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: 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.

Context:The work presented in this paper was undertaken during the first three months of the COVID-19 crisis in the UK. Objectives:The project aimed to respond to questions and concerns raised by front-line care staff during this time, by producing research-based 'Top Tips' to complement emerging COVID-19 policy and practice guidelines. Methods: Eight rapid, expert reviews of published, multidisciplinary research evidence were conducted to help answer care home workers' questions about 'how' to support residents, family members and each other at a time of unprecedented pressure and grief and adhere to guidance on self-distancing and isolation. A review of the emerging policy guidelines published up to the end of April 2020 was also undertaken. Findings: The rapid reviews revealed gaps in research evidence, with research having a lot to say about what care homes should do and far less about how they should do it. The policy review highlighted the expectations and demands placed on managers and direct care workers as the pandemic spread across the UK. Implications: This paper highlights the value of working with the sector to co-design and co-produce research and pathways to knowledge with those who live, work and care in care homes. To have a real impact on care practice, research in care homes needs to go beyond telling homes 'what' to do by working with them to find out 'how'.

Background: The ASCOT-ER is an adapted easy-read version of the ASCOT-SCT4, a selfreport measure of social care-related quality of life (SCRQoL) for social care evaluation. In this study, we investigated the instrument's feasibility, construct validity and factor structure. Method: Data were collected from 264 service users in England. Feasibility was evaluated by missing data and help to complete the questionnaire. Scale dimensionality was assessed using exploratory factor analysis. Construct validity was evaluated by hypothesis testing. Results: Convergent validity was supported by moderate to strong correlations between ASCOT-ER and personal wellbeing and overall quality of life, as well as with individual characteristics. Exploratory factor analysis indicated that the ASCOT-ER is a unidimensional scale. Low missingness indicates that the instrument is feasible; however, most respondents needed some level of support to complete the questionnaire. Conclusion: The study provides preliminary evidence of the ASCOT-ER's feasibility, unidimensionality and construct validity.

Context: Poorer mortality rates and quality of care in hospitals outside of office hours is well documented. The literature on adult social (long-term) care, and in particular, care homes, is much less developed. There are, however, a few studies that suggest that outside of Monday to Friday between 9.00am and 16.30pm, quality of care in care homes might be lower. Objective(s): The objective of this study was to compare the social care-related quality of life (SCRQoL) of residents in older adult care homes during office hours (0900 to 16.30) with outside of office hours (evenings and weekends). Method(s): We conducted a nested, cross-sectional study, collecting SCRQoL data using the Adult Social Care Outcomes Toolkit at two time points, office hours (Monday-Friday between 9.00 and 16.30) and outside of office hours. We did not examine nigh times in the homes. Data were collected for 99 older adult care home residents in 13 care homes (5 residential and 8 nursing) and analysed using a combination of non-parametric and parametric techniques. Findings: SCRQoL ratings were lower during the weekends and early evenings than during office hours. The differences were most pronounced in the higher order domains of social participation, occupation and control over daily life. Limitations: The study struggled to explain this variation. This work was both exploratory and small in size. We also did not collect data on levels of staffing. Implications: Further work is required to both confirm our findings and explore the reasons for the difference. Nonetheless, this study challenges the traditional model of care, in which social activities and meaningful pastimes are mostly organised during 'office hours'. We observed evenings that were very short, as residents tended to return to their room shortly after dinner, and quiet weekends and this was reflected in residents' quality of life. This is contrary to the rhetoric of care homes being people's own homes, where they would be able to choose to remain active and engaged into the evening and on the weekends, as they may have done throughout their lives.

Purpose: Research in care homes requires the co-operation of care home managers. Noting the challenges faced by the care home sector, this article considers ways in which research studies can encourage care home managers and their homes to participate in research. Approach: The discussion is informed by two research projects which are used to explore methods of encouraging managers of care homes to participate in research. One of the studies included interviews with care home managers to understand their reasons for taking part in research. Findings: This paper outlines and assesses three strategies for encouraging care home managers to participate in research; working in partnership, providing payment and providing personalised feedback on findings. While all the strategies have the potential to encourage care home managers' participation in research, partnership working in particular was found to be fraught with difficulties. Research implications: This paper suggests the research projects could employ any of these strategies to encourage managers of care homes to participate in research. It also suggests that proactive measures could help ameliorate the pitfalls of partnership working. Originality: This paper shows the advantages and disadvantages to using a combination of strategies for encouraging the participation of care home managers in research.The authors would like to thank all the residents, family members, staff and homes who took part in this research and the local authorities who supported it.

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.

Debate