BackgroundPain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group.MethodsA qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory.ResultsStaff generally relied on patients’ self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients’ ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient’s communication about their pain involved several members of staff, each having to make sense of the patient’s pain as in an ‘overall picture’. Information about patients’ pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a ‘patient specific picture of the pain’ required collective staff memory, ‘mental computation’ and time.ConclusionsThere is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient’s pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1690-1) contains supplementary material, which is available to authorized users.

Background: The recognition, assessment and management of pain in hospital settings is suboptimal, and is a particular challenge in patients with dementia. The existing process guiding pain assessment and management in clinical settings is based on the assumption that nurses follow a sequential linear approach to decision making. In this paper we re-evaluate this theoretical assumption drawing on findings from a study of pain recognition, assessment and management in patients with dementia. Aim:To provide a revised conceptual model of pain recognition, assessment and management based on sense-making theories of decision making. Methods:The research we refer to is an exploratory ethnographic study using nested case sites. Patients with dementia (n= 31) were the unit of data collection, nested in 11 wards (vascular, continuing care, stroke rehabilitation, orthopaedic, acute medicine, care of the elderly, elective and emergency surgery), located in four NHS hospital organizations in the UK. Data consisted of observations of patients at bedside (170 hours in total); observations of the context of care; audits of patient hospital records; documentary analysis of artefacts; semi-structured interviews (n=56) and informal open conversations with staff and carers (family members).Findings: Existing conceptualizations of pain recognition, assessment and management do not fully explain how the decision process occurs in clinical practice. Our research indicates that pain recognition, assessment and management is not an individual cognitive activity; 2 rather it is carried out by groups of individuals over time and within a specific organizational culture or climate, which influences both health care professional and patient behavior. Conclusions:We propose a revised theoretical model of decision making related to pain assessment and management for patients with dementia based on theories of sense-making, which is reflective of the reality of clinical decision making in acute hospital wards. The revised model recognizes the salience of individual cognition as well as acknowledging that decisions are constructed through social interaction and organizational context. The model will be used in further research to develop decision support interventions to assist with the assessment and management of patients with dementia in acute hospital settings.

Background Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a ‘long-list’ of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a ‘long-list’ of outcome items for non-pharmacological interventions for people with dementia living at home. Methods Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers ( n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample ( n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the ‘long-list’ in eight workshops. Results One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). Conclusions This paper presents a transparent blueprint for ‘long-list’ development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: 1) Literature search of previous research related to wellbeing and couplehood in dementia; 2) Interviews with couples with dementia based on the findings of the literature search; 3) Further authentication of the findings within expert groups of people with dementia and carers. For analysis of data we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes "Home and Neighborhood", "Meaningful activities and Relationships", "Approach and Empowerment" and "Couplehood" with related sub themes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.

Health Services and Delivery ResearchISSN 2050-4349 (Print) ISSN 2050-4357 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: nihredit@southampton.ac.ukThe full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services including costs and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evaluative research to improve health services.For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 11/2000/05. The contractual start date was in October 2012. The final report began editorial review in October 2015 and was accepted for publication in March 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Heal...