Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic.

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.

A systematic review of research on staff training as an intervention to develop communication in children and adults with profound intellectual and multiple disabilities.

INTRODUCTION: This 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. METHODS: A 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). RESULTS: Few 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. CONCLUSIONS: Manualised and bespoke interventions showed promise in improving staff communication and responsiveness.

Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England.

BACKGROUND: One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised ("service models") in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. METHODS: Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., "service models"). RESULTS: The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). CONCLUSIONS: Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care. STUDY REGISTRATION: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022.

Exploring the social care-related quality of life outcomes of adults with intellectual disabilities through the use of Talking Mats®.

BACKGROUND: Views 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. METHODS: Fifteen 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. RESULTS: Participants 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. CONCLUSIONS: People 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.

Early positive approaches to support (E-PAtS): Qualitative experiences of a new support programme for family caregivers of young children with intellectual and developmental disabilities.

BACKGROUND: Early 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. METHOD: Thirty-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. RESULTS: Three 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. CONCLUSION: E-PAtS shows promise as one way families and children with Intellectual and Developmental Disabilities can access early years support.

'There isn't a checklist in the world that's got that on it': Special needs teachers' opinions on the assessment and teaching priorities of pupils on the autism spectrum.

Two focus groups were conducted with special needs teachers to: (a) identify barriers to learning for autistic pupils, (b) consider broad assessment domains and specific skills or behaviours which teachers consider important for these pupils, and (c) give their opinions on teacher assessments. Data analysis resulted in six main themes: (a) barriers to learning, (b) teacher priorities for autistic pupils, (c) ways of overcoming barriers, (d) the concept of 'true mastery', (e) assessing the bigger picture, and (f) practicalities of assessment. Results showed that teachers have priorities for the pupils they know well and concerns about the assessments they regularly use. To ensure face and content validity of teacher assessments, and for assessments to be useful to and valued by the teachers who use them, it is recommended that teachers have opportunities to input during various aspects of the assessment development process.

The preliminary validity and reliability of the Assessment of Barriers to Learning in Education - Autism.

BACKGROUND: Few robust autism-specific outcome assessments have been developed specifically for use by teachers in special schools. The Assessment of Barriers to Learning in Education - Autism (ABLE-Autism) is a newly developed teacher assessment to identify and show progress in barriers to learning for pupils on the autism spectrum with coexisting intellectual disabilities. AIMS: This study aimed to conduct a preliminary validity and reliability evaluation of the ABLE-Autism. METHODS AND PROCEDURES: Forty-eight autistic pupils attending special schools were assessed using the ABLE-Autism. Multi-level modelling was used to evaluate test-retest reliability, internal consistency and convergent validity with the Teacher Autism Progress Scale. OUTCOMES AND RESULTS: Results showed excellent test-retest reliability and internal consistency. A large effect size suggested that the ABLE-Autism is strongly correlated with the Teacher Autism Progress Scale. Teacher feedback was positive and suggested that the ABLE-Autism is easily understood by teachers, relevant to autistic pupils in special schools, and adequately covers the skills and behaviours that teachers believe are important to assess for these pupils. CONCLUSIONS AND IMPLICATIONS: Although further validation is recommended, the preliminary evaluation of the ABLE-Autism suggests that it is a useful and has the potential to be an effective outcome assessment for autistic pupils in special schools.

Social networks and people with intellectual disabilities: A systematic review.

BACKGROUND: Despite 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. METHOD: A 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. RESULTS: Quantitative, 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. CONCLUSIONS: Stigma 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.

Early Positive Approaches to Support (E-PAtS) for Families of Young Children With Intellectual Disability: A Feasibility Randomised Controlled Trial.

Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being. The aim of this study was to assess the feasibility of community service provider organisations delivering E-PAtS to parents/family caregivers of young children with intellectual disability, to inform a potential definitive randomised controlled trial of the effectiveness and cost-effectiveness of E-PAtS. Methods: This study was a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to two parents/family caregivers of a child (18 months to <6 years old) with intellectual disability were recruited at research sites and allocated to intervention (E-PAtS and usual practise) or control (usual practise) on a 1:1 basis at cluster (family) level. Data were collected at baseline and 3 and 12 months' post-randomisation. The following feasibility outcomes were assessed: participant recruitment rates and effectiveness of recruitment pathways; retention rates; intervention adherence and fidelity; service provider recruitment rates and willingness to participate in a future trial; barriers and facilitating factors for recruitment, engagement, and intervention delivery; and feasibility of collecting outcome measures. Results: Seventy-four families were randomised to intervention or control (n = 37). Retention rates were 72% at 12 months post-randomisation, and completion of the proposed primary outcome measure (WEMWBS) was 51%. Recruitment of service provider organisations and facilitators was feasible and intervention implementation acceptable. Adherence to the intervention was 76% and the intervention was well-received by participants; exploratory analyses suggest that adherence and attendance may be associated with improved well-being. Health economic outcome measures were collected successfully and evidence indicates that linkage with routine data would be feasible in a future trial. Conclusions: The E-PAtS Feasibility RCT has demonstrated that the research design and methods of intervention implementation are generally feasible. Consideration of the limitations of this feasibility trial and any barriers to conducting a future definitive trial, do however, need to be considered by researchers. Clinical Trial Registration: https://www.isrctn.com, identifier: ISRCTN70419473.

The Early Positive Approaches to Support (E-PAtS) study: study protocol for a feasibility cluster randomised controlled trial of a group programme (E-PAtS) for family caregivers of young children with intellectual disability.

BACKGROUND: Children with intellectual disability have an IQ < 70, associated deficits in adaptive skills and are at increased risk of having clinically concerning levels of behaviour problems. In addition, parents of children with intellectual disability are likely to report high levels of mental health and other psychological problems. The Early Positive Approaches to Support (E-PAtS) programme for family caregivers of young children (5 years and under) with intellectual and developmental disabilities is a group-based intervention which aims to enhance parental psychosocial wellbeing and service access and support positive development for children. The aim of this study is to assess the feasibility of delivering E-PAtS to family caregivers of children with intellectual disability by community parenting support service provider organisations. The study will inform a potential, definitive RCT of the effectiveness and cost-effectiveness of E-PAtS. METHODS: This study is a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to 2 family caregivers will be recruited from 64 families with a child (18 months to 5 years) with intellectual disability at research sites in the UK. Participating families will be allocated to intervention: control on a 1:1 basis; intervention families will be offered the E-PAtS programme immediately, continuing to receive usual practice, and control participants will be offered the opportunity to attend the E-PAtS programme at the end of the follow-up period and will continue to receive usual practice. Data will be collected at baseline, 3 months post-randomisation and 12 months post-randomisation. The primary aim is to assess feasibility via the assessment of: recruitment of service provider organisations; participant recruitment; randomisation; retention; intervention adherence; intervention fidelity and the views of participants, intervention facilitators and service provider organisations regarding intervention delivery and study processes. The secondary aim is preliminary evaluation of a range of established outcome measures for individual family members, subsystem relationships and overall family functioning, plus additional health economic outcomes for inclusion in a future definitive trial. DISCUSSION: The results of this study will inform a potential future definitive trial, to evaluate the effectiveness and cost-effectiveness of the E-PAtS intervention to improve parental psychosocial wellbeing. Such a trial would have significant scientific impact internationally in the intellectual disability field. TRIAL REGISTRATION: ISRCTN70419473.

Managers' views of skilled support.

BACKGROUND: Quality 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. METHOD: Qualitative 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. RESULTS: Service 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. CONCLUSIONS: Front-line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed.

Staff views of the importance of relationships for knowledge development: is training by specialists a waste of money?

BACKGROUND: The 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  METHODS: Fourteen 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). RESULTS: Three 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. CONCLUSIONS: Support 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.

Comparison of nasal tampons for the treatment of epistaxis in the emergency department: a randomized controlled trial.

STUDY OBJECTIVE: Nasal tampons are commonly used to stop bleeding, yet their insertion is painful. We compare the pain of insertion and removal of 2 commonly used nasal tampons. METHODS: This was a prospective randomized controlled trial in 1 urban and 1 suburban emergency department (ED). Subjects were a convenience sample of adult ED patients with active epistaxis requiring insertion of a nasal tampon, regardless of coagulation status. Pretreatment of the nasal mucosa was performed using an aerosolized lidocaine-Neo-Synephrine combination. Patients were randomized to tamponade with a single Rapid Rhino or Rhino Rocket nasal tampon. The pain and ease of insertion and success of tamponade were recorded. Tampon removal was performed after 1 to 3 days, and the pain and ease of removal, as well as the presence of any bleeding, were noted. Patients rated pain of insertion and removal on a previously validated 100-mm visual analogue pain scale (100=worst pain). Physician ease of insertion and removal was recorded on a 5-point Likert scale. Continuous data are presented as means and 95% confidence intervals (CIs). RESULTS: We evaluated 40 patients evenly distributed between study groups and sites. Median patient age was 61 years (interquartile range 48 to 79 years), and 33% were female patients. Coagulopathy was present in 10 (25%) patients. Baseline characteristics were similar in both treatment groups. The mean pain of insertion of the Rapid Rhino (30 mm, 95% CI 18 to 41 mm) was significantly less than with the Rhino Rocket (48 mm, 95% CI 34 to 61 mm; mean difference 18 mm, 95% CI 1 to 35 mm). The mean pain of removal of the Rapid Rhino (11 mm, 95% CI 1 to 21 mm) was also lower than with the Rhino Rocket (23 mm, 95% CI 13 to 33 mm; mean difference 12 mm, 95% CI -1 to 25 mm). The Rapid Rhino was also easier to insert and remove and had a lower incidence of recurrent bleeding after removal than the Rhino Rocket. Rates of successful tamponade were similar in the 2 groups. CONCLUSION: The Rapid Rhino nasal tampon is less painful to insert and easier to remove than the Rhino Rocket, whereas both are similarly effective at stopping nosebleeds.

RdgB acts to avoid chromosome fragmentation in Escherichia coli.

Bacterial RecA protein is required for repair of two-strand DNA lesions that disable whole chromosomes. recA mutants are viable, suggesting a considerable cellular capacity to avoid these chromosome-disabling lesions. recA-dependent mutants reveal chromosomal lesion avoidance pathways. Here we characterize one such mutant, rdgB/yggV, deficient in a putative inosine/xanthosine triphosphatase, conserved throughout kingdoms of life. The rdgB recA lethality is suppressed by inactivation of endonuclease V (gpnfi) specific for DNA-hypoxanthines/xanthines, suggesting that RdgB either intercepts improper DNA precursors dITP/dXTP or works downstream of EndoV in excision repair of incorporated hypoxathines/xanthines. We find that DNA isolated from rdgB mutants contains EndoV-recognizable modifications, whereas DNA from nfi mutants does not, substantiating the dITP/dXTP interception by RdgB. rdgB recBC cells are inviable, whereas rdgB recF cells are healthy, suggesting that chromosomes in rdgB mutants suffer double-strand breaks. Chromosomal fragmentation is indeed observed in rdgB recBC mutants and is suppressed in rdgB recBC nfi mutants. Thus, one way to avoid chromosomal lesions is to prevent hypoxanthine/xanthine incorporation into DNA via interception of dITP/dXTP.