Search

Purpose: With a historic lack of attention to synthesis methods such as systematic review and meta-analysis and a lack of randomised controlled trials, the evidence base for behavioural interventions for children and adults who are autistic or are diagnosed with developmental disabilities is patchy. The Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN), a network of like-minded researchers and practitioners across the UK, aims to address this. The purpose of this paper is to describe the network's work and provide the context for the remaining articles in the special issue that exemplify network projects. Design/methodology/approach: In this case study paper, the authors describe how the SF-DDARIN works and is resourced, detailing the process used to maximise research opportunities by facilitating network members working together. The authors outline the progressive research steps that the SF-DDARIN has identified are needed to develop and improve the evidence base for behavioural interventions systematically and, with examples, describe how the network delivers these steps. Findings: Since its establishment in 2016, the SF-DDARIN network members have collectively worked on more than 53 projects involving over 50 researchers, had over 120 special schools contribute to projects and have recruited over 500 participants. This has been achieved through funding from the Sharland Foundation, primarily to cover the staffing costs of a small support team and internship partnerships with external organisations. Some projects have attracted external funding. Originality/value: SF-DDARIN may provide an innovative, effective and resource-efficient model for other groups seeking to develop and extend their evidence base in developmental disability research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: Evidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to promote deprescribing, such as stopping the overprescribing of medication in people (with learning disabilities, autism or both). To successfully implement deprescribing initiatives, we need to understand how to engage stakeholders in the process. Design/methodology/approach: In a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines for people of all ages with intellectual disabilities and challenging behaviour. As a part of the original review, we searched for evidence about stakeholders' experiences of the psychotropic deprescribing process, which was synthesised and reported within the current study. Findings: Six studies were identified. Involving carers and people with intellectual disabilities, providing ongoing support and improving access to non-pharmacological interventions, including positive behaviour support, may contribute to successful outcomes, including reducing or stopping psychotropic medicines and improving quality of life. Implementing psychotropic deprescribing requires a multidisciplinary collaborative care approach and education for stakeholders. Originality/value: There have been no previous reviews of stakeholder experiences of deprescribing psychotropic medications for people with intellectual disabilities and challenging behaviour. The existing literature is scant, and further research is needed. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to investigate the prevalence and characteristics of dysphagia among adults with intellectual disabilities (ID) referred to speech and language therapy for swallow assessment, providing information on the demographic characteristics, referral trends, co-occurring health conditions and reasons for referrals highlighting the complex health-care needs of this population. Design/methodology/approach: This study used a standardised patient data extraction method over a six-month period involving 74 adults with ID referred to speech and language therapy for swallow assessment. Findings: This study revealed a high prevalence of dysphagia among adults with ID referred to speech and language therapy for swallow assessment. Increasing age and severity of ID were associated with an increased likelihood of swallowing difficulties. Co-occurring health conditions such as mobility difficulties, epilepsy and gastrointestinal conditions were prevalent, suggesting that adults with ID and swallowing difficulties are often living with complex health conditions. Choking incidents and hospital admissions were primary reasons for referral. Research limitations/implications: This study stresses the pressing need for strategies to mitigate risks associated with choking incidents and hospital admission among this vulnerable population. Possible limitations include a reliance on referral and the focus being on a single service over a short period which may limit generalisation to the wider ID population. Practical implications: This study emphasises the need to understand each person's unique profile of health needs and the value of a specialised speech and language therapy service. Social implications: The importance of increasing awareness among caregivers and medical experts is highlighted. Originality/value: The findings underscore the importance of tailored assessment, caregiver involvement and heightened interdisciplinary awareness to effectively manage dysphagia in individuals with ID. [ABSTRACT FROM AUTHOR]