Short Communication: Lived experience perspectives on genetic testing for a rare eye disease.

This qualitative study explored the motivators and barriers for genetic testing for individuals with aniridia. Semi-structured interviews were conducted with 8 participants. The main findings highlighted the complex and interrelated factors involved in the decision-making process, including family planning, learning about the specific pathogenic variant of the disease and having access to genetic testing. Benefits and potential risks of genetic testing for aniridia were also discussed. For participants, gaining knowledge about their condition was perceived as a benefit, while administrative issues and concerns around privacy were identified as risks. Increased access to quality information about genetic testing and to the service and associated resources are needed to better support people living with aniridia.

Lay social workers implementing a task-sharing approach to managing depression in Vietnam.

BACKGROUND: While depression is a leading contributor to burden of disease in Vietnam, there is a critical gap in depression care due to the shortage of mental health specialists and extremely limited mental health services in general health care settings. We have previously reported the effectiveness of a supported self-management (SSM) task-sharing intervention for depression, delivered by social collaborators (lay social workers). The purpose of this study was to identify factors influencing the effectiveness of delivery of SSM by social collaborators and delineate areas for further attention that are relevant for scale-up. METHODS: A hundred and ten (110) key informant interviews were conducted with three stakeholder groups (patients, social collaborators, experts) from eight provinces in Vietnam. Participants were identified through records from a recently completed randomized trial that showed the effectiveness of SSM in community-based settings in Vietnam. Qualitative descriptive methods and thematic analysis were used to examine the interviews. A coding framework and corresponding themes were developed deductively, based on the findings from the randomized trial and the literature, and through inductive analysis, to describe the contextual factors that impacted the social collaborators' role in successfully implementing the SSM intervention. RESULTS: Our analysis identified the following benefits of working with social collaborators: (1) increased awareness of mental health in the family and community; (2) reduced stigma; (3) a better understanding that depression is treatable; (4) increased help-seeking; and (5) improved access to care. There were also significant challenges, including social collaborator characteristics (age, education, pre-existing training and skills) and contextual factors influencing their work (roles and responsibilities, training, compensation, support from government). CONCLUSIONS: Engaging social collaborators in the delivery of SSM in the community can help fill a critical gap in depression care in Vietnam. However, several contextual challenges that are an impediment to increased engagement and sustainable integration into health and social systems need to be resolved through policy change to regulate their practice, define their scope of work, and provide adequate remuneration.

The perspectives of people who use drugs regarding short term involuntary substance use care for severe substance use disorders.

BACKGROUND: In the Canadian Province of British Columbia (BC), the BC Mental Health Act permits involuntary care for treating mental disorders. However, the Act has also been applied to provide involuntary care to individuals with a primary substance use disorder, in the absence of specific guidelines and legislation, and with insufficient understanding of perspectives of people who use drugs (PWUD) regarding this approach. METHODS: As part of a larger mixed-methods research project providing an overview of involuntary care for severe substance use disorders in BC, three focus groups were convened with: PWUD, families and caregivers, and Indigenous community stakeholders. This analysis examines perspectives from the focus group of PWUD, consisting of nine participants from local and regional drug user and advocacy organizations regarding involuntary care. A qualitative descriptive approach and thematic analysis were conducted, using a coding framework developed deductively and inductively, and participant perspectives were interpreted drawing on problematization theory. RESULTS: Participants did not endorse the use of involuntary care, instead emphasizing significant changes were needed to address shortcomings of the wider voluntary care system. When asked to conceptualize what an acceptable involuntary care scenario might look like (under hypothetical and ideal conditions), participants recommended it should include: individual control and autonomy, peer advocacy in decision-making, and elimination of police and criminal justice system involvement from treatment encounters. Participants saw involuntary care to be an inappropriate approach given the shortcomings of the current system, noting also problems inherent in its use to manage severe SUDs and imminent harm, and prioritized alternate approaches to offsetting risks. CONCLUSION: Improving voluntary care for substance use, along with addressing the social determinants of health that put individuals at risk of problematic substance use and harm, were prioritized in participant perspectives. Participant comments regarding the use of involuntary care bring forward alternate solutions in the context of the opioid overdose crisis, and a reconceptualization of the 'problem' of managing severe substance use disorders.

Is supported self-management for depression effective for adults in community-based settings in Vietnam?: a modified stepped-wedge cluster randomized controlled trial.

BACKGROUND: This study tested the effectiveness of a supported self-management (SSM) intervention to reduce symptoms of depression among adults compared with enhanced treatment as usual in community-based and primary care settings in Vietnam. METHODS: The cluster randomized trial included 376 adults in 32 communes in eight provinces. Eligible participants scored > 7 on the SRQ-20 depression scale. Patients with severe symptoms were excluded and referred to tertiary care. Randomization took place at the commune level. The immediate intervention group included 16 communes with 190 participants and the delayed group included 16 communes with 186 participants. Participants in communes randomized to the immediate intervention group received a two-month course of SSM, consisting of a workbook and supportive coaching. Those in communes randomized to the delayed group received enhanced treatment as usual and, for ethical purposes, received the SSM intervention after 4 months. The primary outcome is the effect of SSM on reduction in depression scores as indicated by a reduced proportion of participants with SRQ-20 scores > 7 at 2 months after commencement of SSM intervention. Blinding was not possible during intervention delivery but outcome assessors were blinded. Analysis was intention-to-treat. RESULTS: At 2 months, 26.4% of the intervention group and 42.3% of the delayed group had SRQ-20 scores > 7. The adjusted odds ratio of having depression between the intervention and control was 0.42 (p < 0.0001), 95% CI (0.28, 0.63). Receiving the intervention thus reduces the odds of having depression by 58%, compared with receiving the control after 2 months of treatment. No adverse events were reported. CONCLUSIONS: Results suggest that SSM is effective for decreasing depression symptoms among adults in community-based settings in Vietnam.Trial Registration This trial is registered at ClinicalTrials.gov, number NCT03001063.

Reader comments to media reports on psychiatric neurosurgery: past history casts shadows on the future.

BACKGROUND: Comments made by readers in response to news articles about current events can provide profound insights into public understanding of and perspectives on those events. Here, in follow up to a paper published last year in this journal, we examined reader comments to articles in newspapers and magazines about neurosurgical interventions for treating psychiatric illness. METHOD: We conducted a thematic analysis of these comments (N = 662 coded units of data) posted in response to 115 newspaper and magazine articles from four countries (Canada, USA, Germany, and Spain) between 2006 and 2017. The comments were coded using an iteratively refined coding scheme that was structured around four a priori categories based on results from the parent study and two new categories that emerged. RESULTS: We found many references to historical psychosurgery and mostly negative and pessimistic comments about ablative neurosurgical interventions. Comments to deep brain stimulation were more positive, and comments to optogenetics most controversial. We also found many expressions of distrust of medical professionals in the context of interventions on the brain and concerns about social and individual control. CONCLUSIONS: Overall, results suggest there is still much work to be done to raise public awareness about re-emerging and new neurosurgical interventions. Balanced discussion is needed if these approaches are to find a place in health care for psychiatric disorders.

The re-emergence of psychiatric neurosurgery: insights from a cross-national study of newspaper and magazine coverage.

BACKGROUND: Surgical approaches to treat psychiatric disorders have made a comeback. News media plays an essential role in exposing the public to trends in health care such as the re-emergence of therapeutic interventions in psychiatric neurosurgery that were set aside for decades, and in shaping attitudes and acceptance to them. METHOD: We conducted an analysis of media articles covering all types of psychiatric neurosurgery published in Canada, USA, Germany, and Spain between the years 1960 and 2015. We applied both quantitative and qualitative methods to elucidate patterns of reporting for conditions, themes and tone, across geographic regions, time, and for type of intervention. RESULTS: Coverage of psychiatric neurosurgery has surged since 2001 and is largely consistent across the countries examined. It focuses on depression and deep brain stimulation, and is explicit about historical context. The tone of coverage becomes more positive for Canada, USA and Spain over time; the tone of coverage from Germany remains cautious. Identity and privacy are among the few ethical and philosophical issues raised, notably in the German press. CONCLUSIONS: The focused and optimistic attention to contemporary psychiatric neurosurgery in the media, but inattention to ethical issues, places an extra burden on functional neurosurgeons, psychiatrists, and other frontline health professionals to attend to queries from patients and policy makers about the full range of relevant emergent and emerging interventions and the mental health issues to which they may beneficially apply.