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Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using ‘positive’ styles and the protective use of ‘negative’ disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Background: The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. Methods: Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. Findings: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. Conclusion: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the ‘digital divide’ and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

Supplemental Material for Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic by Carmen Colclough, Eleanor Miles, Rotem Perach, Ben Hicks, Josie Dixon, Jennifer Rusted, Kate Gridley, Yvonne Birks, Margaret Dangoor, Paul Donaghy, Riona Mcardle, Elen Moseley, Harsharon K. Sondh, Sube Banerjee in Dementia

Background and Objectives: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as ‘active social agents’, we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. Research Design and Methods: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. Findings: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to ‘get out’ into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of ‘nodding acquaintances’; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to ‘get out’; and employing similar emotional coping strategies for the pandemic and dementia. Conclusions: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, ‘safety-netting’ through the availability of a named professional, advocacy and support and use of ‘check-in calls’ and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

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 paper 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 second, how outcomes for people receiving help in arranging care compared with those not receiving help. The paper concludes that a tailored approach to supporting older people arrange and manage care, irrespective of funding, should be considered.

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 which shape the workplace and help open up the workplace for disabled people who require a WPA.

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.

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 vs 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 6-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 XX% 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.

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

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.

Supplemental material, HSR897091 Supplemental Material for Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia by Gillian Parker, Kate Gridley, Yvonne Birks and Julie Glanville in Journal of Health Services Research & Policy

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

Introduction: Lengths 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- and organisational-level resilience. Methods and Analysis: A ‘focused ethnography’ comprising observations, ‘Go-Along’ and semi-structured 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 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 look like and seeking out examples of success, as well as recommendations for improvement. Ethics and dissemination: Ethical 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.

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.

Aims Recent years has seen an increasing shift towards providing care in the community, epitomised by the role of Children’s Community Nursing (CCN) teams. However, there have been few attempts to use robust evaluative methods to interrogate the impact of such services. This study sought to evaluate whether reduction in secondary care costs, resulting from the introduction of two CCN teams, were sufficient to offset the additional cost of commissioning. Methods Among the potential benefits of the CCN teams is a reduction in the burden placed on secondary care through the delivery of care at home, it is this potential reduction which is evaluated in this study via a two part analytical method. Firstly, an interrupted time-series analysis utilised Hospital Episode Statistics data to interrogate any change in total paediatric bed days as a result of the introduction of two teams. Secondly, a costing analysis compared the cost savings from any reduction in total bed days with the cost of commissioning the teams. This study used a retrospective longitudinal study design as part of the TraCCS trial, which was conducted between June 2012 and June 2015. Results A reduction in hospital activity after introduction of the two nursing teams was found, (9,634 and 8,969 fewer bed days), but this did not reach statistical significance. The resultant cost saving to the NHS was less than the cost of employing the teams. Conclusion The study represents an important first step in understanding the role of such teams as a means of providing a high quality of paediatric care in an era of limited resource. While the cost saving from released paediatric bed days was not sufficient to demonstrate cost effectiveness, the analysis does not incorporate wider measures of healthcare utilisation and non-monetary benefits resulting from the CCN teams.

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. 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. 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: In 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. Aim: The 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. Methods: This 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. Results: A 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. Conclusions: There 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.

To assess the use of the h-index to measure the quality of the output of health services researchers.

To determine the health-related experiences of children with congenital heart disease.Qualitative, semi-structured interviews.A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England.The main themes identified included: physical limitations of their condition; restrictions; attitudes of others; choices about information; coping with life and privacy.This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.

Objective To assess whether supplementation with calcium and cholecaliferol (vitamin D3) reduces the risk of fracture in women with one or more risk factors for fracture of the hip.

Employment rates in England for disabled people are persistently lower than for non-disabled people. Support from a Workplace Personal Assistant (WPA) 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 PA role in the home setting. This article draws on data from thirty-two 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, WPAs needed to strive for occupational invisibility when among the disabled workers’ colleagues: to ‘exist but not exist’. This article examines the WPA role as invisible work, applying Hatton’s (2017) conceptual framework. The analysis contributes to understanding of workplace personal assistance and ways in which mechanisms can intersect to produce multiple invisibility.