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PurposeTo research involvement of healthcare staff in the UK and identify practical organisational and policy solutions to improve and boost capacity of the existing workforce to conduct research.Design/methodology/approachA mixed-method study presenting three work packages here: secondary analysis of levels of staff research activity, funding, academic outputs and workforce among healthcare organisations in the United Kingdom; 39 Research and Development lead and funder interviews; an online survey of 11 healthcare organisations across the UK, with 1,016 responses from healthcare staff included for analysis; and 51 interviews of healthcare staff in different roles from six UK healthcare organisations.FindingsInterest in research involvement is strong and widespread but hampered by a lack of systematic organisational support despite national policies and strategies to increase staff engagement in research. While useful, these external strategies have limited universal success due to lack of organisational support. Healthcare organisations should embed research within organisational and human resources policies and increase the visibility of research through strategic organisational goals and governance processes. A systems-based approach is needed.Research limitations/implicationsThe research gathered data from a limited number of NHS trusts but these were purposively sampled to provide a range of different acute/community health service organisations in different areas. But data was therefore more detailed and nuanced due to a more in-depth approach.Practical implicationsThe findings are relevant for developing policies and practice within healthcare organisations to support research engagement. The findings also set out key policy and strategic recommendations that will support greater research engagement.Social implicationsIncreased research activity and engagement in healthcare providers improves healthcare outcomes for patients.Originality/valueThis is a large scale (UK-wide) study involving a broad range of healthcare staff, with good engagement of nurses, midwives and Allied Healthcare Professionals who have not been previously achieved. This allowed valuable analysis of under-researched groups and comparisons by professional groups. The findings highlight the need for tailored action to embed research reporting, skills, professional development and infrastructure into organisational policies, strategies and systems, along with broader system-wide development.

Introduction: There is a growing recognition of the impact of work on health both positive and negative. It is important that all health care professionals are equipped to understand the effects of work and worklessness on health and help patients remain in work or manage a healthy return to work where appropriate. Despite explicit reference to health and work in the General Medical Council’s Outcomes for Graduates, currently, there is not a theme that is integrated across the undergraduate medical curricula. Aim: This study evaluates medical tutors’ and undergraduates’ perspectives of a selection of health and work topics in a teaching pilot to consider the suitability and appropriateness for delivery, integration into the curriculum, tailoring of the resources, and appropriateness and expected attainment of learning objectives. Methods: Qualitative, semi structured interviews and focus groups were carried out with five medical tutors and 36 undergraduates. Interviews and focus groups were recorded, transcribed and thematically analysed. Results: The medical tutors and undergraduates identified suitability of appropriate subject specialties and years of teaching, whether learning objectives were important and if these had been achieved, and recommendations for future delivery. Discussion: Medical tutors were committed to delivering the health and work topics with the flexibility of tailoring the resources to existing subject specialties and with respect to the year of study. Learning objectives were perceived appropriate by tutors, despite ambivalence about their importance from some undergraduates. The resources were identified as having relevance to public health undergraduate teaching and teaching during general practice placements.

Although it is recognized in the early stages of cancer recovery that changes in lifestyle including increases in physical activity improves physical function, there are no clear findings whether low versus moderate intensity activity or home or gym exercise offer optimal benefit. Isometric-resistance exercises can be carried out with very little equipment and space and can be performed while patients are bed-bound in hospital or at home. This embedded qualitative study, based in an English hospital trust providing specialist cancer care, was undertaken as a component of a feasibility trial to evaluate the acceptability and feasibility of an isometric-resistance exercise program and explore the suitability of functional assessments by drawing from the experiences of abdominal cancer patients following surgery. Telephone interviews were undertaken with 7 participants in the intervention group, and 8 interviews with the usual care group (n = 15). The gender composition consisted of 11 females and 4 males. Participants’ ages ranged from 27 to 84 (M = 60.07, SD = 15.40). Interviews were conducted between August 2017 and May 2018, with audio files digitally recorded and data coded using thematic framework analysis. Our results show that blinding to intervention or usual care was a challenge, participants felt the intervention was safe and suitable aided by the assistance of a research nurse, yet, found the self-completion questionnaire tools hard to complete. Our study provides an insight of trial processes, participants’ adherence and completion of exercise interventions, and informs the design and conduct of larger RCTs based on the experiences of abdominal cancer surgery patients.

The National Institute for Health and Care Excellence (NICE) provides guidance and recommendations on the use of new and existing medicines and treatments within the NHS, basing its decisions on a review of clinical and economic evidence principally, at least for STAs, provided by the drug manufacturer. The advice provided by NICE is aimed at overcoming the previously ad hoc, discretionary decisions in order to standardise access to healthcare technologies across England based on evidence. A Single Technological Appraisal (STA) is one element of NICE’s decision-making processes in which evidence about a selected technology (often medicines) is evaluated in 3 distinct phases (scoping, assessment and appraisal). In the last phase of this process an independent Appraisal Committee evaluates evidence in a meeting, partly held in public with the latter half taking place in a ‘closed’ session. During the meeting, the Appraisal Committee considers evidence based on clinical and cost-effectiveness, as well as from statements expressed by patients, commissioning experts and clinical specialists. The Institute encourages experts attending the meeting to provide both written and oral commentary about their personal view in the current management of the condition and the expected role and use of the technology – in particular how it might provide benefit to patients. Yet, NICE and its committees find themselves in a potentially incongruous position: how to take on board the experiential evidence from individual experts along with the evidence on cost-effectiveness when reaching a decision, about whether or not to recommend a treatment on cost-effectiveness grounds. This paper considers how NICE committees incorporate the views of patient perspectives in making rationing decisions about STAs. The findings from the study will discuss where points of tension / conflict arise during meetings and how Committee members navigate experiential accounts with scientific data, which types of patient perspectives are regarded favourably and which perspectives are treated with greater caution (tension between representing patients views vs tokenism), and will highlight how Committee members in fact reflect upon their own personal experience and background in the appraisal process, and thereby are at odds with retaining an element of neutrality in decision-making, as they contend with combining their own subjective views alongside considerations of rationing in the STA process. The analysis is drawn from an ESRC funded study which used an ethnographic approach to understand the decision making process within STAs involving three contrasting pharmaceutical products. Data collection methods included analysis of documentary evidence released by NICE, non-participant unstructured observations of nine STA meetings, and qualitative interviews with key informants (n=41) involved in each of the three case studies.

Background: We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. Aim: To find out in the existing literature what features of hospice at home models work best, for whom and under what circumstances. Design: A realist logic of analysis was applied to synthesise the evidence focusing on mechanisms by which an intervention worked (or did not work). An initial programme theory was developed using the National Association for Hospice at Home standards, Normalisation Process Theory and through refinement using stakeholder engagement. Data sources: PubMed, Science Direct, AMED, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, SCOPUS, Web of Science, DARE, Google Scholar, NHS Evidence, NIHR CRN portfolio database, NIHR journal library of funded studies, including searches on websites of relevant professional bodies (August 2014, June 2017, June 2019). Results: Forty-nine papers were reviewed, of which 34 contributed evidence to at least one of the eight theory areas: marketing and referral, sustainable funding model, service responsiveness and availability, criteria for service admission, knowledge and skills of care providers, integration and coordination, anticipatory care, support directed at carers. Conclusions: Our literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, our programme theories can be refined and tested against any new empirical evidence.

Background Muscle strengthening exercises have the potential to improve outcomes for boys with haemophilia, but it is unclear what types of exercise might be of benefit. We elicited the views of health-care professionals, boys and their families to create and assess a home-based muscle strengthening programme. Objective To design and develop a muscle strengthening programme with health-care professionals aimed at improving musculoskeletal health, and refine the intervention by engaging boys with haemophilia and their families (Study 1). Following delivery, qualitatively evaluate the feasibility and acceptability of the exercise programme with the boys and the study's physiotherapists (Study 2). Design A person-based approach was used for planning and designing the exercise programme, and evaluating it post-delivery. The following methods were utilized: modified nominal group technique (NGT) with health-care professionals; focus group with families; exit interviews with boys; and interviews with the study's physiotherapists. Results Themes identified to design and develop the intervention included exercises to lower limb and foot, dosage, age accommodating, location, supervision and monitoring and incentivization. Programme refinements were carried out following engagement with the boys and families who commented on: dosage, location, supervision and incentivization. Following delivery, the boys and physiotherapists commented on progression and adaptation, physiotherapist contact, goal-setting, creating routines and identifying suitable timeframes, and a repeated theme of incentivization. Conclusions An exercise intervention was designed and refined through engagement with boys and their families. Boys and physiotherapists involved in the intervention's delivery were consulted who found the exercises to be generally acceptable with some minor refinements necessary.

ObjectiveHospice at Home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a ‘good death’. A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision.MethodsService managers of adult HAH services in the ‘Hospice UK’ and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview.ResultsOf 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical.ConclusionThere is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.

IntroductionHaemophilia is a rare, inherited disorder in which blood does not clot normally, resulting in bleeding into joints and muscles. Long-term consequence is disabling joint pain, stiffness, muscle weakness, atrophy and reduced mobility. The purpose of this proposed feasibility of a randomised controlled trial (RCT) is to test the feasibility of an age-appropriate physiotherapy intervention designed to improve muscle strength, posture and the way boys use their joints during walking and everyday activities.Methods and analysisA small-scale two-centre RCT of a 12-week muscle strengthening exercise intervention versus usual care for young children with haemophilia will be conducted. Primary outcomes will be safety and adherence to the exercise intervention. Secondary outcomes will include recruitment, retention and adverse event rates, clinical data, muscle strength, joint biomechanics and foot loading patterns during walking, 6 min timed walk, timed-up-and-down-stairs, EQ-5D-Y, participants’ perceptions of the study, training requirements and relevant costs. Recruitment, follow-up, safety and adherence rates will be described as percentages. Participant diary and interview data will be analysed using a framework analysis. Demographic and disease variable distributions will be analysed for descriptive purposes and covariant analysis. Estimates of differences between treatment arms (adjusted for baseline) and 75% and 95% CIs will be calculated.Ethics and disseminationThe study has ethical approval from the London—Fulham Research Ethics Committee (17/LO/2043) as well as Health Research Authority approval. As well as informing the design of the definitive trial, results of this study will be presented at local, national and international physiotherapy and haemophilia meetings as well as manuscripts submitted to peer-reviewed journals. We will also share the main findings of the study to all participants and the Haemophilia Society.

Supplemental material, Search_strategy_supplementary_document for Understanding what works, why and in what circumstances in hospice at home services for end-of-life care: Applying a realist logic of analysis to a systematically searched literature review by Ferhana Hashem, Charlotte Brigden, Patricia Wilson and Claire Butler in Palliative Medicine

Self-management strategies are designed to improve lung and respiratory health through structured self-management plans with regular practitioner reviews. Strategies have not, however, focused upon how patient support groups and advocacy networks can help with the management of these conditions; therefore, it is unknown what impact they may have on patient self-management. A qualitative study was designed to help understand what impact the British Lung Foundation's Breathe Easy (BE) groups have on patients managing their lung and respiratory conditions. A semistructured telephone interview schedule was developed to study the network. Topics covered included: perceptions about the BE groups; current referrals systems and integration pathways; benefits of attending the BE groups; and integration of the BE groups into the respiratory pathway. Key themes explored included: shared patient experience and peer support; patient self-management and self-education; attendance of healthcare professionals; and the impact of integrating BE groups into the respiratory pathway. BE networks were shown to support self-care initiatives for people attending the groups, and members expressed a social and educational benefit. BE networks were working with the local National Health Service to become an integral part of the respiratory pathway, yet there was evidence of resistance from the health service in incorporating the networks., Lung and respiratory conditions affect ∼12.7 million people in the UK with asthma, COPD or other longstanding respiratory illnesses; half are dependent on prescribed medicines. Voluntary patient support groups can provide peer support for self-management. http://ow.ly/7Xz330hbeth

This article examines the “technological appraisals” carried out by the National Institute for Health and Care Excellence as it regulates the provision of expensive new drugs within the English National Health Service on cost-effectiveness grounds. Ostensibly this is a highly rational process by which the regulatory mechanisms absorb uncertainty, but in practice, decision making remains highly complex and uncertain. This article draws on ethnographic data—interviews with a range of stakeholders and decision makers (n = 41), observations of public and closed appraisal meetings, and documentary analysis—regarding the decision-making processes involving three pharmaceutical products. The study explores the various ways in which different forms of uncertainty are perceived and tackled within these Single Technology Appraisals. Difficulties of dealing with the various levels of uncertainty were manifest and often rendered straightforward decision making problematic. Uncertainties associated with epistemology, procedures, interpersonal relations, and technicality were particularly evident. The need to exercise discretion within a more formal institutional framework shaped a pragmatic combining of strategies tactics—explicit and informal, collective and individual—to navigate through the layers of complexity and uncertainty in making decisions.

PurposeThe purpose of this paper is to answer the question: in the British state's relationship with its diverse minority ethnic communities, how have politics framed administrative allocation of language support services? The dynamics of policy development are investigated, a tangible effect of the shift from unofficial pragmatic multiculturalism towards community cohesion/“Britishness” having been a government focus on English for speakers of other languages (ESOL) rather than translation/interpreting. This change has revealed a tension between the demands of identity and equality for minority ethnic people: respect for cultural identity requires provision of translation/interpreting while creating (political) equality between majority and minority communities entails the latter having access to the political language so placing an emphasis on ESOL.Design/methodology/approachAn evidence synthesis is undertaken of policy documents relating to the British state's provision of language support services and data on the skill levels in English from government surveys.FindingsThe relative contribution of financial constraints and new policy/ideological positions to changes in the direction of policy and provision is assessed. With respect to the “new approach to ESOL”, this process of discretionary allocation that privileges policies of integration and community cohesion rather than language need itself is viewed against the inadequacies of the data currently available on levels of English language proficiency in providing the basis for making policy decisions and allocating resources.Originality/valueThe level of English language skills amongst Britain's minority ethnic groups and of government policy to address skill deficits has been substantially neglected. The paper provides a policy focus ahead of the release of the 2011 Census findings on language questions.

The historic partition of Bengal in 1947 caused a shift in the composition of the Muslim and Hindu political elite who were now geographically bounded into two separate newly formed provincial states of East Pakistan and West Bengal. The aim of this article is to explore the transformation in elite conceptions of identity in East Pakistan from the post-1947 era until the creation of Bangladesh in 1971. The prevalence of two new competing elites created a great dichotomy in the way identity was conceived. The change of these elite groups fundamentally altered the view of identity that was articulated during this period.

The Teenage Pregnancy Strategy for England has a Public Service Agreement target to substantially reduce the level of teenage pregnancies by 2010. It argues that all the main risk factors need to be incorporated into risk assessments undertaken by agencies and professionals. These include deprivation, poor educational attainment and disengagement from school, and ethnicity, the last's association with high teenage pregnancy rates being independent of deprivation. The strategy adds, too, that local areas should target delivery of their local strategy more intensively on these groups most at risk. An attempt is made to systematically review the evidence on the availability and quality of ethnicity data on maternities and abortions, based on extensive structured searches of a wide range of abstracted and full-text literature and statistical sources published 1997–2008. This reveals that, in practice, local teenage pregnancy strategies have little, if any, ethnically coded data to draw upon and it is not surp...