BackgroundSocial care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments.A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes.MethodsTo evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to ‘think aloud’ while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent’s comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response.ResultsA total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report.ConclusionsA new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties.

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.

BackgroundThe quality of life of people receiving health and social care is an important indicator of service quality, but the relationship between patient experience and outcomes and regulator quality ratings in England is unknown. In 2013, the health and social care regulator in England, the Care Quality Commission (CQC), introduced a new ratings system and by February 2017, all social care services were inspected and awarded new quality ratings (outstanding, good, requires improvement and inadequate). This study aimed to explore whether quality ratings were associated with residents’ quality of life, controlling for confounding variables.MethodsWe conducted a nested, cross-sectional study, collecting social care-related quality of life (SCRQoL) data for 293 older care home residents in 34 care homes (20 nursing and 14 residential) in the South East of England. CQC ratings and other resident and home-level variables were also collected for the analysis. Multilevel modelling explored whether residents’ social care-related quality of life (SCRQoL) was associated with regulator ratings, controlling for confounding variables.ResultsOutstanding and good homes were collapsed into one category and compared with homes requiring improvement. Nationally, only 2 % of care homes for older people are rated as inadequate and it was not possible to capture sufficient numbers for the analysis. We recruited one but it was re-inspected during the fieldwork period and its rating changed to requires improvement. The random intercept multilevel model, which accounted for 16.93% of the differences in SCRQoL within homes and 69.80% between, indicated that better SCRQoL was significantly associated with being female, better functioning, no dementia diagnosis, fewer communication difficulties, and living in a care home rated as outstanding/good by CQC. Size of home and registration category were not significant predictors.ConclusionsThis study found evidence that quality ratings are associated with residents’ SCRQoL. As well as aiming to improve quality and ensure minimum standards, quality ratings have the potential to inform user choice and help the public compare care homes based on quality. Future research to establish the generalisability and replicability of the results is required.

BackgroundAlongside an increased policy and practice emphasis on outcomes in social care, English local authorities are now obliged to review quality at a service level to help in their new role of ensuring the development of diverse and high-quality care markets to meet the needs of all local people, including self-funders. The Adult Social Care Outcomes Toolkit (ASCOT) has been developed to measure the outcomes of social care for individuals in a variety of care settings. Local authorities have expressed an interest in exploring how the toolkit might be used for their own purposes, including quality monitoring. This study aimed to explore how the care homes version of the ASCOT toolkit might be adapted for use as a care home quality indicator and carry out some preliminary testing in two care homes for older adults.MethodsConsultations were carried out with professional and lay stakeholders, with an interest in using the tool or the ratings it would produce. These explored demand and potential uses for the measure and fed into the conceptual development. A draft toolkit and method for collecting the data was developed and the feasibility of using it for quality monitoring was tested with one local authority quality monitoring team in two homes for older adults.ResultsStakeholders expressed an interest in care home quality ratings based on residents’ outcomes but there were tensions around who might collect the data and how it might be shared. Feasibility testing suggested the measure had potential for use in quality monitoring but highlighted the importance of training in observational techniques and interviewing skills. The quality monitoring officers involved in the piloting recommended that relatives’ views be collected in advance of visits, through surveys not interviews.ConclusionsFollowing interest from another local authority, a larger evaluation of the measure for use in routine quality monitoring is planned. As part of this, the ratings made using this measure will be validated against the outcomes of individual residents and compared with the quality ratings of the regulator, the Care Quality Commission.

Purpose Research in care homes requires the co-operation of care home managers. Noting the challenges faced by the care home sector, the purpose of this paper is to consider ways in which research studies can encourage care home managers and their homes to participate in research. Design/methodology/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. Whereas 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 limitations/implications This paper suggests that 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/value This paper shows the advantages and disadvantages of using a combination of strategies for encouraging the participation of care home managers in research.

Background Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. Methods Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. Results Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. Conclusions This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research. Electronic supplementary material The online version of this article (10.1186/s12913-019-4025-1) contains supplementary material, which is available to authorized users.

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Older carers, aged 65 or over, may find it difficult to balance caring while maintaining their own health and quality of life (QoL). For older carers, especially, established approaches to separately identifying, assessing and addressing carers' and care‐recipients' needs, may not fully consider the interwoven nature of caregiving relationships and the ways in which community‐based social care services may impact the QoL of both parties. The purpose of this scoping review is to identify and synthesise what is already known about the QoL of older carers and care‐recipients, considered together, which we refer to as ‘dyadic QoL’; both in general, and with regard to the impact of community‐based social care. We searched 16 electronic databases and grey literature in October and November 2020. A total 822 items were identified and reviewed based on the inclusion criteria: focusing on older carers and care‐recipients from a dyadic perspective and their QoL or well‐being, published since 2000 and in English. Fourteen papers were thematically analysed, and the findings were presented under two themes. First, the value of applying an overarching conceptual framework of ‘interdependence theory’ in understanding dyadic QoL, including two broad approaches: dyadic data analysis and the dynamics of caring relationships. Second, a number of papers highlighted the role of support from family, friends and neighbours and community‐based social care services in promoting QoL outcomes of caring dyads. This review emphasised that considering the QoL of carers and care‐recipients, together, would potentially improve the understanding of care needs, provision of care services and QoL outcomes. However, there is limited and fragmentary evidence about dyadic QoL or the impact of social care services on dyadic QoL outcomes. Future work is required to explore and evaluate the use of a dyadic approach in social care practice and research.