Background and aimsHistorically, patient and public involvement (PPI) in the design and conduct of surgical trials has been absent or minimal, but it is now routinely recommended and even required by some research funders. We aimed to identify and describe current PPI practice in surgical trials in the United Kingdom, and to explore the views and experiences of surgical trial staff and patient or public contributors in relation to these practices. This was part of a larger study to inform development of a robust PPI intervention aimed at improving recruitment and retention in surgical trials.MethodsOur study had two stages: 1) an online survey to identify current PPI practice in active UK-led, adult surgical trials; and 2) focus groups and interviews with key stakeholders (surgical trial investigators, administrators, and patient or public contributors) to explore their views and experiences of PPI.ResultsOf 129 eligible surgical trial teams identified, 71 (55%) took part in the survey. In addition, 54 stakeholders subsequently took part in focus groups or interviews. Sixty-five (92%) survey respondents reported some kind of PPI, most commonly at the design and dissemination stages and in oversight or advisory roles. The single most common PPI activity was developing participant information sheets (72%). Participants reported mixed practice and views on a variety of issues including the involvement of patients versus lay members of the public, recruitment methods, use of role descriptions and payment for the time of PPI contributors. They suggested some solutions, including the use of written role descriptions and databases of potential PPI contributors to aid recruitment.ConclusionsUK surgical trials involve patients and members of the public in a variety of different ways, most commonly at the beginning and end of the trial lifecycle and in oversight or advisory roles. These are not without challenges and there remain uncertainties about who best to involve, why, and how. Future research should aim to address these issues.Electronic supplementary materialThe online version of this article (10.1186/s13063-019-3183-0) contains supplementary material, which is available to authorized users.
Purpose This review and theoretical analysis paper aims to bring together literatures of place, mobility, refugees and mental health to problematise the ways in which social support is practised on the ground and to rethink its possibilities. Design/methodology/approach This paper draws on an interdisciplinary understanding of social support that focusses on the social networks and significant and intimate relationships that mitigate negative mental health and well-being outcomes. The authors explore the dialectic relationship between place and mobility in refugee experiences of social support. Findings The authors argue that, in an Euro-American context, practices of social support have historically been predicated on the idea of people-in-place. The figure of the refugee challenges the notion of a settled person in need of support and suggests that people are both in place and in motion at the same time. Conversely, attending to refugees’ biographies, lived experiences and everyday lives suggests that places and encounters of social support are varied and go beyond institutional spaces. Research limitations/implications The authors explore this dialectic of personhood as both in place and in motion and its implications for the theorisation, research and design of systems of social support for refugees. Originality/value This paper surfaces the dialectics of place and mobility for supporting refugee mental health from an interdisciplinary perspective.
When Open Dialogue diversifies internationally as an approach to mental healthcare, so too do the research methodologies used to describe, explain and evaluate this alternative to existing psychiatric services. This article considers the contribution of anthropology and its core method of ethnography among these approaches. It reviews the methodological opportunities in mental health research opened up by anthropology, and specifically the detailed knowledge about clinical processes and institutional contexts. Such knowledge is important in order to generalize innovations in practice by identifying contextual factors necessary to implementation that are unknowable in advance. The article explains the ethnographic mode of investigation, exploring this in more detail with an account of the method of one anthropological study under way in the UK focused on Peer-Supported Open Dialogue (POD) in the National Health Service (NHS). It sets out the objectives, design and scope of this research study, the varied roles of researchers, the sites of field research and the specific interaction between ethnography and Open Dialogue. This study is original in its design, context, conduct and the kind of data produced, and presents both opportunities and challenges. These are explained in order to raise issues of method that are of wider relevance to Open Dialogue research and anthropology.
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