People with dementia and their carers are a growing subgroup of people who use community-based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care-related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy-report when someone is unable to self-report. The ASCOT-Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy-reported by carers) and their carers. Data were collected via a self-administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self-complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. We recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self- and proxy-report. Key influences on carers' own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic-related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.

The UK long-term care workforce has endured difficult working conditions for many years. During the pandemic, the sector faced unprecedented challenges, which further exacerbated these conditions and brought concerns about workplace abuse and violence. Such experiences can vary by personal and work characteristics, particularly affecting minority ethnic groups. They can subsequently impact workers' wellbeing and the sector overall. Drawing on the first wave of a UK longitudinal workforce survey, this article examined the impact of COVID-19 on social care workers' working conditions, general health and wellbeing, and intentions to leave the employer and sector altogether. The analysis is based on both quantitative and qualitative responses 1037 valid responses received between April and June 2021. The respondents were predominantly female, working in direct care roles and mainly serving older adults (including those with dementia). The findings highlighted worrying experiences of abuse in relation to COVID-19, which differed significantly by nationality, ethnicity and care settings. The analysis further showcased the negative impact of experienced abuse on work-life balance and intentions to leave the current employer or the care sector altogether. The findings emphasise the need for targeted measures that promote workers' physical, emotional and financial wellbeing.

Reforms to social-care in response to the COVID-19 pandemic, in the UK and internationally, place data at the heart of proposed innovations and solutions. The principles are not well established of what constitutes core, or minimum, data to support care home residents. Often, what is included, privileges data on resident health over day-to-day care priorities and quality of life. This Personal View argues for evidence-based principles to base the development of a UK minimum data set (MDS) for care homes. Co-produced work involving care home staff and older people working with stakeholders is required to define and agree the format, content, structure and operationalisation. Implementation decisions will determine the success of an MDS, impacting aspects including data quality, completeness, and useability. Care home staff who collect the data need to benefit from the MDS and see value in their contribution and residents must derive benefit from data collection and synthesis.

Background: Measurement models inform the approach to assess a measure's validity and also how a measure is understood, applied and interpreted. With preference-based measures, it is generally accepted that they are formative; however, if they are applied without preferences, they may be reflective, formative or mixed. In this study, we sought to empirically test whether the reflective, formative or mixed measurement model best describes PBMs of social care-related quality of life (ASCOT, ASCOT-Carer). We also explored the network approach, as an alternative. Methods: ASCOT and ASCOT-Carer data were analyzed using confirmatory factor analysis and Multiple Indicators Multiple Causes models to test reflective, formative or mixed measurement models, respectively. Network analysis of partial correlations using the Gaussian graphical model was also conducted. Results: The results indicated that the reflective measurement model is the worst fit for ASCOT and ASCOT-Carer. The formative or mixed models may apply to ASCOT. The mixed model was the best fit for ASCOT-Carer. The network analysis indicated that the most important or influential items were Occupation and Personal cleanliness and comfort (ASCOT) and Time and space and Self-care (ASCOTCarer). Conclusions: The ASCOT and ASCOT-Carer are best described as formative/mixed or mixed models, respectively. These findings may guide the approach to the validation of cross-culturally adapted and translated versions. Specifically, we recommend that EFA be applied to establish structural characteristics, especially if the measure will be applied as a PBM and as a measure of SCRQoL. Network analysis may also provide further useful insights into structural characteristics.

Background: Long-term care (LTC) workers are subjected to structural and inherent difficult con-ditions that are likely to impact their quality of life at work; however, no agreed scale measures it. This study aims to develop a scale to measure the work-related quality of life among LTC work-ers in England (CWRQoL). The study establishes the domains/sub-domains of CWRQoL, inves-tigates the tool's utility, and collates information on existing supporting strategies for CWRQoL. Methods: We adopt a mixed-methods employing inductive/deductive processes at three stages: 1- a scoping review of the literature; 2- interviews and focus groups with frontline LTC workers, managers and LTC stakeholders and 3- a content validity consensus survey. Results: CWRQoL is composed of seven domains (and 23 sub-domains). Additional domains to those in the literature include financial wellbeing and managing grief and emotions associated with client death and end of life care. Stakeholders identified several benefits and challenges related to the CWRQoL tool's utility. COVID19 significantly impacted LTC workers' mental well-being and spillover between work and home. Conclusions: The study highlighted the complex nature of CWRQoL and provided a solid ground for developing and validating a CWRQoL scale.

Background: Care homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents. Methods: The realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations) as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature. Results: Fifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care Conclusions: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology. Registration: PROSPERO registration number CRD42020171323.

Abstract Background Care home staff have a critical bearing on quality. The staff employed, the training they receive and how well they identify and manage residents' needs are likely to influence outcomes. The Care Act 2014 (Great Britain. The Care Act 2014. London: The Stationery Office; 2014) requires services to improve 'well-being', but many residents cannot self-report and are at risk of exclusion from giving their views. The Adult Social Care Outcomes Toolkit enables social care-related quality of life to be measured using a mixed-methods approach. There is currently no equivalent way of measuring aspects of residents' health-related quality of life. We developed new tools for measuring pain, anxiety and depression using a mixed-methods approach. We also explored the relationship between care home quality, residents' outcomes, and the skill mix and employment conditions of the workforce who support them. Objectives The objectives were to develop and test measures of pain, anxiety and depression for residents unable to self-report; to assess the extent to which regulator quality ratings reflect residents' care-related quality of life; and to assess the relationship between aspects of the staffing of care homes and the quality of care homes. Design This was a mixed-methods study. Setting The setting was care homes for older adults in England. Participants Care home residents participated. Results Three measures of pain, anxiety and low mood were developed and tested, using a mixed-methods approach, with 182 care home residents in 20 care homes (nursing and residential). Psychometric testing found that the measures had good construct validity. The mixed-methods approach was both feasible and necessary with this population, as the majority of residents could not self-report. Using a combined data set (n = 475 residents in 54 homes) from this study and the Measuring Outcomes in Care Homes study (Towers AM, Palmer S, Smith N, Collins G, Allan S. A cross-sectional study exploring the relationship between regulator quality ratings and care home residents' quality of life in England. Health Qual Life Outcomes 2019;17:22) we found a significant positive association between residents' social care-related quality of life and regulator (i.e. Care Quality Commission) quality ratings. Multivariate regression revealed that homes rated 'good/outstanding' are associated with a 12% improvement in mean current social care-related quality of life among residents who have higher levels of dependency. Secondary data analysis of a large, national sample of care homes over time assessed the impact of staffing and employment conditions on Care Quality Commission quality ratings. Higher wages and a higher prevalence of training in both dementia and dignity-/person-centred care were positively associated with care quality, whereas high staff turnover and job vacancy rates had a significant negative association. A 10% increase in the average care worker wage increased the likelihood of a 'good/outstanding' rating by 7%. Limitations No care homes rated as inadequate were recruited to the study. Conclusions The most dependent residents gain the most from homes rated 'good/outstanding'. However, measuring the needs and outcomes of these residents is challenging, as many cannot self-report. A mixed-methods approach can reduce methodological exclusion and an over-reliance on proxies. Improving working conditions and reducing staff turnover may be associated with better outcomes for residents. Future work Further work is required to explore the relationship between pain, anxiety and low mood and other indicators of care homes quality and to examine the relationship between wages, training and social care outcomes. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 19. See the NIHR Journals Library website for further project information

Objectives: This study estimates the prevalence of unmet social care needs of people over 50 living in England with cancer and the effect of cancer on unmet needs. Methods: We used data from the English Longitudinal Study of Ageing. We estimated the mean, standard deviation and 95% CI of the prevalence of unmet social care needs among people with cancer. Logistic regression analysis with individual random effects was used to estimate the effect of cancer on unmet needs controlling for other determinants. Pain measures were included stepwise in the regression to estimate their mediating effect. Results: The prevalence rate of unmet social care needs among people living with cancer is 9% (SD=0.29; 95% CI: 8.3-10) compared to 6% (SD=0.24; 95% CI: 6.1-6.5) among people without cancer. People with cancer have significantly higher odds of having unmet needs by a factor of 1.44 (95% CI: 1.20-1.72), after controlling for the effect of other characteristics. Adding pain measures reduces the effect of cancer to a factor of 1.36 (95% CI: 1.14-1.64) in the odds of unmet needs but still remains statistically significant. Conclusions: A more integrated approach to cancer care is more likely to address the high level of unmet needs and consequent adverse implications.

Introduction: Care homes provide nursing and social care for older people who can no longer live independently at home. In the UK, there is no consistent approach to how information about residents' medical history, care needs, and preferences are collected and shared. This limits opportunities to understand the care home population, have a systematic approach to assessment and documentation of care, identify care home residents at risk of deterioration, and review care. Countries with standardised approaches to residents' assessment, care planning and review (e.g. Minimum Data Sets (MDS)) use the data to understand the care home population, guide resource allocation, monitor services delivery and for research. The aim of this realist review is to develop a theory-driven understanding of how care homes staff implement and use MDS to plan and deliver care of individual residents. Methods and analysis: A realist review will be conducted in three research stages. Stage one will scope the literature and develop candidate programme theories of what ensures effective uptake and sustained implementation of an MDS. Stage two will test and refine these theories through further iterative searches of the evidence from the literature to establish how effective uptake of an MDS can be achieved. Stage three will consult with relevant stakeholders to test or refine the programme theory (theories) of how an MDS works at the resident level of care for different stakeholders and in what circumstances. Data synthesis will use realist logic of analysis to align data from each eligible article with possible context-mechanism-outcome (CMO) configurations, or specific elements that answer the research questions. Ethics and dissemination: The University of Hertfordshire Ethics Committee has approved this study (HSK/SF/UH/04169). Findings will be disseminated through briefings with stakeholders, conference presentations, a national consultation on the use of an MDS in UK long-term care settings, publications in peer-reviewed journals, and in print and social media publications accessible to residents, relatives, and care home staff. Review registration number: This review protocol is registered on the International Prospective Register of Systematic Reviews (PROSPERO) - CRD42020171323.

This guide draws on a study which aimed to begin developing a care work-related quality of life tool for the adult social care workforce in England. We asked what matters most for care workers' quality of life at work, how it was supported by employers and what staff would find helpful in the future. These findings are summarised here, along with recommendations for actions. Our findings come from focus groups and interviews with frontline care workers (n=11), national level stakeholders involved in social care (n=12) and a consensus survey of their views and those of other experts in adult social care (n=35). The research was undertaken at a time of unprecedented pressure on the social care workforce in England: the COVID19 pandemic. Like the NHS, social care has been on the front line of the pandemic. However, unlike the NHS, social care is not a unified workforce with a professional identity. Social care is delivered by around 18,200 independent providers and many of its workforce are low-paid and under-valued. Turn-over within the sector is high and recruitment challenging, even for those with professional registration, such as social workers. Understanding and supporting people's quality of life at work is paramount if we want to retain skilled staff and ensure the best outcomes for those they care for. We want to thank all our participants, including our advisory group members, who contributed to the study and shared their experiences and expertise. Together they helped shape the recommendations in this guide, which we hope will inspire social care policy makers and leaders to create positive workplace cultures that nurture the wellbeing of staff and those they care for.

Adult social care is not so much invisible as ignored. The sector is chronically underfunded and undervalued, leading to a fragmented, dysfunctional system in which service users' needs are unmet and workforce's issues unrecognised. Resolving the invisibility of adult social care requires major changes, including transforming the public perception of adult social care, substantial investment in the workforce, and addressing the funding deficit. The invisibility of adult social care exacerbates the stigma experienced by people drawing on care services and their carers. Individuals belonging to marginalised groups are impacted by this to a greater extent. The current purpose of adult social care as defined by the Care Act is too narrow, reinforcing the notion of invisibility. The key challenges for the future are: ageing without children, availability of informal care, housing, the economics of care and the sustainability of the adult social care workforce. True integration of health and social care (from access to delivery) could reverse the fragmentation of the care sector and enable people to access the support they need when they need it.

Moves between care settings in later life are challenging for older people but are also sometimes unavoidable. Social care practitioners have a significant role in supporting older people moving into and between social care settings, but may lack understanding of the needs of older people and their carers as well as the confidence, guidance or knowledge of resources. The 'Better Care Moves' project seeks to provide practitioners and other stakeholders with coherent evidence and a practical toolbox that will be used to inform and support older people's moves into and between social care settings. As part of this project, we are undertaking a scoping review to identify and synthesise what is already known about key (unmet) move-related needs of older people and the approaches used by social care practitioners in supporting moves. We searched on seven electronic databases and grey literature including guidance, practice-related materials and reports from 26 websites. Inclusion criteria were: relates to moves of older people from home to a social care setting or between social care settings or from hospitals to social care settings, and relates to social care support or needs, with limits of dates (2010 onwards), language (English) and country (UK only). We screened 8535 records but found limited and fragmentary evidence about social care services around care moves. Our emerging themes include: experience and challenges during the move process (including planning, decision-making, moving-in and post-move), barriers and knowledge gaps in move-related social care practice and lessons from good practice schemes.

Objective: The study aimed to establish the factors related to the social care-related QoL of people living with dementia (proxy-report) and their carers (self-report). Methods: An online/postal survey of 313 carers in England was conducted from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia, who lived at home, was unable to self-complete a questionnaire (even with help), and used community-based long-term care. Multiple regression was applied to establish the factors related to the social care-related quality of life (SCRQoL) of carers (self-report, using ASCOT-Carer) and people with dementia (proxy-report, using ASCOT-Proxy). Findings: Factors related to carers' SCRQoL were their own health, financial difficulties associated with caring, and satisfaction with long-term care services. Inadequate home design was significantly negatively associated with SCRQoL for people living with dementia. The latter stages of pandemic-related restrictions in England (specifically, the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. Conclusion: The study offers insight into the factors associated with SCRQoL of people with dementia and their carers. The findings highlight the importance of adequate home design and environment for people with dementia. Satisfactory long-term care support and limiting any adverse financial impact of caring are important for carers. The findings indicate that there was a negative effect of COVID restrictions on SCRQoL of people with dementia.

People with dementia living at home represent a growing group of social care services users. Therefore, it is important to understand their outcome needs, the impact of care on their quality of life (QoL) and how community based social care services may best support them. However, it may be difficult to collect such information from people who have memory or communication difficulties, including people with moderate to severe dementia. To work around this, an adapted version of the ASCOT questionnaire, ASCOT-Proxy, has been developed. This is completed on behalf of a person by someone who knows them well – such as, a close friend or relative (unpaid carers). The aim of the present study was to understand whether ASCOT-Proxy is easy to complete and measure what it is intended to measure – that is, social care-related QoL (SCRQoL), which is defined as aspects of people's lives that might be affected by the use of social care services. The data collection is still ongoing and will be finalised by April 2021. Unpaid carers have been invited through NHS settings, the Join Dementia Research, carers' and other organisations and through social media. Preliminary analysis (n=141, 81.56% (115) females; mean age: 59.3years) indicates that ASCOT-Proxy is a feasible, valid and reliable measure of SCRQoL. There is also a difference between proxy report perspectives. Without the right tool we would be unable to tell what the needs of people with dementia, unable to self-report are or how effectively community-based social care services support them.

Background: Work-related quality (WRQoL) of life has become an important concept internationally across different professions including adult social care and is one of the factors associated with higher retention. More importantly, in adult social care, WRQoL is linked to the quality of services provided and outcomes related to patients and service users. Objective: The main objective was to understand how WRQoL has been defined and measured in the literature and to map key components of WRQoL among those working in adult social care and other similar contexts. Design: We conducted the scoping review following the updated guidance by the Joanna Briggs Institute and a pre-defined study protocol. Reporting followed the PRISMA Extension for Scoping Reviews (PRISMA-ScR) checklist. Data sources: We performed an electronic literature search of eight major databases (e.g. PubMed; CINAHL Plus with Full Text through EBSCO and Social Care Online). The grey literature was searched through the following databases: PROSPERO; OpenGrey; EThOS e-theses online service; and ProQuest Dissertations & Theses Global: full search strategy. We complemented these electronic searches by searching the reference list of included full-text reports and articles and by contacting our existing network of 15 experts. Eligibility criteria: We included studies that: 1- focused on WRQoL/work-related wellbeing (and their synonyms) where the concept is defined as a multidimensional construct consisting of several components (at least two); and 2- included adult social care or community health care and individuals working in those contexts as participants groups. Results: In total, we included 61 publications. There is an absence of agreement on a definition of WRQoL. Very few studies provided an explicit definition of WRQoL and of those even fewer linked those definitions to specific theoretical models. Based on a thematic analysis of definitions of WRQoL, measures, and factors associated with WRQoL or general wellbeing we identified six key components: organisational characteristics; job characteristics; mental wellbeing and health; physical wellbeing and health; spillover from work to home; and professional identity. Strategies implemented and evaluated in adult social care that addressed social care staff's WRQoL are almost entirely lacking. Conclusions: While WRQoL in adult social care is recognised as an important concept (given the volume of identified studies), there is very little consensus on what WRQoL is and how best it should be measured. Without a clear understanding of what WRQoL is and how to measure it, development of any interventions and recommendations to the sector and policymakers on how to improve WRQoL among those working in adult social care remains challenging.