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Edited by: Penny Bee, Helen Brooks, Patrick Callaghan and Karina Lovell

This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most major health-research programmes, and this book is designed to equip these individuals with the knowledge and skills necessary for meaningful participation. Edited by award-winning mental-health researchers, the book has been produced in partnership with mental-health-service users and carers with experience of research involvement. It includes personal reflections from these individuals alongside detailed information on quantitative, qualitative and health-economics research methods, and comprehensively covers all the basics needed for large-scale health research projects: systematic reviews; research design and analysis using both qualitative and quantitative approaches; health economics; research ethics; impact and dissemination. This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). The handbook clearly outlines research practices, and gives an insight into how public and patient representatives can be involved in them and shape decisions. Each chapter ends with a reflective exercise, and there are also some suggested sources of additional reading. People who get involved in health research as experts from experience now have a textbook to support their research involvement journey.

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The Changing Faces of UNRWA

From the Global to the Local

Elena Fiddian-Qasmiyeh

UNRWA on their mobile phones and/or laptops; all quotes from the circulars are taken verbatim from the documents on file with the author. In undertaking this close reading of the documents, I trace the nature and implications of a series of UNRWA’s more ‘private’ responses to the 2018 cuts, with a particular focus on shifts in educational and maternal and neonatal health services on the one hand and employment and pension rights on the other. I thus illustrate the extent to which UNRWA’s operational changes are invisible on the international

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Governing Precarity through Adaptive Design

Mark Duffield

improvement concerns critical infrastructure. In a gesture of transparency, humanitarian innovation accepts that after sixty years of terrestrial development, a billion or more people still lack access to piped water, stable electricity, proper waste disposal, adequate housing, comprehensive schooling, professional health care and regular financial services. Levelling up or reconstructing a fixed grid, however, hasn’t been a serious international objective since the onset of the downturn. The logistical mega-corridors that are being built sidestep

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Mel Bunce

these forms of disinformation. But they have not yet closely examined their impact in humanitarian crises. This is a remarkable oversight. In humanitarian crises, false information can have life-and-death consequences. As Jeanne Bourgault, President and Chief Executive Officer of Internews, states, false information can ‘undercut efforts to improve health, make disasters worse than they already are, alienate vulnerable populations, and even incite violence’ (quoted in Igoe, 2017 ). This article introduces the emerging research about online

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Andrew C. Grundy

A Research Handbook for Patient and Public Involvement Researchers Chapter 1: Patient and Public Involvement (PPI) and the research process Andrew C Grundy Chapter overview This chapter defines and introduces the different stages of the research process: from identifying a problem, to reviewing the literature; then developing a research question; designing a study; obtaining funding and ethical approval; recruiting participants; collecting and analysing data; and reporting and disseminating findings. This chapter will outline how users of health services, their

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The metamorphosis of autism

A history of child development in Britain


Bonnie Evans

This book explains the current fascination with autism by linking it to a longer history of childhood development. Drawing from a staggering array of primary sources, it traces autism back to its origins in the early twentieth century and explains why the idea of autism has always been controversial and why it experienced a 'metamorphosis' in the 1960s and 1970s. The book locates changes in psychological theory in Britain in relation to larger shifts in the political and social organisation of schools, hospitals, families and childcare. It explores how government entities have dealt with the psychological category of autism. The book looks in detail at a unique children's 'psychotic clinic' set up in London at the Maudsley Hospital in the 1950s. It investigates the crisis of government that developed regarding the number of 'psychotic' children who were entering the public domain when large long-stay institutions closed. The book focuses on how changes in the organisation of education and social services for all children in 1970 gave further support to the concept of autism that was being developed in London's Social Psychiatry Research Unit. It also explores how new techniques were developed to measure 'social impairment' in children in light of the Seebohm reforms of 1968 and other legal changes of the early 1970s. Finally, the book argues that epidemiological research on autism in the 1960s and 1970s pioneered at London's Institute of Psychiatry has come to define global attempts to analyse and understand what, exactly, autism is.

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Designing and road testing new measurement scales

Patrick Callaghan

Involvement Researchers Evaluating and Quantifying User and Carer Involvement in Mental Health Care Planning (EQUIP): Co-development of a new Patient-Reported Outcome Measure (PROM) Items for the EQUIP PROM were developed from 74 interviews and 9 focus groups conducted with service users, carers and mental health professionals recruited from two large NHS Trusts. From these data, 70 items (potentially relevant questions) were developed. First, face validity was examined with a mixed sample of 16 members of a Service User and Carer Advisory Group (SUCAG). Nine items were

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What matters is what works

The Third Way and the case of the Private Finance Initiative

Eric Shaw

highlights its political and ideological importance. The second reviews research findings on the operation of the PFI in the health service. I find that there is little substance to the Government’s claim that the PFI is on strictly pragmatic grounds the most effective way of renewing the capital infrastructure of the NHS – the third section explains why. In the fourth section, by

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Felix M. Bivens

for encouraging the institution’s generally privileged and affluent students to be more engaged with serious real-world problems. At the outset, the programme was envisioned simply as a mechanism for students to carry out community service projects. There were no ties to the academic dimension of the university and thus no potential for credited service learning. Nor was there any significant CBR being conducted by the university at the time, particularly as the school was teaching intensive rather than research focused and it prided itself on traditional curriculum

Open Access (free)

This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR). This study aimed to improve service user and carer involvement in care planning in mental health services. The study was called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). Its aim is to help other public and patient representatives increase their understanding and skills in research methods. The EQUIP programme used a range of different research methods to achieve its goals, and you will read