Friendships in children with Williams syndrome : parent and child perspectives

Although children with Williams syndrome (WS) are strongly socially motivated, many have friendship difficulties. The parents of 21 children with WS and 20 of the children themselves participated in a semi-structured interview about the children's friendships. Parents reported that their child had difficulties sustaining friendships and low levels of interaction with peers. Barriers to friendships included difficulties with play and self-regulating behaviour. However, there was within-group variability, with a small number of children reported to have strong friendships. While parents reported friendship challenges, all of the children named at least one friend, and most said that they had never felt excluded by their peers. Future research is needed to determine optimal ways to support children with WS in their friendships

Adapting psychological interventions for people with severe and profound intellectual disabilities: a behavioural activation exemplar

Background: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. Method: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in-depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter-personal level and considering how the carer could support the person's engagement in activity. Results: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities

Coronavirus and people with learning disabilities study: Wave 4 Results: February 2023 (Full Report)

There are approximately 1.5 million people with learning (intellectual) disabilities across the UK. Throughout the COVID-19 pandemic, data indicated that people with learning disabilities were more likely to contract COVID-19, have a more severe case of COVID-19, and were at least three times more likely than people without learning disabilities to die from COVID-19. People with learning disabilities are a very diverse group; while some people need 24-hour support others have limited or no social care support. Inequalities in health, wellbeing, social isolation, employment and poverty that existed before COVID-19, along with separation from family and friends and changes to routines, may have been exacerbated during the COVID-19 pandemic. User-led organisations, families and social care support providers reported and continue to report multiple challenges associated with social restrictions, maintaining infection control, and the provision of social care support to people and families. There have also been geographical variations in social and health care services’ responses to COVID-19; in terms of both how and whether people receive support. We have written about these issues in earlier reports from the project. Large-scale COVID-19 surveys, with their general population remit, used methods (e.g., online surveys) likely to exclude most people with learning disabilities. Even when these surveys were nationally representative, they did not include sufficient numbers of people with learning disabilities to allow for meaningful analysis across different parts of the UK. They also did not have the flexibility to ask questions of specific relevance to people with learning disabilities. These larger surveys were typically being carried out without the specific resources and expertise that would enable the direct interview methods, with adapted questions and trained interviewers, needed for people with learning disabilities to participate. The project reported here uses these direct interview methods and was designed to systematically and responsively track the experiences of adults with learning disabilities through the COVID-19 pandemic over time across the UK, and investigate swiftly actionable factors associated with better outcomes. For Wave 4 of the project, the research team continued to examine the ongoing impact of the pandemic on the lives of people with learning disabilities in the UK. However, by Wave 4 of the project (the focus in this report), the study also began to look more broadly at the current living circumstances of people with learning disabilities in the UK in the context of a pathway into recession and challenges for public services

Behavioural activation for depressive symptoms in adults with severe to profound intellectual disabilities: modelling and initial feasibility study

Background Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. Method Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. Results Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. Conclusion COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted

The experiences of adults with learning disabilities in the UK during the COVID-19 pandemic: qualitative results from Wave 1 of the Coronavirus and people with learning disabilities study

Purpose The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK. Design/methodology/approach Interviews were conducted with 609 adults with learning disabilities. Family carers and support staff of another 351 adults with learning disabilities completed a proxy online survey. The data were collected between December 2020 and February 2021 and concerned both worries/negatives and anything positive that had happened because of the COVID-19 pandemic. Findings Social isolation was the most commonly reported worry/negative for adults with learning disabilities, with other frequently reported worries/negatives including: changes to/loss of routine; loss of support/services; and decreased health/well-being/fitness. A large proportion of participants indicated that nothing positive had happened because of COVID-19, but some positives were reported, including: digital inclusion; more time spent with important people; improved health/well-being/fitness; and, a slower pace of life. Practical implications Future pandemic planning must ensure that adults with learning disabilities are supported to maintain social contact with the people who matter to them and to support their health and well-being (including maintaining access to essential services and activities). Some adults with learning disabilities may benefit from additional support to improve their digital confidence and access. This may in turn enable them to maintain contact with family, friends and support services/activities. Originality/value This is the largest study about the experiences of adults with learning disabilities during the COVID-19 pandemic in the UK. The authors primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities throughout the study