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Social care to assist with the activities of daily living is a necessity for many older people; while informal care provided by family members can be a first step to meeting care needs, formal care provided by professionals is often needed or preferred by older people and their families. In England, the number of older people paying for formal care is set to rise, driven by an ageing population and the limited resources of local authorities. Little is known about how older people and their families experience the potentially disruptive processes of deciding upon, searching for and implementing such care, including the financial implications. This paper explores accounts of seeking self-funded social care in England, told by older people and their families in 39 qualitative interviews. These accounts, which we call ‘care chronicles’, include stories about the emergence of care needs and informal care-giving, the search for formal care, including interacting with new systems and agencies, and getting formal (paid) care, either as the recipient or an involved family member. Stories are analysed through the lens of biographical disruption, and analysis demonstrates that such disruptions can occur for older people and their families across the entirety of the care chronicle. Needing, seeking and getting care all have the potential to cause practical and symbolic disruptions; moreover, these disruptions can be cumulative and cyclical, as attempts to resolve or minimise one disruption can lead to new ones. While the concept of biographical disruption is a mainstay in medical sociology, it is less frequently applied to issues relating to social care, and most often takes embodiment as a key focus. This study is novel in its application of the concept to experiences of seeking self-funded care, and in its introduction of the concept of ‘care chronicles’, which invite a longer and broader view of biographical disruptions in the lives of older people with care needs and their families.

Context Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this. Design We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home. Results We propose that being involved in care is a dynamic form of labour, which we call ‘involvement work’ (IW). In hospital, many patients ‘entrust’ IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice. Discussion Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples' sense and experience of (in)dependence. Conclusions A balance needs to be struck between respecting peoples' desire/capacity for non‐involvement in hospital while recognising that ‘delegating’ IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired. Patient/Public Contribution Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented.

Unnecessarily prolonged stays in hospitals can have negative impacts on patients and present avoidable costs to health and social care systems. This paper presents the qualitative findings of a multi-methods study of the social care causes of delayed transfers of care (DTOC) for older people in England. The quantitative strand of this study found that DTOC are significantly affected by homecare supply. In this paper, we explore in depth how and why social care capacity factors lead to delays, from the perspectives of those working within the system. We examined the local transfer arrangements in six English local authority (LA) sites that were purposively sampled to include a range of DTOC performance and LA characteristics. Between March and December 2018, 52 professionals involved in arranging or facilitating discharge from hospitals in these sites provided qualitative data, primarily through semi-structured interviews. Topics included discharge teams and processes, strategic issues and perceived causes of delays. The thematic analysis uncovered the nuances behind the causes of DTOC previously categorised broadly as 'provider capacity' and 'patient choice'. In particular, our analysis highlights the lack of fit between available provision and the needs of people leaving hospital (theme 1); workforce inconsistencies (theme 2) and a myth of patient choice (theme 3). We are now at a turning point in the development of policy to reduce DTOC in the English system, with the full implications of a new national discharge to assess programme yet to be seen. Our research shows the significance of the alignment of service capacity, including the type and location of provision, with the needs and preferences of those leaving hospital. As the new system becomes established, attendance to such nuances behind blockages in the system will be more important than ever.

ObjectivesPatients should be discharged from hospital when they are medically fit. However, discharges are often delayed for non-medical reasons including access to social care. One aim of local health and social care partnerships to improve urgent and emergency care in England (known as urgent and emergency care (UEC) vanguards) was to improve integration of health and social care, which could lead to fewer delays. Consequently, we aimed to assess the impact of UEC vanguards on delayed discharges from hospital (delayed transfers of care (DTOC)) in England.DesignUsing a synthetic control estimation method 29 local authorities (LAs) that were UEC vanguards partners were averaged into a single ‘treated’ unit and compared with a unit created using data from LAs that were not UEC vanguards partners to estimate the impact of UEC vanguards on DTOC. Sensitivity analysis included fixed effects panel regressions and various placebo tests.Setting150 LAs in England (excluding city of London and Isles of Scilly); 29 LAs were partners in UEC vanguards between August 2015 and March 2018.Primary outcome measureQuarterly data on days of DTOC at LA level for the period 2010–2017.ResultsSynthetic control estimation showed a large difference in DTOC days between UEC vanguards partner LAs compared with those that were not, with on average 23.7% lower DTOC per quarter (491 DTOC days per quarter). Fixed effect panel regressions found DTOC rates lower by 43.1% (99% CI 13.8% to 72.4%) in UEC partner LAs after the start of the vanguards programme. We found no indication of UEC partner LAs having lower DTOC rates prior to initiation of vanguards.ConclusionsThe evidence indicates a sizeable statistically significant impact of UEC vanguards on DTOC; however, more research is required to explain the underlying reasons for this relationship.

Objective: To identify and assess the preferences of people with long-term health conditions toward generalizable characteristics of self-management support interventions, with the objective to inform the design of more person-centered support services. Data Sources: Primary qualitative and quantitative data collected on a representative sample of individuals with at least one of the fifteen most prevalent long-term conditions in the UK. Study Design: Targeted literature review followed by a series of one-to-one qualitative semistructured interviews and a large-scale discrete choice experiment. Data Collection: Digital recording of one-to-one qualitative interviews, one-to-one cognitive interviews, and a series of online quantitative surveys, including two best-worst scaling and one discrete choice experiment, with individuals with long-term conditions. Principal Findings: On average, patients preferred a self-management support intervention that (a) discusses the options available to the patient and make her choose, (b) is individual-based, (c) face to face (d) with doctor or nurse, (e) at the GP practice, (f) sessions shorter than 1 hour, and (g) occurring annually for two-third of the sample and monthly for the rest. We found heterogeneity in preferences via three latent classes, with class sizes of 41% (C1), 30% (C2), and 29% (C3). The individuals’ gender [P

Older people in England who pay for social care from their own funds (‘self-funders’) receive little help in seeking and arranging care compared to older people funded by their local council. This suggests an implicit assumption that people funded by local councils need help to manage their care whereas self-funders do not. This article reports findings from a scoping review of published evidence from England, Scotland and Wales on the skills that older people need, and the help they get, to seek, arrange or manage use of social care, and how this help affects outcomes. Searches undertaken in October 2018 resulted in the inclusion of thirty-six empirical papers and seven reviews. Thematic analysis identified the importance of everyday life and specific business skills, and personal attributes including objectivity when evaluating options. The review identified two significant gaps in the evidence: first, how help in seeking and arranging care compensated for lack of, or complemented existing, skills; and secondly, how outcomes for people receiving help in arranging care compared with those not receiving help. The article concludes that a tailored approach to supporting older people arrange and manage care, irrespective of funding, should be considered.

Objectives Life story work involves gathering information about a person, their history and interests, and producing a tangible output, usually a book. It is used increasingly in dementia care. However, theory about if, how, and why it affects outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult. This article uses a systematic review to uncover theories of change and outcomes for life story work in dementia care. We describe the methods and their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Methods A systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of life story work to inform a feasibility study for the formal evaluation of life story work in dementia care. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit causal links between life story work and outcomes. We triangulated the review findings with qualitative research, which used focus groups with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from life story work. Results Of the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia, individual psychological outcomes, improved relationships between care staff and the individual with dementia, better care, more effective engagement of family members/carers within the care setting, and helping carers to cope. Twelve final theories linking these outcomes to life story work via a causal pathway were elicited. There was substantial overlap in the outcomes identified by the review and by carers, people with dementia, and professionals. Together, the results informed our choice of outcome measures for the pilot evaluation. Conclusions This approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un-theorized areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

Background Advanced nursing practice continues to develop internationally. Previous studies suggest advanced practice may lack support within nursing, which may lead to underutilisation, retention and patient safety issues. However, the relationship between the wider nursing profession and advanced practice is poorly understood and the theory that professional identity creates cultural barriers to advanced practice has received little empirical attention. Aims and Objectives To consider the relationship between professional nursing identity and advanced practice by exploring intra-professional relationships between advanced nurse practitioners and nursing colleagues. Aims and Objectives To consider the relationship between professional nursing identity and advanced practice by exploring intra-professional relationships between advanced nurse practitioners and nursing colleagues. Design and Methods Ethnographic methodology was adopted. Fieldwork methods were participant observation and semi-structured interviews. Participants were advanced nurse practitioners (n=9) and nursing colleagues (n=5) across two primary care general practice organisations. Data were analysed thematically using framework analysis, underpinned a priori by professional identity theories. Reporting was guided by COREQ. Results Three themes were identified which indicated how intra-professional relationships were conducted: Conciliating Nursing, where advanced nurse practitioners took responsibility for developing positive relationships with other nurses; Vertical Discounting, where nursing colleagues were dismissive and undermined advanced nurse practitioners, who themselves behaved similarly towards other nurses; Lateral Othering, where advanced nurse practitioners undermined other advanced nurse practitioners. Vertical Discounting and Lateral Othering destabilised advanced practice. Conclusion Intra-professional relationships, and the broader nursing profession, shape advanced practice. We theorize this is underpinned by threats to professional identity, while weak professional identity among even established advanced practitioners exacerbates lack of support. Highlighting these issues allows space to develop alternative strategies to negotiate intra-professional relationships, informed by professional identity theories, which support rather than inhibit advanced practice. Relevance to Clinical Practice As advanced practice expands throughout primary and secondary care, and across allied health professions, the impact of professional identity and relationships on healthcare will likely increase and the importance of strong advanced practice identity will become increasingly relevant. Keywords • Advanced Nursing Practice • Advanced Nurse Practitioners • General practice • Intra-professional • Professional Identity • Positioning Theory • Primary Care • Social Identity Theory

Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered, questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers.\ud \ud Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care:\ud WS1: Recruitment and follow-up of the DETERMIND cohort - 900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years.\ud WS2: Investigation of the extent of inequalities in access to dementia care\ud WS3: Relationship between use and costs of services and outcomes \ud WS4: Experiences of self-funders of care \ud WS5: Decision-making processes for people with dementia and carers\ud WS6: Effect of diagnostic stage and services on outcomes \ud WS7: Theory of Change informed strategy and actions for applying the research findings\ud \ud Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

Background Delayed transfers of care (DTOC) of patients from hospital to alternative care settings are a longstanding problem in England and elsewhere, having negative implications for patient outcomes and costs to health and social care systems. In England, a large proportion of DTOC are attributed to a delay in receiving suitable home care. We estimated the relationship between home care supply and delayed discharges in England from 2011 to 2016. Methods Reduced form fixed effects OLS models of annual DTOC attributed to social care at local authority (LA)-level from 2011 to 2016 were estimated, using both number of days and patients as the dependent variable. A count of home care providers at LA-level was utilised as the measure of home care supply. Demand (e.g. population, health, income) and alternative supply (e.g. care home places, local unemployment) measures were included as controls. Instrumental Variable (IV) methods were used to control for any simultaneity in the relationship between DTOC and home care supply. Models for DTOC attributed to NHS and awaiting a home care package were used to assess the adequacy of the main model. Results We found that home care supply significantly reduced DTOC. Each extra provider per 10 sq. km. in the average local authority decreased DTOC by 14.9% (equivalent to 449 days per year), with a per provider estimate of 1.6% (48 days per year). We estimated cost savings to the public sector over the period of analysis from reduced DTOC due to increased home care provision between £73 m and £274 m (95% CI: £0.24 m to £545.3 m), with a per provider estimate of savings per year of £12,600 (95% CI: £900 to £24,500). Conclusion DTOC are reduced in LAs with better supply of home care, and this reduces costs to the NHS. Further savings could be achieved through improved outcomes of people no longer delayed. Appropriate levels of social care supply are required to ensure efficiency in spending for the public sector overall.

Disabled people are under-represented and can experience discrimination in the workplace in the UK and globally. The employment of a Workplace Personal Assistant (WPA) is an option for disabled people who require assistance to undertake their job role. The WPA role is designed to increase the accessibility of the workplace via personalised and self-directed assistance, yet is little known or understood. The dynamics of these assistance relationships are explored from analysis of interviews with disabled people, their WPAs and representatives of the organisations in which they work. Disabled people who use a WPA undertake two jobs in one day: their substantive role and the management of their WPA. Understanding these dual roles, and recognising the subtle skills required and additional labour undertaken, can help to challenge the ableist assumptions that shape the workplace and help open up the workplace for disabled people who require a WPA.

This paper considers the experiences of older self-funders in England in the context of policies promoting choice and control. Self-funders are people who are not state-funded; they pay for social care from their own resources. Choice and control have been operationalized through personal budgets, based on the assumption that managing resources enhances ability to access appropriate care and support. This paper uses data from 40 qualitative interviews with self-funders and their relatives, and 19 with professionals. It explores the impact of the financial and social capital that self-funders are assumed to have and asks how older selffunders experience choice and control. The study found that older self-funders drew on personal experiences, family, and friends for information; were reluctant to spend their wealth on care due to competing priorities; and felt they had more control over the timing of decisions than people who were state-funded. Personal wealth appears to be perceived differently to funds “gifted” to people through cash for care schemes

Employment rates in England for disabled people are persistently lower than for non-disabled people. Support from a Workplace Personal Assistant is one way of narrowing this gap. Personal assistance is an empowerment-driven model in which the disabled person controls their support: who provides it, when, how and where. Previous research has focused on the personal assistant role in the home setting. This article draws on data from 32 qualitative interviews in the first UK study to explore personal assistance in the workplace for people with physical and /or sensory impairments. To maintain their enabling role in this external setting, Workplace Personal Assistants needed to strive for occupational invisibility when among the disabled workers’ colleagues: to ‘exist but not exist’. This article examines the Workplace Personal Assistant role as invisible work, applying Hatton’s conceptual framework. The analysis contributes to understanding of workplace personal assistance and ways in which mechanisms can intersect to produce multiple invisibility.

Context: Social care-related decisions can be complex but despite their widespread use in health care to help patients make similarly complex decisions, the use of decision aids in social care is not well examined.Objective: To review the international research evidence on decision aids in adult social care and investigate the availability of such aids for planning later life care on adult social care-related websites in England.Methods: Decision aid was defined broadly. Systematic searches for empirical research evidence published in English between 2000 and 2020. Searches were undertaken in January and February 2020. Websites of 11 UK social care-related voluntary and quasi-governmental organisations plus 53 English local councils searched for decision aids.Findings: Five papers published between 2001 and 2019 reported the development of five different decision aids. Two decision aids were web-based; three were paper-based or of unspecified formats. Two were assessed against international criteria for decision aids. Three further papers reported evaluations of the effectiveness of two of these aids.Most social care-related websites searched did not offer any relevant decision tools.Limitations: Some papers described tools that were primarily research instruments. Relevant papers may have been missed due to technical challenges. Not all council websites were searched.Implications: Future research to develop decision aids might benefit from drawing on earlier literature about people’s attitudes to and readiness to engage with care planning and how this translates into willingness to use decision aids. Combining decision aids with strengths- and asset-based approaches in adult social care practice could be fruitful.

Delayed transfers of care (DTOC), often unhelpfully referred to as ‘bed blocking’, has become a byword for waste and inefficiency in healthcare systems throughout the world. An estimated 2.7 million bed days are occupied each year in England by older people no longer in need of acute treatment, estimated to cost £820 million (2014/15) in inpatient care. Policy and media attention have often been drawn to this narrative of financial waste, resulting in policy setting that directly targets the level of DTOC, but has done little to put patient health first. These figures and policies portray a misleading image of the delays as primarily of concern in terms of their financial burden on acute hospital care, with little consideration given to the quantification on patient health or wider societal impacts. In spite of the multi-factorial decision-making process that occurs for each patient discharge, current evaluation frameworks and national policy setting fail to reflect the complexity of the process. In this commentary, we interrogate the current approach to the quantification of the DTOC impact and explore how policies and evaluation methods can do more to reflect the true impact of the delays.

Objectives: To assess the relationship between Urgent and Emergency Care (UEC) Vanguards, which include as an aim the integration of healthcare and social care sectors, and Delayed Transfers of Care (DTOC) at Local Authority level in England. Methods: Difference-in-difference and fixed effects panel estimations were used to compare DTOC between UEC partner site Local Authorities with non-UEC Local Authorities employing quarterly data on days of DTOC from Local Authorities in England for the period 2010 to 2017. Robustness checks included employing Ordinary Least Squared (OLS) and synthetic control estimations; differences between the UEC and non-UEC sites were checked prior to the start of the Vanguards. Results: A statistically significant negative relationship was found between UEC Vanguards and DTOC rates that is robust to various specification checks with no indication of UEC participant sites having lower DTOC rates prior to the start of the initiative. Conclusions: UEC Vanguards appear to be associated with 40.5% lower DTOC rates at 1% significance level compared with other English Local Authorities. The empirical evidence indicates a statistically significant impact; however, more research is required to explain the reasons for this relationship.

Context: Experience of loneliness amongst care home residents with sight loss is associated with limitations in activities of daily living, poor self-reported health, and increased rates of depression. Care homes are encouraged to use screening tools to identify those at risk of loneliness.Objectives: The study aimed to describe the findings and experience of applying a validated, multi-item scale to identify loneliness and isolation in care home residents with sight loss in England, UK.Methods: The six-item De Jong Gierveld Loneliness Scale was administered to residents residing in long-term care homes with sight loss. Participants were aged 65+ years old with vision impairment that could not be corrected by glasses. Descriptive analysis of loneliness scale data was undertaken supplemented with observational field notes of implementation challenges.Findings: Only 42 applications of the De Jong Gierveld Loneliness Scale were possible. The mean sub-scale scores for emotional loneliness, social loneliness and the mean overall loneliness score were 1.36 (sd = 1.16), 1.19 (sd = 1.04) and 2.55 (sd = 1.9) respectively. Challenges observed in scale administration and understanding of scale items by residents might preclude it as a loneliness case-identification tool in busy care home environments.Limitations: The study reports on the challenges implementing a questionnaire which achieved a low rate of data collection.Implications: For case-identification of loneliness, care homes may wish to consider use of a single-item loneliness question rather than multi-item scales due to variable length of administration and resident comprehension.

Context: Vision rehabilitation (VR) services in England promote users’ health and wellbeing, and support all aspects of daily living through two dominant models: in-house and contracted-out VR services. The two models differ in terms of service delivery, but they share a common aim to enhance service users’ quality of life and reduce utilisation of social and health care services.Objective: This study investigated the cost-effectiveness of in-house versus contracted-out VR services.Methods: The analysis was performed from a social care perspective and a social and health care perspective. The analyses used data from a six-month follow-up observational study of VR users. Regression analysis was used to estimate differential outcomes and costs, taking user and local authority characteristics into account.Findings: At a cost-effectiveness threshold of £13,000 and £30,000 per QALY, in-house VR services have a high probability (greater than 90% vs. contracted-out VR services) of being cost-effective from a social care perspective. In-house VR services have a lower probability (lower than 25% vs. contracted-out VR services) of being cost-effective from a social and health care perspective.Limitations: Observational studies are prone to selection bias compared to randomised controlled trials due to confounding. We employed econometric techniques that control for several user and LA characteristics to reduce potential bias.Implications: Contracted-out VR services may be better value for money compared to in-house VR services in the context of integrated social and health care due to substantial healthcare resource savings.

Aim\ud The aim of this study was to summarize reviews of family‐focused care interventions that support families with a family member with a long‐term condition across the life course.\ud \ud \ud \ud Design\ud \ud Umbrella review.\ud \ud Data sources\ud Medline (1946–2019), Cochrane Database of Systematic Reviews (2019), Database of Abstracts of Reviews of Effect and EMBASE (1947–2019), CINAHL (1981–2019), Health Technology Assessment Database (2019) and PsycInfo (1806–2019).\ud \ud Review Methods\ud All authors independently undertook title/abstract screening, data extraction and quality appraisal on a cluster of papers, working in groups of two or three to reach a consensus. The AMSTAR tool was used to appraise the quality of the studies and descriptive syntheses were undertaken.\ud \ud Results\ud Fifteen reviews met the selection criteria. Overall family‐focussed care and associated terms were poorly defined. Typically interventions were educational or psychological therapy/counselling with the goal of empowering individuals to manage their condition. There is some evidence that family‐focused care interventions can improve clinical/biological health measures and self‐care outcomes such as treatment adherence. Multicomponent psychosocial interventions that include cognitive‐behavioural therapy, skills training, education and support and are focused on wider family members appear to improve family relationships and martial functioning.\ud \ud Conclusion\ud Long‐term conditions have an impact on individual and family health and well‐being, yet the impact of family‐focused care interventions on family outcomes was overall inconclusive. A better understanding of how family‐focused care interventions improve the health and well‐being of individuals and their families is needed to promote the inclusion of family‐focused care into practice.\ud \ud Impact\ud Supporting people with a long‐term condition is a key health and social care priority. Family‐focused care interventions have potential to improve the health and well‐being of individuals and families, but there is a need to evaluate their clinical and cost‐effectiveness. The findings from this review could be used by funding bodies when commissioning research for long‐term conditions.

Loneliness is a serious societal concern, especially the loss of social connections in later life. Those with sight loss living in care homes are thought to face particular challenges in social engagement, but research is scarce. This study aimed to examine the experience of loneliness amongst residents with sight loss; the different dimensions of loneliness; and their attitudes about the role of care homes in addressing these needs. Through in-depth interviews with 18 residents, supplemented by interviews with family members and care home managers, the research identified that residents were generally satisfied with their social situation. However, there was evidence that sight loss was not appropriately accommodated within the care home. In their efforts to enable all residents to engage in social activities, attempts to include those with sight loss could feel contrived, and residents with sight loss did not feel meaningfully involved. Residents described barriers to forming close associations, including the challenges of background noise in communal spaces and a sense that conversation in the care home lacked stimulation. Residents felt that opportunities to forge and maintain bonds with people outside the care home were limited. The research concludes that care homes should avoid inclusion-for-inclusion's sake, and future research could study the effectiveness of interventions to improve care home links to the wider community.

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

BackgroundIncreasing demand and expanded primary care provision, coupled with a reduced GP workforce, present challenges for primary care. New workforce models aim to reduce GP workload by directing patients to a variety of alternative clinicians. Concurrently, the principle of patient choice in relation to healthcare providers has gained prominence. It is, therefore, necessary to provide patients with sufficient information to negotiate access to appropriate primary healthcare professionals.AimTo explore how practice websites present three exemplar healthcare professional groups (GPs, advanced nurse practitioners [ANPs], and practice nurses [PNs]) to patients and the implications for informing appropriate consultation choices.Design and settingQualitative thematic analysis of a sample of general practice websites.MethodIn total, 79 accessible websites from a metropolitan district in the north of England were thematically analysed in relation to professional representation and signposting of the three identified professional groups.ResultsInformation about each group was incomplete, inconsistent, and sometimes inaccurate across the majority of general practice websites. There was a lack of coherence and strategy in representation and direction of website users towards appropriate primary healthcare practitioners.ConclusionLimited and unclear representation of professional groups on general practice websites may have implications for the direction of patients to the wider clinical healthcare team. Patients may not have appropriate information to make choices about consulting with different healthcare practitioners. This constitutes a missed opportunity to signpost patients to appropriate clinicians and enhance understanding of different professional roles. The potential for websites to disseminate information to the public is not being maximised.

Purpose Keeping individuals safe from harm and exploitation is a clearly articulated goal within both the health and social care sectors. Two key concepts associated with achieving this common aim are safety and safeguarding. The purpose of this paper is to critically appraise the differences in safety terminology used in health and social care, including opportunities and challenges for greater integration of safety systems across health and social care in England. Design/methodology/approach This paper presents the authors’ viewpoint based on personal, professional and research experience. Findings In healthcare, safety is usually conceptualised as the management of error, with risk considered on a universal level. In social care, the safeguarding process balances choice and control with individualised approaches to keeping adults safe, but lacks the established reporting pathways to capture safety incidents. Efforts to safely integrate health and social care services are currently constrained by a lack of shared understanding of the concepts of safety and safeguarding without further consideration of how these approaches to keeping people safe can be better aligned. As such, there is a need for a single, unified discourse of patient safety that cuts across the patient safety and safeguarding concepts and their associated frameworks in health and social care settings. Originality/value A single unified concept of safety in health and social care could coincide with an integrated approach to the delivery of health and social care, improving the care of patients transitioning between services.

Background Open and honest discussion between healthcare providers and patients and families affected by error is considered to be a central feature of high quality and safer patient care, evidenced by the implementation of open disclosure policies and guidance internationally. This paper discusses the perceived enablers that UK doctors and nurses report as facilitating the enactment of open disclosure. Methods Semistructured interviews with 13 doctors and 22 nurses from a range of levels and specialities from 5 national health service hospitals and primary care trusts in the UK were conducted and analysed using a framework approach. Results Five themes were identified which appear to capture the factors that are critical in supporting open disclosure: open disclosure as a moral and professional duty, positive past experiences, perceptions of reduced litigation, role models and guidance, and clarity. Conclusion Greater openness in relation to adverse events requires health professionals to recognise candour as a professional and moral duty, exemplified in the behaviour of senior clinicians and that seems more likely to occur in a nonpunitive, learning environment. Recognising incident disclosure as part of ongoing respectful and open communication with patients throughout their care is critical.

Background Current models of patient‐enacted involvement do not capture the nuanced dynamic and interactional nature of involvement in care. This is important for the development of flexible interventions that can support patients to ‘reach‐in’ to complex health‐care systems. Objective To develop a dynamic and interactional model of patient‐enacted involvement in care. Search strategy Electronic search strategy run in five databases and adapted to run in an Internet search engine supplemented with searching of reference lists and forward citations. Inclusion criteria Qualitative empirical published reports of older people's experiences of care transitions from hospital to home. Data extraction and synthesis Reported findings meeting our definition of involvement in care initially coded into an existing framework. Progression from deductive to inductive coding leads to the development of a new framework and thereafter a model representing changing states of involvement. Main results Patients and caregivers occupy and move through multiple states of involvement in response to perceived interactions with health‐care professionals as they attempt to resolve health‐ and well‐being‐related goals. ‘Non‐involvement’, ‘information‐acting’, ‘challenging and chasing’ and ‘autonomous‐acting’ were the main states of involvement. Feeling uninvolved as a consequence of perceived exclusion leads patients to act autonomously, creating the potential to cause harm. Discussion and conclusion The model suggests that involvement is highly challenging for older people during care transitions. Going forward, interventions which seek to support patient involvement should attempt to address the dynamic states of involvement and their mediating factors.

Context: Ageing populations across the world make the provision of long-term care a global challenge. A growing number of people in England are faced with paying for later life social care costs, but do little to plan for these costs in advance. Recent legislation in the form of the Care Act 2014 gave local authorities new responsibilities to provide infor­mation on how people can access independent financial advice on matters relating to care needs.Objectives: This scoping review aimed to identify existing evidence about people’s engagement with financial advice in relation to paying for later life care in England.Methods: Electronic and manual searching identified seventeen papers reporting empirical evidence on the topic, published between 2002 and 2017.Findings: We found evidence of low numbers accessing regulated financial advice. Barriers included limited consumer awareness, preferences for other sources of advice such as friends and family, and poor signposting and refer­rals by local authorities. Most papers indicated that financial advice would be useful in helping people to plan for care costs. Robust research evidence on this topic is limited, with particular gaps in evidence about stakeholders’ experiences of the barriers to, and usefulness of, financial advice about paying for long-term care in later life.Limitations: The paper does not include a formal quality assessment of the included research papers. Our interpreta­tion of study findings was hindered by lack of methodological transparency in some papers and lack of studies focusing specifically on the topic of financial planning for long-term care. Implications: An improved evidence base could assist financial advisers specialising in this area and local authori­ties that are now obliged to signpost people to such advice. With better evidence they would be better placed to explain to members of the public the financial and non-financial implications of obtaining financial advice about care costs. It might also enable those organisations to overcome barriers and facilitate access to appropriate advice.

BackgroundChildren’s community nursing (CCN) services support children with acute, chronic, complex and end-of-life care needs in the community.ObjectivesThis research examined the impact of introducing and expanding CCN services on quality, acute care and costs.MethodsA longitudinal, mixed-methods, case study design in three parts. The case studies were in five localities introducing or expanding services. Part 1: an interrupted time series (ITS) analysis of Hospital Episode Statistics on acute hospital admission for common childhood illness, and bed-days and length of stay for all conditions, including a subset for complex conditions. The ITS used between 60 and 84 time points (monthly data) depending on the case site. Part 2: a cost–consequence analysis using activity data from CCN services and resource-use data from a subset of families (n = 32). Part 3: in-depth interviews with 31 parents of children with complex conditions using services in the case sites and a process evaluation of service change with 41 NHS commissioners, managers and practitioners, using longitudinal in-depth interviews, focus groups and documentary data.FindingsPart 1: the ITS analysis showed a mixed pattern of impact on acute activity, with the greatest reductions in areas that had rates above the national average before CCN services were introduced and significant reductions in some teams in acute activity for children with complex conditions. Some models of CCN appear to have more potential for impact than others. Part 2: the cost–consequence analysis covered only part of the CCN teams’ activity. It showed some potential savings from reduced admissions and bed-days, but none that was greater than the total cost of the services. Part 3: three localities implemented services as planned, one achieved partial service change and one was not able to achieve any service change. Organisational stability, finance, medical stakeholder support, competition, integration with primary care and visibility influenced the planning and implementation of new and expanded CCN services. Feeling supported to manage their ill child at home was a key outcome of using services for parents. Various service features contributed to this and were important in different ways at different times. Other outcomes included being able to avoid hospital care, enabling the child to stay in school, and getting respite. Although parents judged that care was of high quality when teams enabled them to feel supported, reassured and secure in managing their ill child at home, this did not depend on a constant level of contact from teams.LimitationsDelays in service reconfigurations required adaptation of research activity across sites. Use of administrative data, such as Hospital Episode Statistics, for research purposes is technically difficult and imposed some limitations on both the ITS and the cost–consequence analyses.ConclusionsLarge, generic CCN teams that integrate acute admission avoidance for all children with support for children with complex conditions and highly targeted teams for children with complex conditions offer the possibility of supporting children more appropriately at home while also making some difference to acute activity. This possibility remains to be tested further.Future workFurther work should refine the evidence on outcomes of services by looking at outcomes in promising models, value for money and measuring quality-based outcomes.FundingThe National Institute for Health Research Health Services and Delivery Research Programme.

IntroductionLength of hospital inpatient stays have reduced. This benefits patients, who prefer to be at home, and hospitals, which can treat more people when stays are shorter. Patients may, however, leave hospital sicker, with ongoing care needs. The transition period from hospital to home can be risky, particularly for older patients with complex health and social needs. Improving patient experience, especially through greater patient involvement, may improve outcomes for patients and is a key indicator of care quality and safety. In this research, we aim to: capture the experiences of older patients and their families during the transition from hospital to home, and identify opportunities for greater patient involvement in care, particularly where this contributes to greater individual-level and organisational-level resilience.Methods and analysisA ‘focused ethnography’ comprising observations, ‘Go-Along’ and semistructured interviews will be used to capture patient and carer experiences during different points in the care transition from admission to 90 days after discharge. We will recruit 30 patients and their carers from six hospital departments across two National Health Service (NHS) Trusts. Analysis of observations and interviews will use a framework approach to identify themes to understand the experience of transitions and generate ideas about how patients could be more actively involved in their care. This will include exploring what ‘good’ care at transitions looks like and seeking out examples of success, as well as recommendations for improvement.Ethics and disseminationEthical approval was received from the NHS Research Ethics Committee in Wales. The research findings will add to a growing body of knowledge about patient experience of transitions, in particular providing insight into the experiences of patients and carers throughout the transitions process, in ‘real time’. Importantly, the data will be used to inform the development of a patient-centred intervention to improve the quality and safety of transitions.

RATIONALE, AIMS AND OBJECTIVES: Restricted randomization, such as blocking or minimization, allows for the creation of balanced groups and even distribution of covariates, but it increases the risk of selection bias and technical error. Various methods are available to reduce these risks but there is limited evidence about their current usage, and there are also indications that reporting of these methods may not be adequate. This review aims to identify how frequently different methods of restriction are being used and to assess the reporting of these methods against established reporting standards. METHODS: 82 reports of randomized controlled trial were reviewed. For each trial, the reported method of randomization was recorded and the reporting of randomization was assessed. Where the method of randomization was not clear from the main paper, protocols and other published materials were also reviewed, and authors were contacted for further information. RESULTS: For 11% of trials the method of randomization was not reported in either the paper or a published protocol, and in a further 39% of cases the report omitted key details so that the predictability of the method could not be evaluated. In total, 88% of trials appear to have used some form of restricted randomization, and all of those that report the exact methods used either blocking or minimization. 15% of trials reported using blocks of six or less and 4% used minimization with no random element reported, both of which are highly predictable. CONCLUSION: Our results indicate that the majority of trials use some form of restriction, with many using relatively predictable methods that put them at greater risk of selection bias and technical error. Reporting of randomization methods often falls short of the minimum requirements set out by the CONSORT statement, leaving the reader unable to make an informed judgement about the risk of bias. Language: en

Discussion of unanticipated problems in care with patients and their families (‘open disclosure’) is now widely advocated. Despite international efforts and the introduction of a range of policies and guidance to promote such discussions, the expectations of policy makers and patients are often not matched in practice. We consider some reasons for the persistence of shortfalls in the occurrence and quality of open disclosure. We draw on research conducted to investigate the implementation of a ‘ Being open’ policy in England, reflecting particularly on insights derived from interviews with health care professionals. Health care professionals were broadly supportive of the idea of open disclosure. Some expressed well-recognized concern about punishment and being blamed, but this did not appear to be the main driver of their communication practices. Their accounts of what happened around particular problems in health care indicated that they brought a complex range of considerations to bear on questions of whether and how these were discussed with patients and relatives. Guidance about open disclosure based on assessments of levels of harm to patients can complicate and perhaps distort health care professionals’ approaches, particularly when the extent and/or cause of harm was uncertain. Health care professionals who engage in open disclosure must be able to negotiate appropriate ways through complex and sensitive discussions. The responses of patients and relatives are not always predictable and even the best open disclosure practice may not resolve problems and concerns. Guidance, training and support for staff need to reflect these challenges.

Background There is evidence to suggest that component randomized controlled trials (RCTs) within systematic reviews may be biased. It is important that these reviews are identified to prevent erroneous conclusions influencing health care policies and decisions. Purpose To assess the likelihood of bias in trials in 12 meta-analyses. Design A review of 12 systematic reviews. Data Sources Twelve recently published systematic reviews with 503 component randomized trials, published in the British Medical Journal , The Lancet , Journal of the American Medical Association , and The Annals of Internal Medicine before May 2012. Study Selection and Data Extraction Systematic reviews were eligible for inclusion if they included only RCTs. We obtained the full text for the component RCTs of the 12 systematic reviews (in English only). We extracted summary data on age, number of participants in each treatment group, and the method of allocation concealment for each RCT. Data Synthesis Five of the 12 meta-analyses exhibited heterogeneity in age differences (I 2 > 0.30), when there should have been none. In two meta-analyses, the age of the intervention group was significantly greater than that of the control group. Inadequate allocation concealment was a statistically significant predictor of heterogeneity in one trial as observed by a metaregression. Conclusions Most of the sample of recent meta-analyses showed that there were signs of imbalance and/or heterogeneity in ages between treatment groups, when there should have been none. Systematic reviewers might consider using the techniques described here to assess the validity of their findings.

Objective To investigate the feasibility of conducting a cohort, factorial randomized controlled trial (RCT) in the treatment of patients with low back pain (LBP). Study Design and Setting Pragmatic feasibility factorial RCT nested within an observational cohort study in two general practices in York, United Kingdom. Results Eight hundred forty-five patients aged between 18 and 65 years who had consulted their general practitioner about LBP within the preceding 12 months were mailed an invitation to participate in a cohort trial, with the possibility of later joining a treatment RCT. One hundred twenty-four patients consented to participate in the cohort and treatment trial, and one consented only to the cohort only. Ultimately, 59 patients were randomized into the nested RCT. Outcomes included recruitment, acceptability, and attrition rates as measures of the feasibility of the design and Roland Morris Disability Questionnaire. No statistically significant differences in outcome between treatment groups and usual care were found. Conclusions The design was feasible for the evaluation of different back pain treatments. We found zero attrition after randomization and showed that for a remitting relapsing condition, the design allows us to recruit initially ineligible patients from the cohort. Additional statistical analysis using regression discontinuity can also be used with this design.

BackgroundIn 2009 the UK National Patient Safety Agency relaunched its Being Open framework to facilitate the open disclosure of adverse events to patients in the NHS. The implementation of the framework has been, and remains, challenging in practice.AimThe aim of this work was to both critically evaluate and extend the current evidence base relating to open disclosure, with a view to supporting the implementation of a policy of open disclosure of adverse events in the NHS.MethodsThis work was conducted in three phases. The first phase comprised two focused systematic literature reviews, one summarising empirical research on the effectiveness of interventions to enhance open disclosure, and a second, broader scoping review, looking at reports of current opinion and practice and wider knowledge. The second phase involved primary qualitative research with the objective of generating new knowledge about UK-based stakeholders’ views on their role in and experiences of open disclosure. Stakeholder interviews were analysed using the framework approach. The third phase synthesised the findings from the first two phases to inform and develop a set of short pragmatic suggestions for NHS trust management, to facilitate the implementation and evaluation of open disclosure.ResultsA total of 610 papers met the inclusion criteria for the broad review. A large body of literature discussed open disclosure from a number of related, but sometimes conflicted, perspectives. Evidential gaps persist and current practice is based largely on expert consensus rather than evidence. There appears to be a tension between the existing pragmatic guidance and the more in-depth critiques of what being consistent and transparent in health care really means. Eleven papers met the inclusion criteria for the more focused review. There was little evidence for the effectiveness of disclosure alone on organisational or individual outcomes or of interventions to promote and support open disclosure. Interviews with stakeholders identified strong support for the basic principle of being honest with patients or relatives when someone was seriously harmed by health care. In practice however, the issues are complex and there is confusion about a number of issues relating to disclosure policies in the UK. The interviews generated insights into the difficulties perceived within health care at individual and institutional levels, in relation to fully implementing the Being Open guidance.ConclusionsThere are several clear strategies that the NHS could learn from to implement and sustain a policy of openness. Literature reviews and stakeholder accounts both identified the potential benefits of a culture that was generally more open (not just retrospectively open about serious harm). Future work could usefully evaluate the impact of disclosure on legal challenges within the NHS, best practice in models of support and training for open disclosure, embedding disclosure conversations in critical incident analysis and disclosure of less serious events.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

The disclosure of adverse events to patients or their families who have been affected is considered to be a central feature of high quality and safer patient care, but despite this, as few as 30% of harmful errors may currently be disclosed to patients. Advocates of open disclosure propose that failing to communicate effectively with patients following adverse events may have negative repercussions for all stakeholders. The disclosure of adverse events and errors to patients and their families is partly fulfilling the duty of candour advocated in the numerous recent reports into the quality and safety within the NHS. This paper considers why disclosure remains challenging for organisations and professionals alike, despite guidance and in a clear moral imperative and commitment from stakeholders to transparency in healthcare.