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AbstractBackgroundViews on social care related quality of life (SCRQol) are typically gathered directly from individuals or from proxy informants. Easy‐read options are available, although such methods may not be accessible to those with greater communication challenges.MethodsFifteen people with intellectual disabilities were interviewed about their SCRQoL using Talking Mats® (TM). A descriptive approach was taken to exploring what people had to say.ResultsParticipants reported high levels of satisfaction with living conditions and personal care routines. They were mostly satisfied with the level of choice and control they had and with their carers.ConclusionsPeople with intellectual disabilities who have greater communication challenges can make meaningful contributions to the assessment of the care they receive. Talking Mats is one tool which can be used to support people with intellectual disabilities to give their views.

BackgroundThe provision of skilled support is dependent on staff knowledge and understanding (Beadle‐Brown J., Beecham J., Mansell J., Baumker T., Leigh J., Whelton R. & Richardson L, unpublished data). Influencing staff knowledge and understanding is an important component of interventions.Materials and MethodsFourteen individual semi‐structured interviews elicited staff views and experiences of knowledge development. These were analysed using a thematic network analysis (Attride‐Stirling 2001, Qualitative Research 1, 385–405).ResultsThree global themes were identified; skills are developed from experience, service aims influence service delivery and practice is more important than theory. This article focuses on the first of these themes. Relationships between staff and service users played a central role in enabling development of knowledge. Although some skills were seen as transferrable, experience of a particular service user was described as being essential.ConclusionsSupport staff may not see the relevance of research findings, professional knowledge or training, unless these have involved direct work with the service user in question.

Background  This study sought to gather information about the impact of extended training in positive behaviour support on staff knowledge, causal attributions and emotional responses.Methods  Students completed questionnaires at the beginning, middle and end of a University Diploma course to measure changes in their knowledge of challenging behaviour, their causal attributions and their emotional responses.Results  Students' knowledge significantly increased across the three data points. Students became less likely to attribute challenging behaviour to emotional causes. Changes in respect of making more behavioural attributions varied across different measures. Negative emotional responses reduced especially those related to depression/anger.Conclusions  The training course presented here was associated with changes in student knowledge, attributions and emotional responses that are likely to be associated with better staff performance and better outcomes for people with intellectual disabilities.

AbstractThe disabled people's movements have successfully influenced public policies and laws. Self‐advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores "practice theory" through the analysis of interviews with advocates and self‐advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self‐advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: "informing and being informed," "using media," "supporting each other," "speaking up," and "bureaucratic duties." Contrary to several previous studies on self‐advocacy that emphasized "speaking up" as the main activity in advocacy, this study found that most practices of advocates and self‐advocates are "para‐advocacy" practices that may or may not lead directly to "speaking up." Practices of self‐advocates are often embedded in other everyday activities people do. The line between practices that belong to self‐advocacy and practices outside self‐advocacy may not always be clear even to self‐advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self‐advocates.

Courts in England, Wales and Northern Ireland have identified children and adults with intellectual disabilities (ID) as vulnerable witnesses. The call from the English Court of Appeal is for advocates to adjust questioning during cross-examination according to individual needs. This review systematically examined previous empirical studies with the aim of delineating the particular communication needs of children and adults with ID during cross-examination. Studies utilising experimental methodology similar to examination/cross-examination processes, or which assessed the communication of actual cross-examinations in court were included. A range of communication challenges were highlighted, including: suggestibility to leading questions and negative feedback; acquiescence; accuracy; memory and understanding of court language. In addition, a number of influencing factors were identified, including: age; IQ level; question styles used. This review highlights the need for further research using cross-examination methodology and live practice, that take into consideration the impact on communication of the unique environment and situation of the cross-examination process.

AbstractBackgroundEarly Positive Approaches to Support (E‐PAtS) is a co‐produced and co‐facilitated group programme that aims to provide early years support to family caregivers of children with Intellectual and Developmental Disabilities.MethodThirty‐five caregivers who had attended E‐PAtS groups took part in individual interviews or focus groups. Caregiver experiences concerning attendance of E‐PAtS were explored, in relation to process variables and perceived outcomes. Interviews were thematically analysed.ResultsThree major themes were identified: our group, evolving emotions, and positive approaches. Being with and being supported by other families was very important to caregivers. Families reported increased confidence and greater realisation of the need for self‐care. Children were reported to show fewer behaviours that challenge and increases in adaptive skills. Findings corresponded to mechanisms and outcomes in the E‐PAtS logic model.ConclusionE‐PAtS shows promise as one way families and children with Intellectual and Developmental Disabilities can access early years support.

AbstractIntroductionThis paper aims to identify to what extent staff training interventions are successful in enhancing the development of communication skills in people with profound intellectual and multiple disabilities.MethodsA systematic review was undertaken, conforming to PRISMA guidelines. English language, peer reviewed, empirical studies of staff training interventions to enhance the communication of people with profound intellectual and multiple disabilities were included. Databases Scopus, Web of Science, Proquest, Linguistics and Language Behaviour Abstracts (LLBA) and Medline were searched in July 2015 and updated in December 2022. Quality appraisal was conducted on 13 studies using Crowe's Critical Appraisal Tool (CCAT).ResultsFew good quality evaluations of interventions were found. Challenges to research rigour included the diversity of people with profound intellectual and multiple disabilities, small sample sizes, intervention intensity and the management of fidelity.ConclusionsManualised and bespoke interventions showed promise in improving staff communication and responsiveness.

BackgroundQuality of life of people with intellectual and developmental disabilities has been found to primarily depend on whether staff are providing facilitative and enabling support that helps to compensate for severity of disability. Managers have a key role in facilitating staff to provide such support.MethodQualitative interviews were conducted with 35 managers of supported accommodation services to explore service aims and the nature of, and challenges in providing, skilled support. Key themes were identified using a Thematic Networks Analysis.ResultsService aims were rarely formalised, were related to the individuals supported and not to the organisation. Managers found it difficult to define skilled support, other than by reference to individuals. Practice leadership roles were challenged as a result of austerity measures.ConclusionsFront‐line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed.

AbstractBackgroundDespite the importance of social networks for health and well‐being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks.MethodA systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed.ResultsQuantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation.ConclusionsStigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.

Objectives  Active support was implemented in three community houses (active support houses), with 11 service users with severe learning disabilities.Methods  This was evaluated with reference to changes in levels of engagement, challenging behaviour (major and minor) and staff contact, measured against three comparison services (non‐active support houses).Results  All measures increased for the active support houses. Significant increases in activity levels were found in one house. Statistically significant increases in activity and minor challenging behaviour were also found when all active support houses were compared with all non‐active support houses. In the non‐active support houses, all measures decreased, with the exception of mean level of staff contact in one house.Conclusions  Unlike previous research findings, those service users who were less able did not receive comparatively more support from staff post‐training and changes appeared unrelated to staff contact.

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.