Agnes Turnpenny

Background: The increased use of digital technologies in adult social care is a growing priority for governments globally. This includes the use of information and communication technologies by social care professionals to communicate with adults with social care needs. As part of this, synchronous virtual communication can be used by individuals to access social care services. This systematic review and narrative synthesis of the international literature explored individuals’ experiences accessing services using synchronous virtual communication. Methods: Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines were followed to systematically search for studies reporting on experiences of adults with social care needs using synchronous virtual communication to interact with social care. Systematic searches were conducted across PubMed, CINAHL, SCIE and Social Services Abstracts to identify literature published between January 2020 and November 2024. Google and Google Scholar were searched for the grey literature. The quality appraisal of the included literature was conducted using the appropriate Critical Appraisal Skills Programme (CASP) checklist. Themes and subthemes were identified in the process of narrative synthesis. Results: Out of 6172 screened abstracts, 18 articles were selected for inclusion. The narrative synthesis led to the identification of both ‘digital exclusion’ and ‘digital inclusion’, as well as subthemes that explain these phenomena. These included evidence of exclusion due to a ‘lack of availability’, ‘lack of capacity’ and ‘security concerns’, and evidence of inclusion due to ‘the adaptability of social care’ and the ‘positive individual experiences’ of some adults. Limitations: Studies often grouped social care together with health care, so it was not always possible to know that the extracted data spoke directly to our research question. Conclusion: The roll‐out of synchronous virtual communication within adult social care excluded some individuals but also benefited others, suggesting that a nuanced approach is required to ensure equitable access.

While the representation of persons with disabilities in society is typically reflected in their appearance in the media, the media also reacts to reality, creating common language and perceptions. In the framework of the TARKI research entitled Changing and New Mechanisms of Exclusion of People with Disabilities, we examined articles published over a three-year period (1 May 2019 – 30 April 2022) on one of the largest Hungarian news portals, 24.hu. We sought to answer the question of to what extent and how online news media view persons with disabilities and how they are portrayed. The results show that there is a continuous dynamic of difference-similarity in disability representations. Many factors are at work to marginalize, exclude and make invisible people with disabilities (e.g., low incidence, medicalization, infantilization, belittling, taboo), but an alternative, resistant perspective also emerges, which presents a more diverse picture and in which the voices of those affected themselves are heard (blogs, websites, social media platforms, etc.).

Migrant care workers play a significant role in meeting the escalating demand for social care in the UK. Workforce shortages create opportunities for new migrants to enter the social care workforce. This scoping review aims to identify and synthesise available evidence on the contribution of migrant workers to the provision of home care in the UK focusing on care worker and service outcomes as well as sustainability, and identify challenges and gaps in the context of Brexit and changing immigration policies. Twenty-two articles were identified for inclusion in the review and extracted using a structured format. The analysis presents a narrative description and synthesis of the research. Findings from the reviewed articles were grouped into five main themes: migrant, user and employer outcomes, effect on workforce, and sustainability—and 15 sub-themes that were described in detail. Much of the existing research on migrant care work is qualitative and focuses on migrant outcomes. The review identified some important gaps in research, namely, the impact of immigration status on migrant care worker outcomes, the cultural and psychological adaptation of migrant care workers to care practices, and the emerging UK live-in care market. Implications of findings are discussed in the context of post-Brexit immigration system.

Accessible summary: 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. 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: The ASCOT-ER is an adapted easy-read version of the ASCOT-SCT4, a self-report 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.

This chapter provides an overview of how the situation of people with intellectual disabilities transformed in Hungary during the twentieth century. Focusing on four main historical periods – pre-1945, state socialism between 1945 and 1989, the era of post-socialist transformation from 1990, and the current period following Hungary’s European Union membership in 2004 – it highlights the development of policy and practice, and their impact on people. The chapter mostly draws on historical sources, and the analysis of published data and research. In addition, three vignettes illustrate some ‘typical themes’ in the life trajectories of individuals with intellectual disabilities and the various forms of exclusion they face in contemporary Hungary. Although the country underwent major political and societal transformation in the twentieth century, the exclusion of people with intellectual disabilities – and their families – remained a constant feature across historical eras and political regimes.

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.

User choice and personalisation have been at the centre of health and social care policies in many countries. Exercising choice can be especially challenging for people with long-term conditions (LTC) or disabilities. Information about the quality, cost and availability of services is central to user choice. This study used systematic review methods to synthesise evidence in three main areas: (i) how people with LTC or disabilities and their family carers find and access information about the quality of services; (ii) how quality information is used in decision-making; and (iii) what type of quality information is most useful. Quality information was defined broadly and could include formal quality reports (e.g. inspection reports, report cards, etc.), information about the characteristics of a service or provider (e.g. number and qualifications of staff, facilities, etc.) and informal reports about quality (e.g. personal experience, etc.). Literature searches were carried out using electronic databases in January 2012. Thirteen papers reporting findings from empirical studies published between 2001 and 2012 were included in the review. The majority of papers (n = 9) had a qualitative design. The analysis highlighted the use of multiple sources of information in decision-making about services and in particular the importance of informal sources and extended social networks in accessing information. There is limited awareness and use of 'official' and online information sources. Service users or family carers place greater emphasis on general information and structural indicators. Clinical or quality-of-life outcomes are often difficult to interpret and apply. Trust emerged a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted. Various barriers to the effective use of quality information in making choices about services are identified. Implications for policy and future research are discussed.