Search

Context: Social care outcomes (the effect of services on the quality of life of people with support needs and unpaid carers) have been proposed as a way of improving the quality and effectiveness of care. Outcomes have also been proposed as a way of reconceptualising ‘needs’ that have applications in needs assessment, care planning, evaluation and care practice. Objectives: The study aimed to provide insights into social care professionals’ experiences and views on the collection and application of outcomes data in practice and what they believe are the benefits, challenges and barriers to implementation. Methods: Interviews were conducted with 25 social care professionals in England and analysed using a framework approach. Findings: Participants reported perceived benefits of using outcomes data, especially to focus effort on improving the well-being of people with support needs and carers. Perceived challenges include requirements for data collection set by funders/commissioners, the volume of data collected, difficulties in separating non-service-related influences on outcomes and the format of collection. Participants felt a more flexible approach might facilitate more meaningful conversations, rather than a ‘tick-box’ exercise. Limitations: The study sample was purposive, based on established connections. It only included professionals from London and South East and Central England. Implications: Although outcomes are perceived as important in helping to improve people’s lives, social care professionals identified a number of challenges. Further research to understand and address these challenges is needed.

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.

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.

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.

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.

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.

IntroductionHealth and care data are routinely collected about care home residents in England, yet there is no way to collate these data to inform benchmarking and improvement. The Developing research resources And minimum data set for Care Homes’ Adoption and use study has developed a prototype minimum data set (MDS) for piloting.Methods and analysisA mixed-methods longitudinal pilot study will be conducted in 60 care homes (approximately 960 residents) in 3 regions of England, using resident data from cloud-based digital care home records at two-time points. These will be linked to resident and care home level data held within routine National Health Service and social care data sets. Two rounds of focus groups with care home staff (n=8–10 per region) and additional interviews with external stakeholders (n=3 per region) will explore implementation and the perceived utility of the MDS. Data will be assessed for completeness and timeliness of completion. Descriptive statistics, including percentage floor and ceiling effects, will establish data quality. For validated scales, construct validity will be assessed by hypothesis testing and exploratory factor analysis will establish structural validity. Internal consistency will be established using Cronbach’s alpha. Longitudinal analysis of the pilot data will demonstrate the value of the MDS to each region. Qualitative data will be analysed inductively using thematic analysis to understand the complexities of implementing an MDS in care homes for older people.Ethics and disseminationThe study has received ethical approval from the London Queen’s Square Research Ethics Committee (22/LO/0250). Informed consent is required for participation. Findings will be disseminated to: academics working on data use and integration in social care, care sector organisations, policy makers and commissioners. Findings will be published in peer-reviewed journals. Partner NIHR Applied Research Collaborations, the National Care Forum and the British Geriatrics Society will disseminate policy briefs.

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.

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 There has been considerable interest in using the Adult Social Care Outcomes Toolkit (ASCOT), developed in England, to measure quality-of-life outcomes of long-term care (LTC-QoL) service provision in national and cross-national studies. Objectives The aim of this study was to translate and culturally adapt the original ASCOT service user measure into German and to evaluate its content and construct validity in Austrian home care service users. Methods The translation and cultural adaptation process followed the ISPOR TCA guidelines. We used qualitative data from six cognitive debriefing interviews with Austrian recipients of home care services to assess linguistic and content validity. In addition, cross-sectional survey data (n = 633) were used to evaluate construct validity by testing hypothesized associations established in a previous study for the original English ASCOT service user instrument. Results Cognitive debriefing interviews confirmed that the German adaptation of the ASCOT service user instrument was understood as intended, although two domains (‘Control over daily life’ and ‘Dignity’) and selected phrases of the response options were challenging to translate into German. All ASCOT domains were statistically significantly associated with related constructs and sensitive to service user sub-group differences. Conclusions We found good evidence for a valid cross-cultural adaptation of the German version of ASCOT for service users. The analysis also supports the construct validity of the translated instrument and its use in evaluations of QoL-effects of LTC service provision in German-speaking countries. Further research on the reliability and feasibility in different care settings is encouraged.

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.

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.

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.

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.

© 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.

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.

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.

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.