Saara Greene

Direct and indirect effects of perceived social support on health-related quality of life in persons living with HIV/AIDS

Abstract Research has established a link between perceived social support and health-related quality of life (HRQOL) among persons living with HIV/AIDS. However, little is known about the ways through which social support influences HRQOL. This study examined the direct and indirect effects of perceived social support on physical and mental HRQOL in a sample of 602 adults living with HIV in Ontario, Canada. Participants completed the Medical Outcomes Study-HIV (MOS-HIV) health survey, the MOS-HIV Social Support Scale (MOS-HIV-SSS), and the Center for Epidemiological Studies Depression-Revised scale. Data on demographic and clinical characteristics were also collected. The direct and indirect effects of social support on the two MOS-HIV HRQOL summary measures, that is, physical health summary (PHS) and mental health summary (MHS), were estimated in multiple linear regression analyses. Perceived social support had significant direct effects on PHS (B=0.04, p<0.01) and MHS (B=0.05, p<0.01). It also had significant indirect effect on both PHS (B=0.04, p<0.01) and MHS (B=0.11, p<0.01), mediated by depressive symptoms. Interventions that enhance social support have the potential to contribute to better HRQOL either directly or indirectly by decreasing the deleterious effect of depressive symptoms on HRQOL.

Women-specific HIV/AIDS services: identifying and defining the components of holistic service delivery for women living with HIV/AIDS.

The increasing proportion of women living with HIV has evoked calls for tailored services that respond to womens specific needs. The objective of this investigation was to explore the concept of women‐specific HIV/AIDS services to identify and define what key elements underlie this approach to care.

Between skepticism and empowerment: the experiences of peer research assistants in HIV/AIDS, housing and homelessness community‐based research

People living with HIV/AIDS (PHAs) in Canada are a highly researched population, yet their inclusion in the research process is minimal. Community‐based research (CBR) has become a recognized tool for addressing issues of power and exclusion within researcher/community relationships by inviting the communitys equitable involvement as research partners. Within the context of HIV/AIDS research, this includes a commitment to the Greater Involvement of People Living with HIV/AIDS (GIPA) at all stages of the research process. One way of adopting GIPA principles within CBR is through providing employment, research training, and capacity building opportunities for PHAs as peer research assistants (PRAs). Drawing on data from two in‐depth focus groups with seven PRAs from the Positive Spaces, Healthy Places: Community‐based Research Study, this paper will highlight important methodological practices for academic and community‐based researchers who are working with and supporting PRAs.

Under My Umbrella: the housing experiences of HIV positive parents who live with and care for their children in Ontario.

Positive Spaces, Healthy Places (PSHP) is the first longitudinal community-based research (CBR) initiative in Canada to examine housing stability and its relationship to health related quality of life (HRQOL) for people living with of HIV/AIDS (PHAs). As part of our mixed method data collection strategy in-depth, semi-structured interviews were conducted with 50 PHAs across Ontario to provide a deeper understanding of the impact that housing instability has on their mental and physical health. Emerging from the qualitative interviews were the unique issues and concerns that were reported by parents who live with and care for their children. These parents face dire housing, economic and social challenges that are associated with significant risks for poor health outcomes. Poor housing conditions, unsafe neighborhoods, barriers to supports for themselves and their children, HIV related stigma, discrimination, racism, and poverty have been identified by these families as being among their most pressing concerns. This results in increased stress and anxiety that has a negative impact on the mental health of HIV positive parents. In order to more effectively support HIV positive parents and their children, health and social service practices and policies must respond to the unique challenges that face these families.

Housing characteristics and their influence on health-related quality of life in persons living with HIV in Ontario, Canada: results from the positive spaces, healthy places study.

Although lack of housing is linked with adverse health outcomes, little is known about the impacts of the qualitative aspects of housing on health. This study examined the association between structural elements of housing, housing affordability, housing satisfaction and health-related quality of life over a 1-year period. Participants were 509 individuals living with HIV in Ontario, Canada. Regression analyses were conducted to examine relationships between housing variables and physical and mental health-related quality of life. We found significant cross-sectional associations between housing and neighborhood variables—including place of residence, housing affordability, housing stability, and satisfaction with material, meaningful and spatial dimensions of housing—and both physical and mental health-related quality of life. Our analyses also revealed longitudinal associations between housing and neighborhood variables and health-related quality of life. Interventions that enhance housing affordability and housing satisfaction may help improve health-related quality of life of people living with HIV.ResumenA pesar de que la falta de vivienda está vinculada a consecuencias adversas para la salud, conocemos poco sobre el impacto de los aspectos cualitativos de la vivienda sobre la salud. Este estudio examinó la asociación entre elementos estructurales de la vivienda, accesibilidad a la vivienda, satisfacción con la vivienda y la calidad de vida relacionada con la salud (CVRS) por un período de un año. Los participantes fueron 509 personas que viven con el VIH en Ontario, Canada. Análisis de regresión lineal multivariado se llevaron a cabo para examinar la relación entre las variables de vivienda y la calidad de vida relacionada a la salud física y mental. Los resultados de los análisis transversales mostraron una asociación significativa entre las variables de la vivienda y del vecindario - incluyendo lugar de residencia, accesibilidad de precio, la estabilidad de la vivienda y la satisfacción con las dimensiones materiales, de significado y espaciales de la vivienda - y la calidad de vida tanto física como mental. Nuestros análisis también revelaron asociaciones longitudinales entre las variables de vivienda y del vecindario con la CVRS a traves del tiempo. Las intervenciones que mejoran el acceso y la satisfacción con la vivienda pueden ayudar a mejorar la CVRS de las personas que viven con el VIH.

Establishing the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing Community-based Research in a Large National Quantitative Study

BackgroundCommunity-based research has gained increasing recognition in health research over the last two decades. Such participatory research approaches are lauded for their ability to anchor research in lived experiences, ensuring cultural appropriateness, accessing local knowledge, reaching marginalized communities, building capacity, and facilitating research-to-action. While having these positive attributes, the community-based health research literature is predominantly composed of small projects, using qualitative methods, and set within geographically limited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We present the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a large-scale, multi-site, national, longitudinal quantitative study that has operationalized community-based research in all steps of the research process. Successes, challenges and further considerations are offered.DiscussionThrough the integration of community-based research principles, we have been successful in: facilitating a two-year long formative phase for this study; developing a novel survey instrument with national involvement; training 39 Peer Research Associates (PRAs); offering ongoing comprehensive support to PRAs; and engaging in an ongoing iterative community-based research process. Our community-based research approach within CHIWOS demanded that we be cognizant of challenges managing a large national team, inherent power imbalances and challenges with communication, compensation and volunteering considerations, and extensive delays in institutional processes. It is important to consider the iterative nature of community-based research and to work through tensions that emerge given the diverse perspectives of numerous team members.ConclusionsCommunity-based research, as an approach to large-scale quantitative health research projects, is an increasingly viable methodological option. Community-based research has several advantages that go hand-in-hand with its obstacles. We offer guidance on implementing this approach, such that the process can be better planned and result in success.

Breaking the Glass Ceiling: Increasing the Meaningful Involvement of Women Living With HIV/AIDS (MIWA) in the Design and Delivery of HIV/AIDS Services

The meaningful involvement of women living with HIV/AIDS (MIWA) is a key feature of women-centred HIV care, yet little is known about transforming MIWA from principle to practice. Drawing on focus group data from the Canadian HIV Womens Sexual and Reproductive Health Cohort Study (CHIWOS), we explored HIV-positive womens meaningful involvement in the design and delivery of HIV/AIDS services in British Columbia, Canada. In this article, we highlight the benefits and tensions that emerge as women traverse multiple roles as service users and service providers within their care communities, and the impact this has on their access to care and overall health.

“Why are you pregnant? What were you thinking?”: How women navigate experiences of HIV-related stigma in medical settings during pregnancy and birth

ABSTRACT Having children is a growing reality for women living with HIV in Canada. It is imperative to understand and respond to women’s unique experiences and psychosocial challenges during pregnancy and as mothers including HIV-related stigma. This qualitative study used a narrative methodological approach to understand women’s experiences of HIV-related stigma as they navigate health services in pregnancy (n = 66) and early postpartum (n = 64). Narratives of women living with HIV expose the spaces where stigmatizing practices emerge as women seek perinatal care and support, as well as highlight the relationship between HIV-related stigma and disclosure, and the impact this has on women’s pregnancy and birthing experiences.

Cohort profile: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS)

Globally, women are at increased vulnerability to HIV due to biological, social, structural, and political reasons. Women living with HIV also experience unique issues related to their medical and social healthcare, which makes a clinical care model specific to their needs worthy of exploration. Furthermore, there is a dearth of research specific to women living with HIV. Research for this population has often been narrowly focused on pregnancy-related issues without considering their complex structural inequalities, social roles, and healthcare and biological needs. For these reasons, we have come together, as researchers, clinicians and community members in Canada, to develop the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) to investigate the concept of women-centred HIV care (WCHC) and its impact on the overall, HIV, women’s, mental, sexual, and reproductive health outcomes of women living with HIV. Here, we present the CHIWOS cohort profile, which describes the cohort and presents preliminary findings related to perceived WCHC. CHIWOS is a prospective, observational cohort study of women living with HIV in British Columbia (BC), Ontario, and Quebec. Two additional Canadian provinces, Saskatchewan and Manitoba, will join the cohort in 2018. Using community-based research principles, CHIWOS engages women living with HIV throughout the entire research process meeting the requirements of the ‘Greater Involvement of People living with HIV/AIDS’. Study data are collected through an interviewer-administered questionnaire that uses a web-based platform. From August 2013 to May 2015, a total of 1422 women living with HIV in BC, Ontario, and Quebec were enrolled and completed the baseline visit. Follow-up interviews are being conducted at 18-month intervals. Of the 1422 participants at baseline, 356 were from BC (25%), 713 from Ontario (50%), 353 from Quebec (25%). The median age of the participants at baseline was 43 years (range, 16–74). 22% identified as Indigenous, 30% as African, Caribbean or Black, 41% as Caucasian/White, and 7% as other ethnicities. Overall, 83% of women were taking antiretroviral therapy at the time of the baseline interview and of them, 87% reported an undetectable viral load. Of the 1326 women who received HIV medical care in the previous year and responded to corresponding questions, 57% (95% CI: 54%-60%) perceived that the care they received from their primary HIV doctor had been women-centred. There were provincial and age differences among women who indicated that they received WCHC versus not; women from BC or Ontario were more likely to report WCHC compared to participants in Quebec. They were also more likely to be younger. CHIWOS will be an important tool to develop care models specific for women living with HIV. Moreover, CHIWOS is collecting extensive information on socio-demographics, social determinants of health, psychological factors, and sexual and reproductive health and offers an important platform to answer many relevant research questions for and with women living with HIV. Information on the cohort can be found on the study website (http://www.chiwos.ca).

A House is not a Home: The Housing Experiences of African and Caribbean Mothers Living with HIV

HIV-positive mothers living in Toronto, ON, face myriad economic and social challenges that put them at risk for housing instability and homelessness. These challenges are exacerbated for mothers from African and Caribbean communities as they navigate a web of shelter, housing, health care and social care systems that do not adequately address their social positioning as HIV-positive and racialized mothers. To date, there is a dearth of research that has taken a cultural, ethnoracial and gendered lens to explore these issues, and consequently, little is known about their experiences of housing instability as it intersects with issues related to motherhood, poverty, sexism, racism, immigration status and HIV-related stigma and discrimination. This paper presents findings from the HIV, Housing and Families community-based research study and highlights the unique and complex housing issues African and Caribbean mothers facing by living with HIV in Toronto. Implications for policy and practice are also discussed.