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Purpose This paper aims to explore the content of Safeguarding Adult Reviews (SARs) from older adult care homes to understand how safety is understood and might be measured in practice. Design/methodology/approach SARs relevant to older adult care homes from 2015 onwards were identified via the Social Care Institute of Excellence SARs library. Using thematic analysis, initial inductive coding was mapped to a health-derived safety framework, the Safety Measurement and Monitoring Framework (SMMF). Findings The content of the SARs reflected the dimensions of the SMMF but gaining a deeper understanding of safety in older adult care homes requires additional understanding of how this unique context interacts with these dimensions to create and prevent risks and harms. This review identified the importance of external factors in care home safety. Originality/value This study provides an insight into the scope of safety issues within care homes using the SARs content, and in doing so improves understanding of how it might be measured. The measurement of safety in care homes needs to acknowledge that there are factors external to care homes that a home may have little knowledge of and no ability to control.

Older carers, aged 65 or over, may find it difficult to balance caring whilst 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 wellbeing, 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.

There are an estimated 2 million older carers, aged 65 or over, in the UK. Older carers are more likely to care for a co-resident spouse/partner, provide high-intensity support, and have their own health problems. The literature suggests that a ‘dyadic outcomes approach’ to social care (i.e. services and support that seek to understand and improve the quality of life of the older carer and the person they support, individually and together) may be especially beneficial for older carers. Such an approach may be applied in needs assessment and review, service evaluation, planning and delivery, or commissioning. However, there is a paucity of evidence of its effectiveness and feasibility in practice. In this qualitative study, we explored views of social care professionals in England on supporting older carers, as well as the feasibility, potential benefits and challenges of applying a dyadic outcomes approach into policy and practice. Overall, 25 professionals were interviewed between January and July 2021, including social workers, team leads, managers, commissioners and other representatives from local authorities, care providers and carer organisations. Findings indicate that there is limited focus on the specific needs of older carers in practice. Participants recognised the potential benefits of a dyadic approach, including the development of a holistic view that enables an effective response to supporting quality of life, for both carer and care-recipient, and building trust when working to support the caring dyad. Barriers to applying a dyadic approach included data protection and sharing, both within and between organisations; required workforce skills, experience and knowledge; and insufficient and competition-oriented adult social care funding that discourages collaborations between agencies. Despite the potential of the approach to improve the effectiveness of support for older caring dyads, these challenges need to be recognised and addressed if it is to be implemented.

A number of theological perspectives on adult social care are considered to illustrate how theology can be brought into creative dialogue with the practical and ethical issues in a way that may inform the ongoing public debate.

The Adult Social Care Outcomes Toolkit four response‐level interview schedule (ASCOT INT4) for service users was translated into Finnish. The aim of this paper was to investigate the construct validity and structural characteristics of the Finnish ASCOT. We used data from a face‐to‐face interview survey of older people receiving publicly funded home care services, which was conducted in 2016–2017 (n = 493), excluding missing values and proxy respondents (n = 334). Chi‐square tests, adjusted residuals and analyses of variance were used to examine hypothesised associations between each attribute and a number of relevant variables regarding health and well‐being, disabilities, living arrangements, social contact and support, experience of service use, and the nature of the locality and environment. Structural characteristics were explored using exploratory factor analysis and Cronbach's alpha test. The EQ‐5D‐3L and ASCOT were moderately correlated (r = 0.429; p < 0.001). The ASCOT attributes were statistically positively related to the overall quality of life. For other tested variables, we found a high number of significant associations with the control over daily life, occupation, social participation, and personal cleanliness attributes, but fewer significant associations with the other attributes. Cronbach's alpha was 0.697 and a single factor was extracted. This assessment provides evidence to support the construct validity of the Finnish ASCOT. The results support the introduction of the Finnish ASCOT into Finland for use in practical applications. Future research on its reliability would be useful.

Unpaid care is an important part of long-term care systems. It is increasingly recognised that carers have their own health and well-being needs. Carer-specific interventions, as well as support for the care-recipient, may enable carers to maintain their own health and well-being alongside caring. This study seeks to establish whether and how community-based care services affect carers’ quality of life. The Adult Social Care Outcomes Toolkit for Carers was used to capture carers’ social care-related quality of life through qualitative interviews and a survey of carers in England in order to provide insights into the impact of community-based care services on carers’ quality of life outcomes.

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 on which 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 of the MDS. Implementation decisions will determine the success of the MDS, affecting aspects including data quality, completeness, and usability. 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.

Objectives\ud \ud Existing measures for estimating quality-adjusted life-years are mostly limited to health-related quality of life. This article presents an overview of the development the EQ-HWB (EQ Health and Wellbeing), which is a measure that encompasses health and wellbeing.\ud \ud \ud \ud Methods\ud \ud Stages: (1) Establishing domains through reviews of the qualitative literature informed by a conceptual framework. (2) Generation and selection of items to cover the domains. (3) Face validation of these items through qualitative interviews with 168 patients, social care users, general population, and carers across 6 countries (Argentina, Australia, China, Germany, United Kingdom, United States). (4) Extensive psychometric testing of candidate items (using classical, factor analysis, and item response theory methods) on > 4000 respondents in the 6 countries. Stakeholders were consulted throughout.\ud \ud \ud \ud Results\ud \ud A total of 32 subdomains grouped into 7 high-level domains were identified from the qualitative literature and 97 items generated to cover them. Face validation eliminated 36 items, modified 14, and added 3. Psychometric testing of 64 items found little difference in missing data or problems with response distribution, the conceptual model was confirmed except in China, and most items performed well in the item response theory in all countries. Evidence was presented to stakeholders in 2 rounds of consultation to inform the final selection of items for the EQ-HWB (25-item) and the short version of EQ-HWB (9-items).\ud \ud \ud \ud Conclusions\ud \ud EQ-HWB measures have been developed internationally for evaluating interventions in health, public health, and social care including the impact on patients, social care users, and carers.

Improving the quality of life of carers is the ultimate goal of carers’ policy and support services. This paper discusses issues and challenges in conceptualising and comparing carers’\ud quality of life in England and Japan, based on developing a Japanese-version of the self-completion Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Since supporting\ud carers in employment is a key concern in both countries, we particularly focus on this group of carers.

Due to the absence of standardized Quality of Life (QoL) measures for informal family caregivers of recipients of long-term care (LTC) in Japan, translation and cross-cultural adapted LTC outcome measures are needed for research and evaluation. In this study, we assessed the validity and reliability of the factor structure and response system of the translated and cross-culturally adapted Japanese version of the Adult Social Care Outcomes Toolkit for Carer (J-ASCOT-Carer). Participants were 872 informal family caregivers of adults who lived at home and required LTC services. Almost half (46%) of the participants were between 50 and 59 years old, 85% were employed, and 69% resided with their care recipients. We used the combined factor analysis and item response theory approach. Model fit indices included factor loading, path coefficients, root mean square error of approximation, standardized root mean square residual, and comparative fit index. This study confirmed the one factor structure that was identified in the original English version of the ASCOT-Carer. The values for the model fit indices indicated a good fit. Moreover, the validity and reliability of the response system were confirmed. Therefore, the J-ASCOT-Carer is a reliable assessment instrument to measure QoL of Japanese caregivers of adults requiring LTC.

Economic evaluation combines costs and benefits to support decision-making when assessing new interventions using preference-based measures to measure and value benefits in health or health-related quality of life. These health-focused instruments have limited ability to capture wider impacts on informal carers or outcomes in other sectors such as social care. Sector-specific instruments can be used but this is problematic when the impact of an intervention straddles different sectors.An alternative approach is to develop a generic preference-based measure that is sufficiently broad to capture important cross-sector outcomes. We consider the options for the selection of domains for a cross-sector generic measure including how to identify domains, who should provide information on the domains and how this should be framed. Beyond domain identification, considerations of criteria and stakeholder needs are also identified.This paper sets out the case for an approach that relies on the voice of patients, social care users and informal carers as the main source of domains and describes how the approach was operationalised in the ‘Extending the QALY’ project which developed the new measure, the EQ-HWB (EQ health and wellbeing instrument). We conclude by discussing the strengths and limitations of this approach. The new measure should be sufficiently generic to be used to consistently evaluate health and social care interventions, yet also sensitive enough to pick up important changes in quality of life in patients, social care users and carers.

BackgroundSafety is a key concern in older adult care homes. However, it is a less developed concept in older adult care homes than in healthcare settings. As part of study of the collection and application of safety data in the care home sector in England, a scoping review of the international literature was conducted.ObjectivesThe aim of the review was to identify measures that could be used as indicators of safety for quality monitoring and improvement in older adult residential or nursing care homes.Sources of evidenceSystematic searches for journal articles published in English language from 1 January 1970, without restriction to the study location or country, were conducted in Web of Science, Scopus and PubMed on 28 July 2019.Eligibility criteriaInclusion criteria were: peer-reviewed journal articles; qualitative or quantitative studies of older adult nursing and/or residential care homes; and related to any aspect of safety in care homes, including the safety of healthcare provision in the care home. A total of 45 articles were included after review of the title/abstract or full text against the inclusion criteria.Charting methodsKey information was extracted and charted. These findings were then mapped to the Safety Measurement and Monitoring Framework in healthcare (SMMF), adapted by the research team to reflect the care home context, to determine the coverage of different aspects of safety, as well as potential gaps.Results and conclusionsSystematic searches for journal articles published in English language from 1 January 1970, without restriction to the study location or country, were conducted in Web of Science, Scopus and PubMed on 28 July 2019. Inclusion criteria were: peer-reviewed journal articles; qualitative or quantitative studies of older adult nursing and/or residential care homes; and related to any aspect of safety in care homes, including the safety of healthcare provision in the care home.A total of 45 articles were included after review of the title/abstract or full text against the inclusion criteria. Key information was extracted and charted. These findings were then mapped to the Safety Measurement and Monitoring Framework in healthcare (SMMF), adapted by the research team to reflect the care home context, to determine the coverage of different aspects of safety, as well as potential gaps.The findings indicate that there are a range of available safety measures used for quality monitoring and improvement in older adult care homes. These cover all five domains of safety in the SMMF. However, there are potential gaps. These include user experience, psychological harm related to the care home environment, abusive or neglectful care practice and the processes for integrated learning. Some of these gaps may relate to challenges and feasibility of measurement in the care home context.

It has been argued that a relational perspective is vital for an understanding of care and caring. This is difficult to contest, since care and caring exist in and through relationships. Yet the direction of public policy in the UK, and elsewhere, has been to emphasise outcomes-based policy-making. This approach draws upon evidence of the effectiveness of policy, service delivery and/or practice-based interventions drawn from evaluation of their impact on outcomes for individuals. This paper critically explores the potential contribution, as well as the limitations, of an outcomes-based perspective.

Purpose The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), developed in England, measures the effects of long-term care (LTC) services and carer support on informal carers’ quality of life (QoL). Translations of the ASCOT-Carer into other languages are useful for national and cross-national studies. The aim of this paper was to report on the translation and cultural adaptation of the original English ASCOT-Carer into German, to assess its content validity and to test for its construct validity (convergent and discriminative/known-group validity). Methods Translation and cultural adaptation followed the ISPOR TCA guidelines. As part of the translation and adaptation process, five cognitive debriefing interviews with informal carers were used for evaluating linguistic and content validity. In addition, a sample of 344 informal carers of older adults, who received home care services in Austria, was used for hypothesis testing as suggested by the COSMIN checklist to assess convergent and discriminative/known-group validity as part of construct validity. Results Cognitive interviews provided evidence that questions and response options of the German ASCOT-Carer were understood as intended. Associations between ASCOT-Carer scores/domains and related outcome measures (convergent validity) and expected groups of informal carers and the care service users they care for (discriminative validity) supported construct validity of the translated instrument. Conclusion The German ASCOT-Carer instrument meets the required standards for content and construct validity which supports its usefulness for (cross-)national studies on LTC-service-related QoL-outcomes in informal carers. Research is encouraged to assess further measurement properties of the translated instrument.

Background. To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Methods. Data were derived from an online survey undertaken with carers residing in Australia. An exploratory factor analysis was conducted to ascertain the underlying latent constructs of the 3 measures. Results. Data from 351 informal carers yielded a 5-factor model describing general quality of life outside caring, problems due to caring, fulfilment from caring, social support with caring, and relationship with the care recipient. Most of the ASCOT-Carer and the CarerQol items loaded onto the first and second factors, respectively. The greatest overlap was observed between CarerQol and CES items loading onto the other 3 shared common factors. Limitations. Online data collection resulted in inconsistent responses, which had to be removed to yield logical data. A convenience sampling approach may have compromised the generalizability of study findings. Conclusion. Although some overlap was observed, the 3 carer-related preference-based measures seem to tap into different constructs of carer-related quality of life and caring experiences and cannot be used interchangeably.

Objectives To compare the psychometric properties of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer), the Carer Experience Scale (CES), and the Care-related Quality of Life (CarerQol) to inform the choice of instrument in future studies. Methods Data were derived from a 2018 online survey of informal carers in Australia. Reliability was assessed via internal consistency (Cronbach alpha, α) and test-retest reliability (intraclass correlation coefficient, ICC) for respondents who self-reported no change in their quality of life as a carer over 2 weeks. Convergent validity was evaluated via predetermined hypotheses about associations (Spearman’s rank correlation) with existing, validated measures. Discriminative validity was assessed based on the ability of the carer-related scores to distinguish between different informal care situations (Mann–Whitney U, Kruskal–Wallis one-way analysis of variance). Results Data from 500 carers were analyzed. The ASCOT-Carer demonstrated a higher degree of internal consistency, possibly due to a unidimensional structure, and test-retest reliability than the CarerQol and CES (α = 0.87, 0.65, 0.59; ICC, 0.87, 0.67, 0.81, respectively). All 3 instruments exhibited convergent validity and detected statistically significant associations between carer-related scores and different informal care situations, except for the CarerQol-7D and sole carer status. Conclusions The ASCOT-Carer, CarerQol, and CES performed reasonably well psychometrically; the ASCOT-Carer exhibited the best psychometric properties overall in this sample of Australian informal carers. Findings should be used in conjunction with consideration of research goals, carer population, targeted carer-related constructs, and prevailing perspectives on the economic evaluation to inform choice of instrument in future studies.

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 (ASCOT-Carer). 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.

In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers’ choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care-recipients and their carers. While it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care-related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer-reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care-recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on caregiving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers’ choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care-recipients and also their carers. \ud \ud What is known about the topic\ud • Social care policy in England seeks to promote choice for service users and carers\ud • Carer choice in terms of whether to provide care is often unacknowledged \ud • Reasons for providing care are related to subjective burden and psychological health.\ud \ud What the paper adds\ud • Caring because of social services’ or care-recipients’ expectations was related to lower care-related quality of life, which is a key outcome of adult social care \ud • Providing care because it is expected of the carer was related to greater carer strain\ud • Increased awareness of the relationship between carers’ reasons for caring and outcomes may usefully inform policy and practice that seeks to improve carers’ quality of life.

Long‐term care services are provided to help people manage the consequences of impairment, but their impact goes beyond the meeting of basic needs. Accordingly, the main aim was to explore the marginal effectiveness of care when measured in terms of people's overall care‐related quality of life (CRQoL) and assess changes in marginal effect for increasing intensity. The associated aim was to refine and apply an observational method to estimate marginal effectiveness. A “production function” approach was used with survey data, including Adult Social Care Outcomes Toolkit‐measured CRQoL, whereby we statistically modelled the expected relationship between service utilisation rates and CRQoL. This method seeks to limit endogeneity issues by controlling on observables and using instrumental variable. Using a survey of publicly funded long‐term care service users in England, we found that community‐based long‐term care significantly improved people's CRQoL but with diminishing marginal effects and effects differentiated by baseline impairment levels. There are implications for how the care system should respond to changes in global public budgets. For example, where there is unmet need, a system aimed to maximise (unadjusted) CRQoL would put more emphasis on access (more recipients) than intensity of support compared to a system operating on a needs basis.

Purpose: Unpaid care is an important source of support of people with long-term conditions. Interdependence of carers’ and care recipients’ quality of life would be expected due to the relational nature of caregiving. This study aims to explore interdependence of quality of life in carer/care-recipient dyads, especially in relation to mutual interdependence due to social feedback in the caregiving relationship and also the partner effects of one partner’s experience of long-term care support on the other’s outcomes.\ud Methods: Using data collected in an interview survey of 264 adults with care support needs and their unpaid carers in England, we employed regression analysis to explore whether there is mutual interdependence of care-related quality of life within carer/care-recipient dyads for three quality of life attributes: Control over daily life, Social participation and Occupation. The influence of factors, including satisfaction with long-term care, were also considered on individuals’ and dyad partners’ care-related quality of life.\ud Results: We found mutual interdependence of quality of life at the dyad-level for Control over daily life, but not Occupation or Social participation. A partner effect of care recipients’ satisfaction with long-term care on carers’ Control over daily life was also observed. Higher care recipient satisfaction Page 2 of 28 with care services was associated with higher Control over daily life. By contrast, for Social participation and Occupation, there were only significant effects of care recipients’ satisfaction with long-term care and their own quality of life.\ud Conclusions: These findings highlight the importance of considering the wider impact beyond the individual of long-term care on quality of life in the evaluation of long-term care policy and practice.

© 2020 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd Direct payments can help people with learning disabilities or autism to have good support. Often, family carers manage the direct payments for people who would find this very difficult. We asked family carers who managed direct payments to tell us why they decided to do this and what their experiences were. Family carers told us they found managing direct payments difficult and stressful at first, but this got easier over time. They also said that direct payments helped their family members to have more person-centred support. Abstract: Background There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well-being. Methods This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi-structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. Results Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as “complex needs.” The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a “professional.” The fifth and final theme, mixed emotions, describes the impact on the subjective well-being of carers. Conclusions Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self-directed support and greater well-being, and are sustainable arrangements.

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.

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.

Background This study reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. Methods The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. Results Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. Conclusions The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however, its limitations must be recognized.

Background The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life ‘beyond health’ for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life. Methods An interview survey was conducted with 387 carers of adults who used long-term care (also known as social care) support in England. Construct validity by hypothesis testing was assessed using Pearson correlation coefficient. Exploratory factor analysis was also applied to investigate the dimensionality of the combined items from the ASCOT-Carer and CES (as measures of carer quality of life ‘beyond health’) and the EQ-5D (as a measure of health-related quality of life). Results In the construct validity analysis, hypothesised differences in correlations were observed with two exceptions. The exploratory factor analysis indicated that the ASCOT-Carer, CES and EQ-5D-3 L items loaded onto three separate factors. The first factor comprised the seven ASCOT-Carer items plus two CES items (activities outside caring, support from friends and family). The second factor comprised three of the six CES items (fulfilment from caring, control over caring and getting on with the person you care for). The third factor included four of the five EQ-5D-3 L items. Conclusion The findings indicate that the ASCOT-Carer, CES and EQ-5D-3 L capture separate constructs of social care-related quality of life (ASCOT-Carer) and carer experience (CES), which partially overlap in relation to activities outside caring and social support, and health-related quality of life (EQ-5D-3 L). The ASCOT-Carer and CES are both promising measures for the evaluation of social care support for carers that capture aspects of quality of life ‘beyond health’. The choice of whether to use the ASCOT-Carer or CES depends on the study objectives.

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care‐related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non‐care‐related factors to identify relationships that could inform social care policy and practice. Cross‐sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self‐rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT‐QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support.

Neuropsychiatric symptoms are well recognized in systemic lupus erythematosus (SLE), with depression and anxiety often reported. The authors’ clinical observations suggested emotional lability might also be a noteworthy symptom. In a consecutive series of systemic lupus erythematosus clinic attendees, the authors, therefore, measured depression, anxiety, and emotional lability. Additionally, based on reports linking emotional reactivity and transient mood changes to alterations in early attentional processes, the authors investigated event-related potential indices of preattentive and early orienting responses to auditory stimuli (N1, MMN, P3a and P3b). The authors observed that 15 of 32 participants with systemic lupus erythematosus had high lability scores and, comparing event-related potential measures between the high and low lability subgroups, noted that those with greater emotional lability demonstrated reduced response latencies in N1 and MMN paradigms.

BACKGROUND: The Adult Social Care Outcomes Toolkit was developed to measure outcomes of social care in England. In this study, we translated the four level self-completion version (SCT-4) of the ASCOT for use in the Netherlands and performed a cross-cultural validation.METHODS: The ASCOT SCT-4 was translated into Dutch following international guidelines, including two forward and back translations. The resulting version was pilot tested among frail older adults using think-aloud interviews. Furthermore, using a subsample of the Dutch ACT-study, we investigated test-retest reliability and construct validity and compared response distributions with data from a comparable English study.RESULTS: The pilot tests showed that translated items were in general understood as intended, that most items were reliable, and that the response distributions of the Dutch translation and associations with other measures were comparable to the original English version. Based on the results of the pilot tests, some small modifications and a revision of the Dignity items were proposed for the final translation, which were approved by the ASCOT development team. The complete original English version and the final Dutch translation can be obtained after registration on the ASCOT website ( http://www.pssru.ac.uk/ascot ).CONCLUSIONS: This study provides preliminary evidence that the Dutch translation of the ASCOT is valid, reliable and comparable to the original English version. We recommend further research to confirm the validity of the modified Dutch ASCOT translation.

Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.

Background The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England. Methods Unpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses. Results The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (