Our approach to developing communities of practice to foster research capacities for the adult social care workforce.

Background: Efforts to build and foster adult social care research in England have historically encountered more challenges to its growth and expansion compared with health research, with a sector facing significant barriers in facilitating research activity due to a lack of resourcing, poor valuation or understanding of the profile of social care research. The landscape for supporting research in adult social care has been rather bleak, but in recent years there has been recognition of the need to foster a research community. The National Institute for Health and Care Research in England have committed to investing in social care research capacity by funding six adult social care partnerships, with one based in Southeast England. Process developing Communities of Practice COPs: Three large online networking events were held in the first year of the project to engage managers and practitioners from the local authority and from the wider adult social care sector. These took place in July and November 2021, with a last event in March 2022. Two COPs were identified, following an ordering and thematising process of feedback from the networking events, of: (a) Supporting people with complex needs throughout the lifespan, and (b) Enhancing, diversifying and sustaining the social care workforce. Whilst it would be premature to identify their long-term impacts, through the facilitation of 20 COP meetings held so far, alongside the engagement platforms and enrichment resources, these have provided a space for regular communication in the sector, knowledge sharing and networking between COP members. Conclusions: The COP framework offers a collaborative approach to initiating research from the grass-roots level in adult social care. This paper focuses on how the COP model offers great promise for knowledge-exchange providing a forum to generate and disseminate knowledge around social care in our two COP domains.

Social care research looks into how care and support is delivered enabling people to continue to be independent, keep their dignity and help them achieve a better quality of life. The social care sector is responsible for delivering services and are provided by local authorities, third or private sector organisations. Research in adult social care is important to help the social care workforce understand which approaches and interventions work and how to improve the quality of care and support. However, there are barriers with setting up and running a research study in the social care sector, including limited dedicated time for the social care workforce to do research, accessing participants through providers, commissioners or unpaid carers, and due to the fragmented nature of the sector, difficulties in facilitating or supporting research. There are few opportunities for the social care workforce to develop their skills and experiences to undertake their own research. In order to help the social care workforce foster a culture of research and learning, we have used a well-known group learning and sharing framework called Communities of Practice (COPs) to help generate a culture of research involving all providers and users of social care. We developed the COPs by inviting them to three online networking events to identify what topics of research are important to providers and users. Their ideas were then put into themes and discussed, and two areas were finally decided upon for the COPs of: (a) Supporting people with complex needs throughout the lifespan, and (b) Enhancing, diversifying and sustaining the social care workforce. The COPs provide a place for users and providers to meet and discuss what research is important to them to identify some potential solutions to the problems encountered in adult social care.

Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation.

BACKGROUND: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. AIM: To explore what works best to promote family carers' experiences of hospice-at-home. DESIGN: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. SETTING/PARTICIPANTS: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). RESULTS: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient-carer dyad. CONCLUSIONS: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death.

Exploring early career researchers' perspectives of training and funding opportunities: Motivations and setbacks when applying for the UK's National Institute for Health and Care Research's fellowships and research funding.

Despite the availability of training and funding opportunities with the UK's National Institute for Health and Care Research (NIHR), early career researchers (ECRs) invariably experience concern in sustaining an academic career in health research given the uncertainties of success following rejection from peer-reviewed funding bodies. The objective of this study was to consider what motivates ECRs when applying for funding to NIHR programmes and how they overcome funding setbacks. Eleven ECRs took part in a one-to-one virtual in-depth interview; the sample included more women (n = 8) than men (n = 3) and participants included pre-doctoral researchers (n = 5), and both doctoral (n = 2) and post-doctoral (n = 4) ECRs. The interviews were analysed using the logic of a systems theory framework identifying factors impacting on ECRs occurring within an individual, within their social system and within their broader environment. The central themes that emerged from the data focussed on: (1) facilitators for ECRs to apply for NIHR funding; (2) exploring ECRs' setbacks and disappointments; (3) improving chances of funding; and (4) deciding to apply with a view to re-applying in future. The participants' responses provided an honest and frank reflection of the uncertainties and challenges as ECRs in the current climate. Further strategies to support ECRs could be facilitated through local NIHR infrastructure, mentorship, better access to local support networks and hard-wiring research into an organisation's strategic priorities.

Research engagement and research capacity building: a priority for healthcare organisations in the UK.

PURPOSE: To 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/APPROACH: A 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. FINDINGS: Interest 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/IMPLICATIONS: The 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 IMPLICATIONS: The 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 IMPLICATIONS: Increased research activity and engagement in healthcare providers improves healthcare outcomes for patients. ORIGINALITY/VALUE: This 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.

What are the impacts of setting up new medical schools? A narrative review.

BACKGROUND: The growth of the UK's population together with an aging society with increasingly complex health and social care needs has placed a greater demand on statutory care services. In view of this emerging landscape, the UK Government has sought to increase its medically trained workforce in order to better respond to the demands placed on the health service. Five universities were announced as homes to new medical schools offering undergraduate places to boost the numbers of doctors training in England. The aim of this narrative review was to explore how new medical schools could improve the health outcomes of the local population and evaluate the potential contribution it may make to the local economy, workforce and to research and innovation. METHODS: A narrative review was undertaken using a systematic approach for the search literature strategy. The articles were evaluated by undertaking a critical assessment evaluating the fitness of a paper for review according to results, methods used to test the hypothesis, conclusions and impact and limitations. Thematic analysis was employed to organise and summarise the findings across a heterogeneous body of literature included in the review. The analysis was developed in an inductive manner and there were not any predefined themes to guide data extraction and analysis. RESULTS: Thirty-six articles were selected for inclusion for this narrative review. The review identified six key themes: influence of prior rural exposure, medical school environment and rural enrichment programmes, workforce, health outcomes of local populations, social accountability, economic contribution of medical schools to communities and impact on rural research. CONCLUSIONS: The studies included found a wealth of information on a wide-range of topics on the expansion of undergraduate education and its implications on the future medical workforce. It was shown that medical schools can have a positive effect on the health, social, economic and research activity of a region, but this literature tended to be heterogeneous in focus without consideration of the inter-connections between the wider societal and economic impacts arising from long-term sustainable change being brought to a region.

Incorporating the interaction between health and work into the undergraduate medical curriculum - a qualitative evaluation of a teaching pilot in English medical schools.

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, this 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: Medical tutors and undergraduates identified suitability of appropriate subject specialities 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 specialities and with respect to the year of study. Learning objectives were perceived appropriate by tutors, despite ambivalence about their importance from some undergraduates. Resources were identified as having relevance to public health undergraduate teaching and during general practice placements.

Hospice at Home services in England: a national survey.

OBJECTIVE: Hospice 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. METHODS: Service 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. RESULTS: Of 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. CONCLUSION: There 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.

Acceptability and Feasibility of an Isometric Resistance Exercise Program for Abdominal Cancer Surgery: An Embedded Qualitative Study.

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 importance of cancer patients' functional recollections to explore the acceptability of an isometric-resistance exercise intervention: A qualitative study.

BACKGROUND AND AIMS: Although it has been widely recognized the potential of physical activity to help cancer patients' preparation for and recovery from surgery, there is little consideration of patient reflections and recovery experiences to help shape adherence to exercise programs. The aim was to explore the acceptability of our newly proposed isometric exercise program in a large general hospital trust in England providing specialist cancer care by using patient recollections of illness and therapy prior to undertaking a randomized controlled trial. METHODS: Four Focus groups (FGs) were conducted with cancer survivors with an explicit focus on patient identity, functional capacity, physical strength, exercise advice, types of activities as well as the timing of our exercise program and its suitability. Thematic framework analysis was used with NVivo 11. RESULTS: FG data was collected in January 2016. A total of 13 patients were participated, 10 were male and 3 were female with participants' ages ranging from 39 to 77. Data saturation was achieved when no new information had been generated reaching "information redundancy." Participants reflected upon their post-surgery recovery experiences on the appropriateness and suitability of the proposed intervention, what they thought about its delivery and format, and with hindsight what the psychological enablers and barriers would be to participation. CONCLUSION: Based upon the subjective recollections and recovery experiences of cancer survivors, isometric-resistance exercise interventions tailored to individuals with abdominal cancer has the potential to be acceptable for perioperative patients to help increase their physical activity and can also help with emotional and psychological recovery.

Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals.

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.

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.

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.

Protocol for a feasibility randomised controlled trial of a musculoskeletal exercise intervention versus usual care for children with haemophilia.

INTRODUCTION: Haemophilia 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 ANALYSIS: A 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 DISSEMINATION: The 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.

Effects of preoperative and postoperative resistance exercise interventions on recovery of physical function in patients undergoing abdominal surgery for cancer: a systematic review of randomised controlled trials.

OBJECTIVE: To systematically review the effects of preoperative and postoperative resistance exercise training on the recovery of physical function in patients undergoing abdominal surgery for cancer. DATA SOURCES: A systematic review of English articles using Medline, Physiotherapy Evidence Database, CINAHL and the Cochrane Library electronic databases was undertaken. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies were included if they used a randomised, quasi-randomised or controlled trial study design and compared the effects of a muscle-strengthening exercise intervention (±other therapy) with a comparative non-exercise group; involved adult participants (≥18 years) who had elected to undergo abdominal surgery for cancer; and used muscle strength, physical function, self-reported functional ability, range of motion and/or a performance-based test as an outcome measure. RESULTS: Following screening of titles and abstracts of the 588 publications retrieved from the initial search, 24 studies met the inclusion criteria and were accessed for review of the full-text version of the article, and 2 eligible studies met the inclusion criteria and were included in the review. One exercise programme was undertaken preoperatively and the other postoperatively, until discharge from hospital. The exercise interventions of the included studies were performed for five and eight sessions, respectively. There were no differences between groups in either study. CONCLUSION: The only two studies designed to determine whether preoperative or postoperative resistance muscle-strengthening exercise programmes improved or negatively affected physical function outcomes in patients undergoing abdominal surgery for cancer provide inconclusive results.

Supporting patients self-managing respiratory health: a qualitative study on the impact of the Breathe Easy voluntary group network.

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.

Decision making in NICE single technological appraisals: How does NICE incorporate patient perspectives?

CONTEXT: The National Institute for Health and Care Excellence (NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population-based evidence on clinical and cost-effectiveness when making a decision whether to fund a drug. OBJECTIVE: This paper considers how NICE Single Technological Appraisal (STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. METHODS: A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non-participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. SETTINGS AND PARTICIPANTS: Unstructured non-participant observations were carried out at nine STA meetings, and 41 semi-structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. RESULTS: Our analysis showed how the committees displayed a preference for an ideal-type of patient representative, disagreement among the committee when weighing-up patient statements in the STA process and more pre-preparation support for patient involvement. CONCLUSIONS: Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision-making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives.

Still Elegantly Muddling Through? NICE and Uncertainty in Decision Making About the Rationing of Expensive Medicines in England.

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.

Trust, regulatory processes and NICE decision-making: Appraising cost-effectiveness models through appraising people and systems.

This article presents an ethnographic study of regulatory decision-making regarding the cost-effectiveness of expensive medicines at the National Institute for Health and Care Excellence (NICE) in England. We explored trust as one important mechanism by which problems of complexity and uncertainty were resolved. Existing studies note the salience of trust for regulatory decisions, by which the appraisal of people becomes a proxy for appraising technologies themselves. Although such (dis)trust in manufacturers was one important influence, we describe a more intricate web of (dis)trust relations also involving various expert advisors, fellow committee members and committee Chairs. Within these complex chains of relations, we found examples of both more blind-acquiescent and more critical-Investigative forms of trust as well as, at times, pronounced distrust. Difficulties in overcoming uncertainty through other means obliged trust in some contexts, although not in others. (Dis)trust was constructed through inferences involving abstract systems alongside actors' oral and written presentations-of-self. Systemic features and 'forced options' to trust indicate potential insidious processes of regulatory capture.