optimize health and well-being of women living with HIV

Transition from Pediatric to Adult HIV Care for Young Women Living with HIV

Transitioning from pediatric to adult care is a complicated process for youth with chronic illnesses. This study elucidates the unique factors affecting transition preparedness and perception of adult HIV care among a cohort of young women with HIV. Between 2013 and 2015, 48 women with HIV, who had experience with pediatric HIV care, were enrolled in a large Canadian cohort study. Variables were self-reported during peer-administered surveys. Only 60% reported feeling prepared for transition. Having never had contact with child protection services (P = .049), never been in foster care (P = .011), never been in a group home (P = .036), reporting a higher current CD4 count (P = .033), and reporting a younger ideal age for transition (P = .041) were associated with transition preparedness. Eighty-four percent reported equivalent or better HIV care following transition. Correlates of equivalent/better care following transition included lower personal income (P = .023), higher CD4 count (P = .021), care by an adult infectious diseases specialist (P = .002), and transition preparedness (P = .005). Our findings highlight the importance of adequate transition preparation and its effect on perception of care following transition.This work was supported by the Canadian Institutes of Health Research (CIHR) under Grant MOP-111041; the CIHR Canadian HIV Trials Network under Grant CTN 262, the Ontario HIV Treatment Network (OHTN), and the Academic Health Science Centres (AHSC) Alternative Funding Plans (AFP) Innovation Fund

Hiring, training, and supporting Peer Research Associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV

Background: A community-based research (CBR) approach is critical to redressing the exclusion of women—particularly, traditionally marginalized women including those who use substances—from HIV research participation and benefit. However, few studies have articulated their process of involving and engaging peers, particularly within large-scale cohort studies of women living with HIV where gender, cultural and linguistic diversity, HIV stigma, substance use experience, and power inequities must be navigated. Methods: Through our work on the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), Canada’s largest community-collaborative longitudinal cohort of women living with HIV (n = 1422), we developed a comprehensive, regionally tailored approach for hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs). To reflect the diversity of women with HIV in Canada, we initially hired 37 PRAs from British Columbia, Ontario, and Quebec, prioritizing women historically under-represented in research, including women who use or have used illicit drugs, and women living with HIV of other social identities including Indigenous, racialized, LGBTQ2S, and sex work communities, noting important points of intersection between these groups. Results: Building on PRAs’ lived experience, research capacity was supported through a comprehensive, multi-phase, and evidence-based experiential training curriculum, with mentorship and support opportunities provided at various stages of the study. Challenges included the following: being responsive to PRAs’ diversity; ensuring PRAs’ health, well-being, safety, and confidentiality; supporting PRAs to navigate shifting roles in their community; and ensuring sufficient time and resources for the translation of materials between English and French. Opportunities included the following: mutual capacity building of PRAs and researchers; community-informed approaches to study the processes and challenges; enhanced recruitment of harder-to-reach populations; and stronger community partnerships facilitating advocacy and action on findings. Conclusions: Community-collaborative studies are key to increasing the relevance and impact potential of research. For women living with HIV to participate in and benefit from HIV research, studies must foster inclusive, flexible, safe, and reciprocal approaches to PRA engagement, employment, and training tailored to regional contexts and women’s lives. Recommendations for best practice are offered.Other UBCNon UBCReviewedFacult