Treatment preferences of patients with relapsed and refractory multiple myeloma: a qualitative study.

BACKGROUND: Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients' lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them. METHODS: Qualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants' accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients' treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns. RESULTS: The interviews identified important side effects that had significant impacts on patients' lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients' priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities. CONCLUSIONS: RRMM and its treatments impact importantly on patients' quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens. IMPLICATIONS FOR CANCER SURVIVORS: A clear articulation of patient priorities can contribute to efforts to design treatment with patients' concerns in mind, thereby promoting a more patient-centered approach to care.

Decolonizing Scoping Review Methodologies for Literature With, for, and by Indigenous Peoples and the African Diaspora: Dialoguing With the Tensions.

This article summarizes our deepened understanding of decolonizing research with, for, and by Indigenous peoples and peoples of African descent that emerged from conducting a scoping review of the methodological literature and reflecting on our review process. Although our review identified decolonizing methodologies as a promising approach, we questioned if our scoping review process engaged in decolonizing knowing. To unpack the epistemological tensions between decolonizing knowing and Western ways of doing scoping reviews, we engaged in individual and collective reflective processes- dialoguing with the tensions-moving from individual immersion in the literature to transformative dialogues among the team. In reflecting upon our tensions with the scoping review process, themes that emerged included (a) ontological/epistemological disjunctures, (b) tensions with concepts and language, and (c) relationships with the literature and beyond. This reflexive process provides valuable insight into ways in which review methods might be made a decolonizing research experience.

Clinical ethics issues in HIV care in Canada: an institutional ethnographic study.

BACKGROUND: This is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups. METHODS: We used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical issues in the clinics, and to understand how health care providers and clinic clients manage and resolve these issues. RESULTS: We found that health care providers and clinic clients have developed work processes for managing ethical issues of various types: conflicts between client-autonomy and public health priorities ("treatment as prevention"), difficulties associated with the criminalization of nondisclosure of HIV positive status, challenges with non-adherence to HIV treatment, the protection of confidentiality, barriers to treatment access, and negative social determinants of health and well-being. CONCLUSIONS: Some ethical issues resulted from structural disadvantages experienced by clinic clients. The most striking findings in our study were the negative social determinants of health and well-being experienced by some clinic clients - such as experiences of violence and trauma, poverty, racism, colonization, homelessness, and other factors affecting well-being such as problematic substance use. These negative determinants were at the root of other ethical issues, and are themselves of ethical concern.

The ethical case for providing cost-free access to lifesaving HIV medications in Canada: Implications of a qualitative study.

Antiretroviral therapy for HIV can be expensive if paid for out of pocket. In Canada, there are a variety of federal, provincial, and private prescription drug plans that lower the cost of these lifesaving medications for people living with HIV, and in some cases, these plans result in cost-free access. However, many people living with HIV must contend with high deductibles for their antiretroviral therapies, and many experience difficulty managing the administrative requirements of their drug plans. This article comments on some of the results of a qualitative study into ethical issues in HIV care. Access to antiretrovirals was a theme that emerged in this study. We argue on ethical grounds that provincial drug plans should guarantee cost-free access to antiretroviral therapies for people living with HIV with minimal administrative requirements.

Constructing victimhood in Canadian news coverage of HIV criminalisation: Claims-making activities and HIV non-disclosure.

A robust body of research has documented the representational politics of news coverage in their depiction of HIV-positive people charged for HIV non-disclosure. News media representations of HIV-negative sex partners in cases of HIV non-disclosure have received far less scholarly attention. Adopting a social constructionist perspective, this article identifies how "victims" of HIV non-disclosure are constructed in news media. It is based on a dataset consisting of 341 news articles on HIV non-disclosure from 14 English Canadian newspapers across the political spectrum. Victims of HIV non-disclosure were constructed as: (1) suffering horribly, (2) morally pure and virtuous, (3) vengeful and (4) agentic and responsible for their situation. We consider how such constructions are enmeshed within arguments that establish or reject HIV non-disclosure as a social problem. We then discuss the ways these constructions and the assumptions upon which they are based reflect broader discussions on the severity of HIV, the responsibility for HIV risk and exposure, and the contestations over the very nature of the social problem of HIV non-disclosure. Constructions of victims that uphold HIV criminalisation have relied on assumptions of HIV as a deadly disease but de-emphasise personal responsibility for HIV risk. By contrast, constructions of victims that, in effect, oppose HIV criminalisation have tended to minimise the harms of HIV and invoke personal responsibility for HIV risk. We suggest that both proponents and opponents of HIV criminalisation engage in the "ideology of victimhood" and thus participate in and reinforce what Best (1997) termed, the "victim industry."

De nombreux travaux de recherche ont mis en évidence les politiques de représentation de la couverture médiatique dans leur représentation des personnes séropositives accusées de ne pas avoir révélé leur séropositivité. Les représentations médiatiques des partenaires sexuels séronégatifs dans les cas de non-divulgation du VIH ont reçu beaucoup moins d'attention de la part des chercheurs. Adoptant une perspective constructionniste sociale, cet article identifie comment les « victimes ¼ de la non-divulgation du VIH sont construites dans les médias d'information. Elle est basée sur un ensemble de données comprenant 341 articles de presse sur la non-divulgation du VIH provenant de 14 journaux canadiens anglais de tous les horizons politiques. Les victimes de la non-divulgation du VIH ont été construites comme suit : (1) souffrant horriblement, (2) moralement pures et vertueuses, (3) vengeresses, et (4) agissantes et responsables de leur situation. Nous examinons la manière dont ces constructions sont imbriquées dans les arguments qui établissent ou rejettent la non-divulgation du VIH en tant que problème social. Les constructions de victimes qui soutiennent la criminalisation du VIH s'appuient sur des hypothèses selon lesquelles le VIH est une maladie mortelle, mais minimisent la responsabilité personnelle face au risque de VIH. En revanche, les conceptions des victimes qui s'opposent à la criminalisation du VIH ont tendance à minimiser les effets néfastes du VIH et à invoquer la responsabilité personnelle dans le risque d'infection. Nous suggérons que les partisans et les adversaires de la criminalisation du VIH s'engagent dans «l'idéologie de la victimisation¼ et participent ainsi à ce que Best (1997) a appelé «l'industrie de la victimisation et la renforcent.

Counselling, case management and health promotion for people living with HIV/AIDS: an overview of systematic reviews.

Our objective was to identify all existing systematic reviews related to counselling, case management and health promotion for people living with HIV/AIDS. For the reviews identified, we assessed the quality and local applicability to support evidence-informed policy and practice. We searched 12 electronic databases and two reviewers independently assessed the 5,398 references retrieved from our searches and included 18 systematic reviews. Each review was categorized according to the topic(s) addressed, quality appraised and summarized by extracting key messages, the year searches were last completed and the countries in which included studies were conducted. Twelve reviews address topics related to counselling and case management (mean quality score of 6.5/11). Eight reviews (mean quality score of 6/11) address topics related to health promotion (two address both domains). The findings from this overview of systematic reviews provide a useful resource for supporting the development and delivery of evidence-informed support services in community settings.

"It's not rocket science, what I do": Self-directed harm reduction strategies among drug using ethno-racially diverse gay and bisexual men.

BACKGROUND: Research on harm reduction has typically focused on broad-based or organisational strategies such as needle exchange and opiate substitute programmes. Less attention has been paid to the self-directed harm reduction practices of substance users themselves. Few studies have focused on sexual minority populations such as gay and bisexual men and fewer still on the marginalised groups that constitute these populations. This paper identifies self-directed harm reduction strategies among substance using ethno-racially diverse gay and bisexual men. METHODS: This article presents findings from the Party Drugs Study in Toronto's gay dance club scene, a community-based qualitative study in Toronto, Canada. We present a thematic analysis of interviews with 43 gay and bisexual men from diverse ethno-racial backgrounds about their substance use in the gay dance club scene. FINDINGS: We identify five self-directed harm reduction strategies: rationing, controlling or avoiding mixing, controlling quality, maintaining a healthy lifestyle, and following guidelines during substance use. CONCLUSIONS: We discuss our findings in relation to prior research and to critical theory. We suggest that drug users' awareness of possible harm, and their personal investment in harm reduction, constitute a viable platform from which community-based and public health organisations may promote and strengthen harm reduction among gay and bisexual men from ethno-racially diverse backgrounds.

Impact of an indoor smoking ban on bar workers' exposure to secondhand smoke.

OBJECTIVE: To evaluate the impact of an indoor smoke-free bylaw in Toronto, Ontario, implemented June 2004. METHODS: We used a pre-post comparison design to assess secondhand smoke (SHS) exposure among 79 eligible bar workers in Toronto, Ontario (bylaw enacted), and 49 eligible bar workers in a control community, Windsor, Ontario (no bylaw change), at four times: preban, and 1, 2, and 9 months postban. RESULTS: SHS exposure time and urinary cotinine level were substantially reduced in Toronto bar workers immediately after the ban by 94% (from 7.8 to 0.5 hours) and 68% (from 24.2 to 7.8 ng/mL), respectively. The reduction was sustained throughout follow-up. There was no change among Windsor bar workers before and after the ban. CONCLUSIONS: Compliance with the ban was high, and the ban led to a substantial reduction in SHS exposure.