Julie Beadle-Brown

Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England.Method: Participant observations and semi‐structured interviews with staff were carried out in two group homes. Field‐notes, interview notes and transcripts were analysed using inductive thematic analysis by a researcher naïve to the project and the previous literature. Initial coding was re‐examined after sensitisation to theorised models in previous literature to identify the most parsimonious fit. The two settings were rated and compared using a five‐point Likert scale for each of the dimensions.Results: The findings describe group home culture across seven dimensions. There were mixed ratings across the different dimensions reflecting inconsistencies in culture that were reflected in staff practice. The challenge in assigning a global rating of culture in group homes, which includes interactions across multiple staff and multiple residents over time, was highlighted.Conclusion: The development of an observational measure of culture is highlighted as potentially helpful in understanding and responding to culture in services for individuals with intellectual and developmental disabilities.

Autistic people commonly report differing sensory experiences. This research aimed to find out about sensory issues and the sensory environments of autistic adults who did and did not have intellectual disabilities. Online questionnaires were designed to identify sensory needs. The survey was completed by 138 autistic adults who self-reported and 58 informants reporting about autistic adults who had intellectual disabilities. Autistic adults self-reported high numbers of sensory needs compared with informant reports of the needs of autistic adults who had intellectual disabilities. It is possible that informants under-reported issues for autistic adults with intellectual disabilities. Some sensory needs are harder to observe and people with intellectual disabilities may find it difficult to communicate such needs. The authors propose that better methods of supporting communication of "harder to observe" sensory needs should be developed. Further research is needed.

Improv comedy is a small subset of improvisation, which has been under-researched. This study aims to investigate if the benefits agents experience match previous research. Literature discusses positivity, community, social and communication skills, and relaxation. The survey gained 128 global respondents answering a series of questions related to their improv experiences (as per stated literature topics), including in-depth demographic information. Improv has added value to most people’s lives, provided improvements to their socialization, and improved their communication. The respondents felt that they enjoyed the company of others, and they wanted the same. Most people trust their scene partner more often than not and felt that they were relaxed in their own group and as a guest. Variations within the global population are examined. The survey functions both reliably and validly, finding that past research fits the global population of those engaged in improv. Most respondents agree to the domains presented and trust their scene partner. Performing improv breeds trust and trust can lead to increased benefits in the domains. Nonetheless, there are no differences in represented groups of respondents on their experience of the benefits of improv.

Following the publication of the UN Convention on the Rights of Persons with a Disability, the rights and situation of people with disabilities have once again become a focus of national, European and international policy and advocacy. Mansell et al., ( 2007 Mansell, J. , M. Knapp, J. Beadle-Brown, and J. Beecham. 2007. “Deinstitutionalisation and Community Living—Outcomes and Costs: Report of a European Study.” Vol 2: Main Report. University of Kent, Canterbury. UK. [Google Scholar] ) identified that there were over 1million people with disabilities in Europe living in institutions of over 30 places in size and almost 1.4 million in some form of residential care. This paper reports findings from a review of national and international sources of data on living situation for 27 European countries as of 2019. Although there had been some changes, especially for children and especially in countries where EU structural funds had been used, there were still 1.4 million people living in residential care, with many still for more than 30 people. People with intellectual and developmental disabilities were those who were most likely to still be in residential services. We consider some of the potential reasons for these findings and discuss what might be needed to really advance deinstitutionalisation.

We aimed to develop and validate an instrument measuring perceived importance of indicators of the quality of social care services in different groups of stakeholders.671 respondents (249 represent...

Quality of public services including social services is an issue frequently discussed by policy makers, service providers, and by those who represent service users. The aim of this study was to explore how stakeholders perceive quality of social services, with a particular focus on (1) what did participants rate as important; (2) what is the relative importance of each domain and how does that differ across stakeholder groups and (3) does importance vary by participant characteristics. A specially designed questionnaire was completed by 217 service providers, by 249 public administration representatives and 205 service users of residential care and in-home support. The subjective quality of life of service users was rated as the most important indicator of service quality by all three stakeholder groups. Particularly important were items that related to the nature of the relationships and interactions between staff and service users. There were some differences between stakeholder groups and also by respondent characteristics – public administration respondents, older service users and providers of residential care were more likely to rate health care as more important than other respondents. Implications for how quality is measured are discussed.

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.