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The limited extent to which research evidence is utilised in healthcare and other public services is widely acknowledged. The United Kingdom government has attempted to address this gap by funding nine Collaborations for Leadership in Applied Health Research and Care (CLAHRCs). CLAHRCs aim to carry out health research, implement research findings in local healthcare organisations and build capacity across organisations for generating and using evidence. This wide-ranging brief requires multifaceted approaches; assessing CLAHRCs' success thus poses challenges for evaluation. This paper discusses these challenges in relation to seven CLAHRC evaluations, eliciting implications and suggestions for others evaluating similarly complex interventions with diverse objectives.

This paper examines the sleep disruption experienced by 36 families of technology-dependent children living at home in the United Kingdom. The paper begins with an overview of the qualitative study in which parents' experiences of sleep disruption emerged as a major theme. We then describe the nature of and reasons for the sleep disruption, the help families received with care overnight, and the effects of sleep disruption on parents in particular. This is followed by discussion of the implications of the findings for policy and practice as well as future research.

Pseudonyms are often used to de-identify participants and other people, organizations and places mentioned in interviews and other textual data collected for research purposes. While this is commonplace, the rationale for, and limits of, using pseudonyms or other methods to disguise identifying information are seldom explained in empirical works. Following an illustrated outline of pseudonyms, epithets, codenames and other obscurant techniques used in the social sciences and humanities, this paper considers how they variously frame the identities of, and position the relations between, participants and researchers. It suggests ways in which researchers might improve on current practice. [ABSTRACT FROM AUTHOR]

The Foucauldian perspective is used to examine the discourse of informal care. How the informal carer has appeared in policy and discourse since the 1970s and the visibility of this figure in the historical transformation of the medical gaze are covered.

Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion. [ABSTRACT FROM AUTHOR]

There is a growing body of research on the use of Twitter by people with health conditions, but it does not include people with dementia. In this brief report, we aim to: (1) determine whether people with dementia are using Twitter; (2) provide an estimate of the number of Twitter account holders who identify as having a diagnosis of dementia; and (3) examine the demographic characteristics of these account holders. Tweetcatcher was used to identify tweets containing the search terms 'dementia' or 'Alzheimer'. These data were systematically searched to locate account holders who identified themselves as having a diagnosis of dementia, and a content analysis was conducted of these account holders' profiles. Thirty account holders self-identified as having a diagnosis of dementia. The average age of account holders was 59 years and the majority were located in North America or the UK. Although the majority of account holders reported having Alzheimer's disease or did not specify a type of dementia, some rare forms of dementia were also evident. The sample consisted of relatively young account holders and contained more men, which might suggest that other groups are under-represented on Twitter. The majority of account holders considered themselves a dementia activist or were affiliated with a dementia organisation. The findings suggest that people with dementia, with varying demographic characteristics and a range of diagnoses, are active on Twitter. These account holders are more frequently male, relatively young, and dementia activists. [ABSTRACT FROM AUTHOR]

AimTo examine how patient perspectives and person-centred care values have been represented in documents on medicines optimisation policy in England.BackgroundThere has been growing support in England for a policy of medicines optimisation as a response to the rise of problematic polypharmacy. Conceptually, medicines optimisation differs from the medicines management model of prescribing in being based around the patient rather than processes and systems. This critical examination of current official and independent policy documents questions how central the patient is in them and whether relevant evidence has been utilised in their development.MethodsA documentary analysis of reports on medicines optimisation published by the Royal Pharmaceutical Society (RPS), The King’s Fund and National Institute for Health and Social Care Excellence since 2013. The analysis draws on a non-systematic review of research on patient experiences of using medicines.FindingsThe reports varied in their inclusion of patient perspectives and person-centred care values, and in the extent to which they drew on evidence from research on patients’ experiences of polypharmacy and medicines use. In the RPS report, medicines optimisation is represented as being a ‘step change’ from medicines management, in contrast to the other documents which suggest that it is facilitated by the systems and processes that comprise the latter model. Only The King’s Fund report considered evidence from qualitative studies of people’s use of medicines. However, these studies are not without their limitations.We suggest five ways in which researchers could improve this evidence base and so inform the development of future policy: by facilitating reviews of existing research; conducting studies of patient experiences of polypharmacy and multimorbidity; evaluating medicines optimisation interventions; making better use of relevant theories, concepts and tools; and improving patient and public involvement in research and in guideline development. [ABSTRACT FROM PUBLISHER]

Background: In 2008, the National Institute for Health Research (NIHR) began funding a major 5-year pilot research programme of translational research in England, establishing nine 'Collaborations for Leadership in Applied Health Research and Care' (CLAHRCs). A number of evaluations were carried out to examine whether or not the various collaborations worked as intended and why. In this paper, we examine what the theory of co-production adds to understanding of processes of knowledge creation and translation we observed in one of the CLAHRCs.Methods: A case study of a successful knowledge translation project was identified from our wider realist evaluation of the mechanisms of closer collaboration at play in the CLAHRC. In the project, a computer simulation model of an emergency pathway for acute ischaemic stroke was built to explore if and how the time between the onset and treatment of the condition could be minimised by redesigning the pathway. The aim of the case study was to improve our understanding of the nature and workings of the mechanisms of closer collaboration that were associated with the more successful projects by examining the relevance of the theory of co-production. Qualitative methods of analysis were used to explore the fit between the mechanisms of closer collaboration we observed in the realist evaluation and the principles of co-production we identified from the literature.Results: We found a close fit between the nine mechanisms of closer collaboration at work in the project and the principles of co-production (active agents; equality of partners; reciprocity and mutuality; transformative; and facilitated). The successful style of collaborative working exemplified by the project was consistent with a strong form of co-production.Conclusions: In our view, the theory of co-production provides useful insights into what it is about the qualities of collaborative working that inspire the requisite mechanisms for generating knowledge that is translated into practice. The theory provides a potentially useful basis for future knowledge translation programmes and projects in applied health research in a range of contexts. [ABSTRACT FROM AUTHOR]