'More of the same, but worse than before': A qualitative study of the challenges encountered by people who use drugs in Nova Scotia, Canada during COVID-19.

BACKGROUND: To learn about the experiences of people who use drugs, specifically opioids, in the Halifax Regional Municipality (HRM), in Nova Scotia, Canada during the COVID-19 pandemic through qualitative interviews with people who use drugs and healthcare providers (HCP). This study took place within the HRM, a municipality of 448,500 people [1]. During the pandemic many critical services were interrupted while overdose events increased. We wanted to understand the experiences of people who use drugs as well as their HCPs during the first year of the pandemic. METHODOLOGY: We conducted a qualitative study using semi-structured interviews with 13 people who use drugs and 6 HCPs, including physicians who work in addiction medicine (3), a pharmacist, a nurse, and a community-based opioid agonist therapy (OAT) program staff member. Participants were recruited within HRM. Interviews were held via phone or videoconference due to social distancing directives. Interviews focused on the challenges people who use drugs and HCPs faced during the pandemic as well as elicited perspectives on a safe supply of drugs and the associated barriers and facilitators to the provision of a safe supply. RESULTS: Of the 13 people who use drugs who participated in this study, ages ranged from 21-55 years (mean 40). Individuals had spent on average 17 years in HRM. Most people who use drugs (85%, n = 11) utilized income assistance, the Canadian Emergency Response Benefit, or disability support. Many had experienced homelessness (85%, n = 11) and almost half (46%, n = 6) were currently precariously housed in the shelter system. The main themes among interviews (people who use drugs and HCPs) were housing, accessing healthcare and community services, shifts in the drug supply, and perspectives on safe supply. CONCLUSIONS: We identified several challenges that people who use drugs face in general, but especially during the COVID-19 pandemic. Access to services, housing support, and interventions to use safely at home were limited. As many challenges faced by people who use drugs exist outside of COVID-19, we concluded that the formal and informal interventions and changes in practice that were made to support people who use drugs should be sustained well past the end of the pandemic. The need for enhanced community supports and a safe supply of drugs, despite its complicated nature, is essential for the health and safety of people who use drugs in HRM, especially during COVID-19.

Substitute consent practices in the face of uncertainty: a survey of Canadian researchers in aging.

BACKGROUND: In Canada and elsewhere, research policies require researchers to secure consent from a legally authorized representative (LAR) for prospective participants unable to consent. Few jurisdictions, however, offer a clear legislative basis for LAR identification. We investigated Canadian researchers' practices regarding the involvement of decisionally incapacitated participants and tested whether reported practices were associated with (1) researchers' understanding of the law on third-party authorization of research and (2) their comfort with allowing a family member to consent on behalf of an incapacitated relative. METHODS: We surveyed researchers in aging from four Canadian provinces about their practices with prospective participants deemed incapable of consent, their understanding of relevant law, and comfort with family consent for research purposes. Understanding and comfort were measured with research vignettes that briefly described hypothetical studies in which an adult who lacks the capacity to consent was invited to participate. RESULTS: Many respondents reported soliciting consent from a family member (45.7% for low-risk studies and 10.7% for serious risks studies), even in jurisdictions where such authority is uncertain at law. Researchers' tendency to solicit family consent was associated with their comfort in doing so, but not with their understanding of the law on substitute consent for research. CONCLUSIONS: Findings underscore the need to clarify who may authorize an incapacitated adult's participation in research. Meanwhile, people should inform their relatives of their desire to participate or not in research in the event of incapacity, given researchers' tendency to turn to family for consent, even where not supported by law.

Protecting rights and building capacities: challenges to global mental health policy in light of the convention on the rights of persons with disabilities.

The World Health Organization (WHO) has identified mental health as a priority for global health promotion and international development to be targeted through promulgation of evidence-based medical practices, health systems reform, and respect for human rights. Yet these overlapping strategies are marked by tensions as the historical primacy of expert-led initiatives is increasingly subject to challenge by new social movements - in particular, disabled persons' organizations (DPOs). These tensions come into focus upon situating the WHO's mental health policy initiatives in light of certain controversies arising under the Convention on the Rights of Persons with Disabilities (CRPD), particularly as it applies to persons with mental (psychosocial) disabilities. I examine two such controversies - concerning, respectively, the legitimacy of involuntary psychiatric interventions and the legitimacy of regimes of substitute decision-making. These controversies illustrate the radical challenges to global and domestic mental health policy that have gained new momentum through the participation of DPOs in the CRPD process. At the same time, they illustrate the need for ongoing, inclusive forums for deliberation at the nexus of mental health policy and human rights, aimed at enabling human flourishing within a framework of respect for diversity.

Incapacity in Canada: review of laws and policies on research involving decisionally impaired adults.

OBJECTIVES: In Canada, as in the United States, the legal frameworks governing research involving adults incapable of providing informed consent are beset by gaps and ambiguities. In both countries, federal laws and policies relevant to the regulation of research involving decisionally incapable adults interact in complex ways with provincial or state laws. To alert researchers to these complexities and to urge law reform, this review provides a comprehensive account of the federal and provincial/ territorial legal frameworks relevant to research involving decisionally incapable adults in Canada. DESIGN: We identified the federal and provincial/territorial laws and policies pertinent to this review by updating previous work on substitute decision-making about research in Canada and then performing keyword searches on a Canadian legal information database (CanLii) to identify further laws of relevance. Our analysis of identified laws focused on three questions: 1) What (if any) preconditions-including permissible risk and/or benefit thresholds-are imposed on research involving persons who lack capacity to consent? 2) What provisions (if any) are in place for identification of the legally authorized representative for research decision making? and 3) What factors, if any, are stipulated as mandatory relevant considerations for the legally authorized representative's decision-making process? RESULTS: Across Canada, laws relating to substitute decision-making are highly variable, and often ambiguous or uncertain, on each of the matters targeted in our analysis. CONCLUSIONS: Researchers and research institutions should be aware of federal and provincial/territorial legal requirements for research involving persons who lack capacity to consent in Canada. The relevant governments should undertake coordinated efforts at law reform to clarify, and potentially harmonize, these requirements.

Understanding "elder abuse and neglect": a critique of assumptions underpinning responses to the mistreatment and neglect of older people.

This article provides an overview of the ways in which the mistreatment and neglect of older people have come to be understood as a social problem, one which is underpinned by a variety of substantive and theoretical assumptions. It connects the process of conceptualizing elder abuse and neglect to political-economic and social evolution. The authors draw on a review of the literature, government sources, interest group websites, and their own research to provide a critical commentary illustrating how these understandings have become manifest in legislation, policies, and programs pertaining to "elder abuse and neglect" in Canada. Suggestions are provided for changes in direction for policies, programs, and research.

Are Canadians providing advance directives about health care and research participation in the event of decisional incapacity?

OBJECTIVE: Advance planning for health care and research participation has been promoted as a mechanism to retain some control over one's life, and ease substitute decision making, in the event of decisional incapacity. Limited data are available on Canadians' current advance planning activities. We conducted a postal survey to estimate the frequency with which Canadians communicate their preferences about health care and research should they become incapacitated. METHOD: We surveyed 5 populations (older adults, informal caregivers, physicians, researchers in aging, and research ethics board members) from Nova Scotia, Ontario, Alberta, and British Columbia. We asked respondents whether they had expressed their preferences regarding a substitute decision maker, health care, and research participation in the event of incapacity. RESULTS: Two out of 3 respondents (62.0%; 95% CI 59.1% to 64.8%) had been advised to communicate their health care preferences in advance. Oral expression of wishes was reported by 69.1% of respondents (95% CI 66.8% to 71.3%), and written expression by 46.7% (95% CI 44.3% to 49.2%). Among respondents who had expressed wishes in advance (orally or in writing), 91.2% had chosen a substitute decision maker, 80.9% had voiced health care preferences, and 19.5% had voiced preferences regarding research participation. Having been advised to communicate wishes was a strong predictor of the likelihood of having done so. CONCLUSIONS: Advance planning has increased over the last 2 decades in Canada. Nonetheless, further efforts are needed to encourage Canadians to voice their health care and research preferences in the event of incapacity. Physicians are well situated to promote advance planning to Canadians.

Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

BACKGROUND: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile. METHODS: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario. RESULTS: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent. CONCLUSIONS: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

Comparison of provincial and territorial legislation governing substitute consent for research.

In Canada, provincial and territorial laws address circumstances in which a substitute decision-maker may be appointed for an adult deemed legally incapable of making decisions in one or more areas of life. We searched for provincial and territorial laws that explicitly address substitute decision-making about research participation, and found significant differences among Canadian jurisdictions. In some provinces and territories there is no direct statutory guidance on the issue. Differences among jurisdictions that address substitute decision-making about research in legislation include whether judicial intervention is required to authorize the substitute decision-maker, whether any advance directive in place must explicitly authorize the decision about research in order for a proxy to consent, and how risk and benefit thresholds beyond which substitute consent to research is prohibited are articulated. It is imperative that government, researchers, and the Canadian public revisit the principles underpinning substitute decision-making about research in light of national and international norms, in order to lend clarity and consistency to this area of law and research practice.