Stacey Rand

Context: Ensuring the safety of older adults living in residential care homes is an international priority. Residents are often highly frail and vulnerable, making safety a critical concern. A growing range of organisations collect safety-related data from care homes, yet there is limited understanding of how effectively these data support learning and improvement.Objective(s): To explore strategic stakeholders’ views on the scope, collection, and use of safety data in older adult care homes, and to identify opportunities to better support learning and improvement.Method(s): Semi-structured online interviews were conducted with 18 purposively sampled strategic-level professionals in England, representing regulatory bodies, NHS organisations, local authorities, care home providers, and representative organisations. Data were analysed thematically.Findings: Data collection largely reflected organisational roles in regulation or quality monitoring and focused predominantly on adverse outcomes and incidents. Care homes were subject to overlapping data requests. Barriers to effective use of safety data included siloed data collection, limited sharing between organisations and care homes, a blame-oriented culture associated with harm-focused measures, and limited capacity to analyse and use data for improvement.Limitations: This was a small, qualitative study focused on strategic stakeholders; perspectives of care home staff, residents, and families were not included.Implications: Improving safety assessment in care homes requires rationalising and standardising data requests, balancing harm-focused indicators with measures of proactive safety practices, enhancing data sharing, strengthening analytic capacity, and ensuring care home staff have the skills required to use safety intelligence to stimulate safety improvement.

Research aim This study aimed to test two questionnaires designed to measure the quality of life for people living with dementia and those who care for them. We wanted to find out if these tools (called ASCOT-Proxy and ASCOT-Carer) were easy to use and if they accurately measured how social care services—like homecare or day centres—affect people’s lives. We also looked at how the COVID-19 pandemic and personal circumstances, such as finances, impacted well-being. Background More people with dementia are living at home, supported by family members or friends (also known as ‘carers’). Adult social care services can play an important role in maintaining their independence and well-being. However, to improve these services, we need reliable ways to measure whether and how they actually make a difference. Measuring the quality of life for people with advanced dementia can be difficult, especially if they cannot answer questions themselves even with support. This is why we tested the ASCOT-Proxy tool that allows carers to provide information on their behalf. We also wanted to understand the suitability and reliability of the ASCOT-Carer completed by carers of people with dementia about their own lives and the impact of services to support them. What we did We conducted a survey of 313 carers across England, either online or by post. To take part, carers had to be supporting someone with dementia who lived at home and was unable to fill out a questionnaire themselves even with support. We also ensured that the person with dementia or the carer was using at least one social care service. Participants were found through the NHS and online volunteer groups. Because the study took place during the COVID-19 pandemic, we were also able to consider the effect of lockdown restrictions on people’s lives. What we found The survey showed that both questionnaires are valid and reliable tools. Nearly 90% of carers completed all the questions, proving they are easy to use. Through statistical checks, we confirmed that the questions accurately measured the areas of life they were designed to assess. Specifically, we found that asking a carer to answer from the perspective of the person they care for was the most valid and reliable method. The findings regarding quality of life were concerning. More than half of the carers reported a poor quality of life in five out of seven key areas, often to a level that could potentially or already negatively affect their health. Carers who struggled financially or were unhappy with their care services had the lowest levels of well-being. Interestingly, while COVID-19 restrictions did not significantly change the carers' reported quality of life, the restrictions did have a clear negative impact on the people living with dementia. Conclusion The ASCOT-Proxy and ASCOT-Carer questionnaires are reliable tools that can be used in future research and by local authorities or care providers to see if social care services are working. The study highlights the immense pressure on carers in England. It shows that carers’ quality of life is closely linked to financial security and their satisfaction with care services. Next steps and future plans ASCOT-Proxy and ASCOT-Carer questionnaires can be used in future research to understand the effect of adult social services on people’s lives. The questionnaires are available here . By using these tools regularly, the social care system can better understand which services provide the most benefit, for whom. Future work should focus on how to better support carers who are facing financial hardship or their own health issues, as these are the people most at risk of reaching a breaking point. PPIE (Patient and Public Involvement and Engagement) The study involved two people with experience of caring for a loved-one with dementia. They worked with us throughout the project. They helped us to design the study, to find people to take part in the survey, to reflect on our findings and to share what we found in articles, blogs and presentations.

Background: In the UK, over half a million older people rely on publicly funded social care services to support their daily living needs. It is crucial to measure the quality of these services to ensure they meet the needs of those they support. The Adult Social Care Outcomes Toolkit (ASCOT) was developed to assess social care‐related quality of life (SCRQoL; Netten et al., 2012). However, many older individuals, particularly those living with dementia, face difficulties completing standard questionnaires (Aznar et al., 2021). Aim: This project aimed to enhance the accessibility of the ASCOT toolkit for older people, enabling more people to self‐report their experiences of social care. Methods: We employed a co‐design methodology, bringing together a working group of older adults, primarily those living with dementia, along with their carers/supporters, to adapt the ASCOT toolkit. The adaptation process involved six working group meetings. In between these meetings, three rounds of cognitive testing (Meadows, 2021) with 25 participants who had difficulties completing traditional questionnaires also took place, with findings brought back to the working group after each round, so they could further refine the toolkit in light of cognitive testing results. Results: The final adapted version of the ASCOT toolkit differs significantly from the original. The cognitive testing results demonstrate a considerable reduction in challenges experienced by participants between testing rounds, indicating a more accessible and user‐friendly tool. Implications: The findings from this project demonstrate that co‐designing outcome measures with older people, particularly those living with dementia, is both feasible and impactful. This work offers a replicable model for creating inclusive, accessible tools that amplify the voices of service users. Patient and Public Involvement: 8 older people, including those living with dementia, have co‐designed the new version of the tool over 6 meetings. Further meetings took place to jointly design dissemination materials. Working group members have co‐presented project findings at conferences and events, and two members have co‐authored this article. PPI were involved from the funding acquisition stage of this project. Two PPI members who were not part of the working group were part of the project steering group.

Introduction Care provided in people’s own homes (domiciliary care) is an increasingly important part of long-term care. There are various services, including home visits, live-in care and housing with care. Some people directly employ care staff, called personal assistants. Services vary in quality, price and availability, and there is currently little evidence of the value these services provide to the public purse and individuals. This study protocol presents planned research to fill this important gap. Methods and analysis This will be a cross-sectional study based on surveys of care recipients, their unpaid carers as well as formal care providers. In the first half of 2026, we will survey 1850 people accessing domiciliary care either through a homecare agency, a housing with care scheme or by directly employing personal assistants and 400 unpaid carers, all based in England. We will conduct a cost-effectiveness analysis taking a ‘production function’ approach and use quality of life as measured by the Adult Social Care Outcomes Toolkit as the main outcome of interest. Ethics and dissemination The study received ethical approval from the School of Social Sciences Staff Review Committee at the University of Kent on 20 May 2025 (reference 1195) and the Health Research Authority, London—Camberwell St Giles Research Ethics Committee on 28 October 2025 (reference 25/LO/0652). Implications around consent, data protection and confidentiality, risk and participant payment are discussed. In addition to academic outputs (eg, academic articles, conference presentations), we aim to coproduce news items and blogs with people with lived experience of accessing long-term care and jointly present findings at events aimed at the care sector. Moreover, we will offer participating care providers benchmarking briefs based on our findings.

Rasch analysis was applied to establish the structural validity of the ASCOT-Workforce measure of care-work related quality of life (CWRQoL). The analysis was also used to guide potential item reduction to create a short-form version, which could be used in future studies to develop preference weights for use in economic evaluation of interventions and policy. Rasch analysis was applied to the ASCOT-Workforce (13 items) from a survey of the adult social care workforce in England ( n = 7233). The assumption of a single scale was based on the finding of a single factor structure for the 13-item measure from a prior study that applied exploratory factor analysis. Rasch analysis of ASCOT-Workforce (13 items) had acceptable model fit, internal consistency and met assumptions of unidimensionality and local independence. There was suboptimal distinguishability at some thresholds between response options and evidence of differential item functioning (DIF). Most issues were addressed by omitting items to create a 9-item version, although there were still issues with three items. These were retained based on policy relevance and face validity to key stakeholders. ASCOT-Workforce (13-item, 9-item) are both valid instruments of CWRQoL for those working in the adult social care workforce. The short-form (9-items) performs slightly better than the 13-item measure, although suboptimal distinguishability at category thresholds and DIF persisted for three items. Further qualitative study to explore the reasons underlying DIF, and whether re-drafting the response options could improve the response category distinguishability, are recommended.

Purpose: ASCOT easy read for older people (ASCOT-ER OP) is an adaptation of the Adult Social Care Outcomes Toolkit (ASCOT-SCT4) that was co-produced with older adults and their families to improve accessibility and feasibility of completion. This study aimed to examine the structural validity of ASCOT-ER OP using exploratory factor analysis (EFA) and Rasch analysis. Methods: Data were collected by British Red Cross (BRC) as part of short-term support for adults living at home, post-crisis or hospital discharge (‘Support at Home’). ASCOT-ER OP was collected at initial assessment (baseline) and at the end of support (follow-up), typically no longer than 12 weeks later. Only follow-up data were analysed in this study. EFA was conducted to assess structural validity against the single factor structure of ASCOT-SCT4. Overall fit to the Rasch model was examined alongside assessment of unidimensionality, local independence, item fit, response threshold ordering and differential item functioning (DIF) by age group (18–64 and 65 + years). Results: ASCOT-ER OP had a single factor structure in EFA. There was good fit to the Rasch model without significant breach of assumptions. Item fit was satisfactory. There was no evidence of disordered thresholds, but suboptimal distinguishability between response categories at some thresholds. These aligned to instances of < 10 ratings per category and/or were consistent with the properties of the ASCOT-SCT4. There was evidence of DIF by age group for two items: Personal Safety and Home comfort and cleanliness . Conclusions: EFA and Rasch support the structural validity of ASCOT-ER OP as a unidimensional measure.

Background: In England, care homes are the primary providers of long-term care for older adults. The increasing recognition of the importance of social care underscores the importance of collaboration between the National Health Service and care homes. The lack of data sharing among stakeholders limits opportunities for co-ordinated care, service development and research. Objectives: Identify how to support research, service development and innovation in care homes. Combine existing evidence with care home-generated resident data to create a minimum data set that is relevant and usable for stakeholders, including residents, relatives, practitioners, researchers, regulators and commissioners. Design and methods: The study used a mixed-methods approach, structured into five work packages, supported by patient and public involvement and engagement with residents, carers and staff: Work package 1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes. Work package 2: Created a trial archive for secondary data analysis. Work package 3: Conducted a scoping review, a realist review and a national survey to define minimum data set content and assess implementation challenges in English care homes. Work package 4: Linked residents’ data from National Health Service and social care data sets with data from study care homes, deriving useful minimum data set variables and assessing data quality. Work package 5: Piloted the minimum data set at two points in care homes within three integrated care systems, conducted focus groups and interviews with care home and integrated care system staff. Three national consultations explored how stakeholders use resident information, measure quality of life and minimum data set usefulness. Additionally, subprojects examined data availability in domiciliary settings, staff reasoning when assessing resident well-being and completing research during rapid policy changes. Findings: The reviews revealed significant heterogeneity in outcome measurement and questioned the appropriateness of some methods and measures used for care home research. The Virtual International Care Home Trials Archive merged data from 6 United Kingdom randomised controlled trials with 5674 residents across 308 care homes. International minimum data set studies are a valuable resource for international comparative research. The wide range of measures used are mostly clinical with under-representation of measures important to care homes (e.g. quality of life). A national survey of care homes demonstrated the range of information, including clinical measures being routinely collected. The realist review identified motivation, front-line staff monitoring and embedded recording systems as important for minimum data set implementation. The pilot study recruited 996 residents from 45 care homes, with 727 residents’ data included in the minimum data set. Residents’ digital care records were linked to statutory health and social care data sets, creating a viable minimum data set prototype with metadata as resource. Conclusions: The study provided an evidence-based critique of care home research and a resource for secondary data analysis for future research. It developed a prototype minimum data set linking National Health Service, social care and care home data, demonstrating its importance as a basis for discussions between health and care staff. Limitations: The COVID-19 pandemic disrupted relationships and recruitment. Governance challenges prevented linking residents’ data to general practitioner records. Future work: Future research should assess whether the care home minimum data set improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use and digital technology implementation. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.

We explore the quality of life of older carers (aged 65 and above) and the people they support, as well as the role of services in promoting their quality of life, both on an individual and on a dyadic level. We collected data in England and, using a framework analysis, identify three themes that were shared by 28 carers and 11 individuals with support needs: (1) experience of support within and outside of the dyad; (2) dilemmas related to receiving social care services; and (3) the impact of COVID-19. This study suggests how to potentially improve their experience of support across different areas of their lives.

Purpose: Since the launch of Adult Social Care Outcomes Toolkit (ASCOT) in 2012, there has been increasing interest in use of ASCOT measures in social care research and evaluation, internationally. This scoping review seeks to understand ASCOT use and the methodologies within which the measures have been applied. Methods: An international scoping review of studies published between January 2012 and July 2024 that utilized ASCOT, excluding measure development and psychometric studies. Results: Fifty-five articles (11 protocols) reported use of ASCOT. Most reported cross-sectional studies (n = 19) or randomized controlled trials (n = 15) that explored the effectiveness of policy, interventions or systems. ASCOT measures were also applied in mixed methods and other study designs, including qualitative studies. A few studies applied ASCOT to develop theory or conceptual frameworks that relate to care, including how to understand unmet need. Conclusion: ASCOT measures have been applied, internationally, in a range of ways, with a focus on evaluation studies. Further research is required to explore how ASCOT is used in practice, including care planning. Focus is also needed on ensuring users select the appropriate measure for their study, and widen awareness of adapted versions to support data collection, like ASCOT easy read (ASCOT-ER).