"They're all struggling as well": social and economic barriers and facilitators to self-managing chronic illness among marginalized people who use drugs.

PURPOSE: Self-management is recommended for addressing chronic conditions, and self-management programmes improve health behaviours and outcomes. However, social and economic factors have been neglected in self-management research, despite their relevance for marginalized groups. Thus, we aimed to explore barriers and facilitators that influence self-management among socioeconomically marginalized people who use drugs (PWUD). METHODS: Using community-based participatory methods, we developed a qualitative interview guide and conducted peer-led recruitment. Participants were admitted into the study after self-identifying as using non-prescribed drugs, having a chronic health issue, and experiencing socioeconomic marginalization. Data were analysed using reflexive thematic analysis, taking a relational autonomy lens. RESULTS: Participants highlighted substantial barriers to managing their health issues, mostly stemming from their social and economic environments, such as unstable housing, low income, lack of supportive social networks, and negative healthcare experiences. Participants also described how their ability to self-manage their chronic conditions benefited from specific aspects of social interactions, including close relationships, community connectedness, and engaging in peer support. CONCLUSIONS: Our findings suggest that structural interventions are needed to support self-management among marginalized PWUD, especially stable housing. Self-management supports for PWUD would benefit from including a range of low-barrier community-based options, peer work opportunities, and advocacy for needs.

"The Drug Use Unfortunately isn't all Bad": Chronic Disease Self-Management Complexity and Strategy Among Marginalized People Who Use Drugs.

Self-management programs improve health outcomes and self-management is recommended for chronic conditions. Yet chronic disease self-management supports have rarely been applied to people who use drugs (PWUD). Thus, our objective was to explore self-management experiences among marginalized PWUD. We used community-based participatory methods and conducted qualitative interviews. Participants self-identified as having long-term and past year experience using non-prescribed drugs, one other chronic condition, and socioeconomic marginalization. We analyzed the data using reflexive thematic analysis. Although many participants considered drug use a chronic health issue, self-medicating with non-prescribed drugs was also a key self-management strategy to address other health issues. Participants also described numerous other strategies, including cognitive and behavioral tactics. These findings highlight the need for a safe supply of pharmaceutical-grade drugs to support self-management among marginalized PWUD. Self-management supports should also be tailored to address relevant topics (e.g., harm reduction, withdrawal), include creative activities, and not hinder PWUD's agency.

Equitable Timing of HIV Diagnosis Prior to Pregnancy: A Canadian Perspective.

Initiating antiretrovirals prior to conception leads to a negligible risk of perinatal transmission. This study aimed to determine the timing of HIV diagnosis among pregnant women with HIV in Ontario. A retrospective population-level cohort study using linked health administrative databases was conducted to establish maternal HIV status and timing of HIV diagnosis of all women living with HIV who gave birth in 2006-2018. The majority of the 1012 women living with HIV who gave birth in Ontario were diagnosed prior to pregnancy (87.9%); however, many were not (12.1%). Among those diagnosed during pregnancy, only 23% were diagnosed in the first trimester. While HIV screening tests are being well directed towards young women, several women still enter pregnancy undiagnosed and are not diagnosed early. This calls for a continuous effort to promote universal pre-conception screening and to use HIV point-of-care testing for at-risk pregnant women and those presenting late to prenatal care.

Patterns of cesarean birth among women living with HIV in Ontario: A cross-sectional, population-level study.

BACKGROUND: In Canada, as is found globally, women of reproductive age are a growing demographic of persons living with HIV. Combination antiretroviral therapy (cART) treatment enables women living with HIV (WLWH) to become pregnant without perinatal transmission, and they are increasingly planning to become pregnant. Since 2014, Canadian guidelines no longer recommend routine elective cesarean birth (CB) for women who are virally suppressed and receiving cART. It is unknown whether their obstetric care has changed since this update. Our objective was to describe trends in cesarean births among WLWH in Ontario, Canada, over a 12-year period. METHODS: Our research is co-led and codesigned with WLWH. We conducted a retrospective population-level cohort study using linked health administrative databases at ICES (formally, the Institute for Clinical and Evaluative Sciences). Participants were all women who gave birth in Ontario, between 2006/07 and 2017/18. We assessed their intrapartum characteristics and used multivariable regression to determine an association between HIV status and CB, controlling for sociodemographic and clinical variables. RESULTS: Since 2014, the overall proportion of CB among WLWH remained stable and was higher than among women without HIV (39.9% vs 29.0%, P < 0.001). In addition, the proportion of primary CB decreased between 2006 and 2010 and between 2014 and 2018 (28.5%-19.3%), whereas the proportion of repeat CB increased (13.1%-20.5%, P = 0.013). CONCLUSIONS: Because of decreasing HIV-related indications for CB, more practitioners may be following the guidelines for first-time mothers. Currently, no guidelines exist for care of WLWH with a previous CB, and opportunities for vaginal birth may be missed in this population.

Establishing need and population priorities to improve the health of homeless and vulnerably housed women, youth, and men: A Delphi consensus study.

BACKGROUND: Homelessness is one of the most disabling and precarious living conditions. The objective of this Delphi consensus study was to identify priority needs and at-risk population subgroups among homeless and vulnerably housed people to guide the development of a more responsive and person-centred clinical practice guideline. METHODS: We used a literature review and expert working group to produce an initial list of needs and at-risk subgroups of homeless and vulnerably housed populations. We then followed a modified Delphi consensus method, asking expert health professionals, using electronic surveys, and persons with lived experience of homelessness, using oral surveys, to prioritize needs and at-risk sub-populations across Canada. Criteria for ranking included potential for impact, extent of inequities and burden of illness. We set ratings of ≥ 60% to determine consensus over three rounds of surveys. FINDINGS: Eighty four health professionals and 76 persons with lived experience of homelessness participated from across Canada, achieving an overall 73% response rate. The participants identified priority needs including mental health and addiction care, facilitating access to permanent housing, facilitating access to income support and case management/care coordination. Participants also ranked specific homeless sub-populations in need of additional research including: Indigenous Peoples (First Nations, Métis, and Inuit); youth, women and families; people with acquired brain injury, intellectual or physical disabilities; and refugees and other migrants. INTERPRETATION: The inclusion of the perspectives of both expert health professionals and people with lived experience of homelessness provided validity in identifying real-world needs to guide systematic reviews in four key areas according to priority needs, as well as launch a number of working groups to explore how to adapt interventions for specific at-risk populations, to create evidence-based guidelines.

Creating Clinical Cohorts: Challenges Encountered in Two Canadian Provinces.

In 2013, the Living with HIV (LHIV) Innovation team established clinical cohorts of people living with HIV in Manitoba and Newfoundland and Labrador, and they linked the data to provincial health administrative databases. Access to these data enabled researchers to conduct studies across provincial borders; contribute to a national dialogue on HIV health system performance; and give recommendations for evidence-based healthcare, health policy and public health. However, research funding is episodic; maintaining cohorts requires stable funding. We support the establishment of a cross-jurisdictional approach to facilitate streamlined data collection and linkage without interruption and to allow for meaningful analysis in order to inform national policies.

Evolving Toward Shared HIV Care Using the Champlain BASE eConsult Service.

Background. Electronic consultation (eConsultation) is a potential strategy to improve access to specialist expertise and facilitate collaborative care models. The Champlain BASE eConsult service allows for asynchronous communication between primary care providers (PCP) and specialists on a secure, web-based system. HIV experts accessible include HIV physician specialists, HIV pharmacists, and social workers with expertise in HIV. Objective. This study aims to describe the use, value, and utility of this eConsultation service in the care of people living with HIV and to characterize the common question types and clinical topics asked by PCPs. Methods. We analyzed the data from eConsults sent to the HIV specialty group in Ontario's Champlain Local Health Integration Network between February 2015 and December 2017. Usage data and close-out survey responses were analyzed using descriptive statistics, eConsults were classified using a predefined list of validated taxonomy, and a thematic analysis was performed on the consultation logs to identify common clinical themes. Results. Among the 46 eConsults, the most common question type related to drug treatment (58.7%, n = 27) and management (19.6%, n = 9). The main clinical themes involved the care of significant complexities in people living with HIV, such as comorbidities and drug interactions, and suggestions of coordinated patient care. As well, eConsult was used for advice regarding pre-exposure prophylaxis for HIV-negative patients at risk of HIV infection. PCPs highly valued the eConsult service (average rating 4.8/5). Conclusion. Overall, this study demonstrates that eConsult provides an efficient and valuable service to PCPs caring for patients living with or at risk for HIV by improving access to HIV specialists and facilitating the delivery of team-based comprehensive care.

How the delivery of HIV care in Canada aligns with the Chronic Care Model: A qualitative study.

With the advent of continuous antiretroviral therapy, HIV has become a complex chronic, rather than acute, condition. The Chronic Care Model (CCM) provides an integrated approach to the delivery of care for people with chronic conditions that could therefore be applied to the delivery of care for people living with HIV. Our objective was to assess the alignment of HIV care settings with the CCM. We conducted a mixed methods study to explore structures, organization and care processes of Canadian HIV care settings. The quantitative results of phase one are published elsewhere. For phase two, we conducted semi-structured interviews with key informants from 12 HIV care settings across Canada. Irrespective of composition of the care setting or its location, HIV care in Canada is well aligned with several components of the CCM, most prominently in the areas of linkage to community resources and delivery system design with inter-professional team-based care. We propose the need for improvements in the availability of electronic clinical information systems and self-management support services to support better care delivery and health outcomes among people living with HIV in Canada.

Canadian HIV Care Settings as Patient-Centered Medical Homes (PCMHs).

PURPOSE: For people living with HIV (PLWH) using continuous antiretroviral therapy, HIV is now a complex chronic condition often managed in primary care settings. The patient-centered medical home (PCMH) is a model to deliver comprehensive, coordinated, and integrated primary care that promotes collaboration between primary and specialist care and allied services. The study assessed how both Canadian primary and specialist HIV care settings align with the PCMH. METHODS: Mixed-methods surveys and interviews with providers in Canadian HIV care settings. RESULTS: Twenty-two settings completed the survey, 12 of which participated in follow-up interviews. Settings had a mean PCMH score of 8.06/12 (SD = 1.53), indicating the basic elements of each PCMH domain have been implemented. We found no significant differences between HIV primary care and specialist care settings. Continuous team-based healing relationships had the highest score (mean = 9.2; SD = 2.15), and quality improvement strategy had the lowest score (mean = 7.19; SD = 2.26). The themes that arose from the interviews were 1) endorsement of the domains of the PCMH by all settings, 2) organizational structures of settings located in hospitals facilitating the implementation of the PCMH through existing technology, patient advisory boards, and accessible services, and 3) dissonance between complex care needs and existing organizational structures in some settings, including limited clinic hours, lack of electronic medical records, and limited mental health services. CONCLUSIONS: HIV care in Canada is reasonably well aligned with the PCMH, irrespective of structure of settings. We propose the need for improvements in the use of electronic medical records, quality improvement strategies, and integration of mental health services to achieve better care delivery and health outcomes among PLWH in Canada.

The organizational attributes of HIV care delivery models in Canada: A cross-sectional study.

HIV treatment in Canada has rapidly progressed with the advent of new drug therapies and approaches to care. With this evolution, there is increasing interest in Canada in understanding the current delivery of HIV care, specifically where care is delivered, how, and by whom, to inform the design of care models required to meet the evolving needs of the population. We conducted a cross-sectional survey of Canadian care settings identified as delivering HIV care between June 2015 and January 2016. Given known potential differences in delivery approaches, we stratified settings as primary care or specialist settings, and described their structure, geographic location, populations served, health human resources, technological resources, and available clinical services. We received responses from 22 of 43 contacted care settings located in seven Canadian provinces (51.2% response rate). The total number of patients and HIV patients served by the participating settings was 38,060 and 17,678, respectively (mean number of HIV patients in primary care settings = 1,005, mean number of HIV patients in specialist care settings = 562). Settings were urban for 20 of the 22 (90.9%) clinics and 14 (63.6%) were entirely HIV focused. Primary care settings were more likely to offer preventative services (e.g., cervical smear, needle exchange, IUD insertion, chronic disease self-management program) than specialist settings. The study illustrates diversity in Canadian HIV care settings. All settings were team based, but primary care settings offered a broader range of preventative services and comprehensive access to mental health services, including addictions and peer support.

Patient activation among people living with HIV: a cross-sectional comparative analysis with people living with diabetes mellitus.

Standardized self-management supports are an integral part of care delivery for many chronic conditions. We used the validated Patient Activation Measure (PAM®) to assess level of engagement for self-management from a sample of 165 people living with HIV (PLWH) and 163 people with diabetes. We conducted multivariable logistic regression to assess associations between demographics and PAM® scores. PLWH had high levels of activation that were no different from those of people with diabetes (mean score = 67.2, SD = 14.2 versus 65.0, SD = 14.9, p = 0.183). After adjusting for patient characteristics, only being on disability compared to being employed or a student was associated with being less activated (AOR = 0.276, 95%CI = 0.103-0.742). Our findings highlight the potential for the implementation of existing standardized chronic disease self-management programs to enhance the care delivery for PLWH, with people on disability as potential target populations.

Assessing Timely Presentation to Care Among People Diagnosed with HIV During Hospital Admission: A Population-Based Study in Ontario, Canada.

Timely presentation to care for people newly diagnosed with HIV is critical to optimize health outcomes and reduce onward HIV transmission. Studies describing presentation to care following diagnosis during a hospital admission are lacking. We sought to assess the timeliness of presentation to care and to identify factors associated with delayed presentation. We conducted a population-level study using health administrative databases. Participants were all individuals older than 16 and newly diagnosed with HIV during hospital admission in Ontario, Canada, between April 1, 2007 and March 31, 2015. We used modified Poisson regression models to derive relative risk ratios for the association between sociodemographic and clinical variables and the presentation to out-patient HIV care by 90 days following hospital discharge. Among 372 patients who received a primary HIV diagnosis in hospital, 83.6% presented to care by 90 days. Following multivariable analysis, we did not find associations between patient sociodemographic or clinical characteristics and presentation to care by 90 days. In a secondary analysis of 483 patients diagnosed during hospitalization but for whom HIV was not recorded as the principal reason for admission, 73.1% presented to care by 90 days. Following multivariable adjustment, we found immigrants from countries with generalized HIV epidemics (RR 1.265, 95% CI 1.133-1.413) were more likely to present to care, whereas timely presentation was less likely for people with a mental health diagnosis (RR 0.817, 95% CI 0.742-0.898) and women (RR 0.748, 95% CI 0.559-1.001). Future work should evaluate mechanisms to facilitate presentation to care among these populations.

Results of implementation of a hospital-based strategy to reduce cesarean delivery among low-risk women in Canada.

OBJECTIVE: To assess the cesarean delivery (CD) rate among low-risk pregnancies before and after implementation of a hospital-based program in Canada. METHODS: A prospective before-and-after study was conducted to assess the effects of the CARE (CAesarean REduction) strategy, which was developed and implemented at Markham Stouffville Hospital, Toronto, ON, Canada, in 2010 to reduce CD among low-risk women. Hospital records were reviewed to identify changes in the proportions of CD performed during 12 months (April 2009-March 2010) before implementation of the CARE strategy versus 12 months after implementation (April 2012-March 2013) at Markham Stouffville Hospital and 36 hospitals of the same level in the same province. RESULTS: At the intervention hospital, 30.3% (964/3181) of women underwent CD in 2009-2010, compared with 26.4% (803/3045) in 2012-2013 (difference -3.9%, P<0.001). By contrast, no significant difference was recorded in control hospitals (28.1% [23 694/84 361] vs 28.2% [23 683/83 895]; difference 0.1%, P=0.5157). CONCLUSION: Implementation of the CARE strategy reduced rates of CD among the target population.