RESUMEN
Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting.
RESUMEN
BACKGROUND: For every suicide on the British railway network, at least six potential attempts are interrupted by front-line staff or rail commuters. However, the factors that maximise or hinder the likelihood and effectiveness of such interventions are poorly understood. AIMS: The aim of the current study was to shed light on the experience of intervening to prevent a suicide at a railway location, including how and why people intervene, and their feelings and reflections in the aftermath. METHOD: In-depth interviews were carried out with rail commuters (n = 11) and front-line railway staff (n = 10) who had intervened to stop a suicide by train. Data were analysed thematically. RESULTS: Participants had intervened to prevent suicide in several ways, both from afar (e.g. by calling a member of staff) and more directly (verbally or non-verbally), in some cases with no prior training or experience in suicide prevention, and often as a 'quick, gut reaction' given the limited time to intervene. In more 'reasoned' interventions, poor confidence and concerns around safety were the greatest barriers to action. Although often privy to their final outcome, most participants reflected positively on their intervention/s, stressing the importance of training and teamwork, as well as small talk and non-judgemental listening. CONCLUSIONS: Suicides in railway environments can present bystanders with little time to intervene. Potential interveners should therefore be resourced as best as possible through clear infrastructure help/emergency points, visibility of station staff and training for gatekeepers.
RESUMEN
OBJECTIVES: The Prognosis in Palliative care Study II (PiPS2) was a large multicentre observational study validating prognostic tools in patients with advanced cancer. Many palliative care studies fail to reach their recruitment target. To inform future studies, PiPS2 rigorously monitored and identified any potential recruitment barriers. METHODS: Key recruitment stages (ie, whether patients were eligible for the study, approached by the researchers and whether consent was obtained for enrolment) were monitored via comprehensive screening logs at participating sites (inpatient hospices, hospitals and community palliative care teams). The reasons for patients' ineligibility, inaccessibility or decision not to consent were documented. RESULTS: 17 014 patients were screened across 27 participating sites over a 20-month recruitment period. Of those, 4642 (27%) were ineligible for participation in the study primarily due to non-cancer diagnoses. Of 12 372 eligible patients, 9073 (73%) were not approached, the most common reason being a clinical decision not to do so. Other reasons included patients' death or discharge before they were approached by the researchers. Of the 3299 approached patients, 1458 (44%) declined participation mainly because of feeling too unwell, experiencing severe distress or having other competing priorities. 11% (n=1841/17 014) of patients screened were enrolled in the study, representing 15% (n=1841/12 372) of eligible patients. Different recruitment patterns were observed across inpatient hospice, hospital and community palliative care teams. CONCLUSIONS: The main barrier to recruitment was 'accessing' potentially eligible patients. Monitoring key recruitment stages may help to identify barriers and facilitators to enrolment and allow results to be put into better context. TRIAL REGISTRATION NUMBER: ISRCTN13688211.
RESUMEN
It is unclear whether inequalities in mental healthcare and mortality following the onset of psychosis exist by migrant status and region-of-origin. We investigated whether (1) mortality (including by major causes of death); (2) first admission type (inpatient or outpatient); (3) in-patient length of stay (LOS) at first diagnosis for psychotic disorder presentation, and; (4) time-to-readmission for psychotic disorder differed for refugees, non-refugee migrants, and by region-of-origin. We established a cohort of 1 335 192 people born 1984-1997 and living in Sweden from January 1, 1998, followed from their 14th birthday or arrival to Sweden, until death, emigration, or December 31, 2016. People with ICD-10 psychotic disorder (F20-33; N = 9399) were 6.7 (95% confidence interval [95%CI]: 5.9-7.6) times more likely to die than the general population, but this did not vary by migrant status (P = .15) or region-of-origin (P = .31). This mortality gap was most pronounced for suicide (adjusted hazard ratio [aHR]: 12.2; 95% CI: 10.4-14.4), but persisted for deaths from other external (aHR: 5.1; 95%CI: 4.0-6.4) and natural causes (aHR: 2.3; 95%CI: 1.6-3.3). Non-refugee (adjusted odds ratio [aOR]: 1.4, 95%CI: 1.2-1.6) and refugee migrants (aOR: 1.4, 95%CI: 1.1-1.8) were more likely to receive inpatient care at first diagnosis. No differences in in-patient LOS at first diagnosis were observed by migrant status. Sub-Saharan African migrants with psychotic disorder were readmitted more quickly than their Swedish-born counterparts (adjusted sub-hazard ratio [sHR]: 1.2; 95%CI: 1.1-1.4). Our findings highlight the need to understand the drivers of disparities in psychosis treatment and the mortality gap experienced by all people with disorder, irrespective of migrant status or region-of-origin.
RESUMEN
BACKGROUND: Choice of suicide method can strongly influence the outcome of suicidal behaviour, and is an important aspect of the process and planning involved in a suicide attempt. Yet, the reasons why individuals consider, choose or discard particular methods are not well understood. AIMS: This is the first study to explore method choices among people with a history of suicidal behaviour and individuals who have experienced, but not enacted, suicidal thoughts. METHOD: Via an online survey, we gathered open-ended data about choice of methods in relation to suicidal thoughts and behaviours, including reasons for and against specific means of harm. RESULTS: A total of 712 respondents had attempted suicide, and a further 686 experienced suicidal thoughts (but not acted on them). Self-poisoning was the most commonly contemplated and used method of suicide, but most respondents had considered multiple methods. Method choices when contemplating suicide included a broader range of means than those used in actual attempts, and more unusual methods, particularly if perceived to be lethal, 'easy', quick, accessible and/or painless. Methods used in suicide attempts were, above all, described as having been accessible at the time, and were more commonly said to have been chosen impulsively. Key deterrents against the use of specific methods were the presence of and impact on other people, especially loved ones, and fears of injury and survival. CONCLUSIONS: Exploration of method choices can offer novel insights into the transition from suicidal ideation to behaviour. Results underscore the need for preventative measures to restrict access to means and delay impulsive behaviour.
