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.

Interventions addressing challenging behaviours in Arab children and adults with intellectual disabilities and/or autism: A systematic review.

BACKGROUND: Arabs with intellectual disabilities and/or autism may exhibit challenging behaviour that affects them and their caregivers. Early, appropriate intervention may reduce these effects. This review synthesised and critically appraised challenging behaviour intervention research for this population. METHODS: All published empirical research on challenging behaviour interventions for Arabs with intellectual disabilities and/or autism was included. In September 2022, 15 English and Arabic databases yielded 5282 search records. Studies were appraised using the MMAT. Review findings were narratively synthesised. RESULTS: The 79 included studies (n = 1243 participants) varied in design, intervention, and evaluation method. Only 12.6% of interventions were well-designed and reported. Arab interventions primarily targeted children, were applied collectively on small samples, lacked individualised assessment, and were based on an inconsistent understanding of challenging behaviour. CONCLUSION: The evidence base on interventions for Arabs with intellectual disabilities and/or autism and challenging behaviour needs strengthening. Attention should be given to culturally relevant adaptations.

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.

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.

Deprescribing psychotropic medicines for behaviours that challenge in people with intellectual disabilities: a systematic review.

BACKGROUND: Clear evidence of overprescribing of psychotropic medicines to manage behaviours that challenges in people with intellectual disabilities has led to national programmes within the U.K. such as NHS England's STOMP to address this. The focus of the intervention in our review was deprescribing of psychotropic medicines in children and adults with intellectual disabilities. Mental health symptomatology and quality of life were main outcomes. METHODS: We reviewed the evidence using databases Medline, Embase, PsycINFO, Web of Science, CINAHL and Open Grey with an initial cut-off date of 22nd August 2020 and an update on 14th March 2022. The first reviewer (DA) extracted data using a bespoke form and appraised study quality using CASP and Murad tools. The second reviewer (CS) independently assessed a random 20% of papers. RESULTS: Database searching identified 8675 records with 54 studies included in the final analysis. The narrative synthesis suggests that psychotropic medicines can sometimes be deprescribed. Positive and negative consequences were reported. Positive effects on behaviour, mental and physical health were associated with an interdisciplinary model. CONCLUSIONS: This is the first systematic review of the effects of deprescribing psychotropic medicines in people with intellectual disabilities which is not limited to antipsychotics. Main risks of bias were underpowered studies, poor recruitment processes, not accounting for other concurrent interventions and short follow up periods. Further research is needed to understand how to address the negative effects of deprescribing interventions. TRIAL REGISTRATION: The protocol was registered with PROSPERO (registration number CRD42019158079).

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.

The association between home learning during COVID-19 lockdowns and subsequent school attendance among children with neurodevelopmental conditions.

BACKGROUND: Children with neurodevelopmental conditions have high levels of school absence. During the COVID-19 pandemic, schools closed for many students. The relationship between home learning during school closures and subsequent school attendance requires attention to better understand the impact of pandemic education policy decisions on this population. This study aims to investigate the association between home learning, hybrid learning and school learning during school closures (in January-March 2021) with subsequent school attendance (in May 2021) in children with neurodevelopmental conditions. METHODS: An online survey was completed by 809 parents/carers of 5- to 15-year-old autistic children and/or children with intellectual disability. Regression models examined the association of learning location during school closures with subsequent school absence (i.e., total days missed, persistent absence and school refusal). RESULTS: Children who were learning from home during school closures later missed 4.6 days of a possible 19. Children in hybrid and school learning missed 2.4 and 1.6 school days, respectively. The rates of school absence and persistent absence were significantly higher in the home learning group even after adjusting for confounders. Learning location was not associated with subsequent school refusal. CONCLUSIONS: Policies for school closures and learning from home during public health emergencies may exacerbate school attendance problems in this group of vulnerable children.

Mechanisms of change in Behavioral Activation: Adapting depression treatment for autistic people.

Despite high rates of co-occurring depression, few studies have developed or adapted treatments targeting depressive symptoms for autistic adults. Behavioral activation is widely accepted as an empirically-supported approach for treating depression in other populations. Careful attention to the mechanisms targeted by behavioral activation is an essential step toward adapting behavioral activation protocols for use with autistic adults. We consider the mechanisms targeted by behavioral activation and provide a framework for research to explore the facilitators and barriers to the use of behavioral activation to treat depression in autistic adults. Drawing upon clinical experience and extant literature, the suggestions presented are aimed at highlighting considerations for clinicians wanting to use behavioral activation programs in their clinical practices with autistic adults and to promote the research needed to establish behavioral activation as an evidence-based practice for treating depression in adults on the autism spectrum.

Challenging behaviour and its risk factors in children and young people in a special school setting: A four wave longitudinal study.

BACKGROUND: Longitudinal research is needed to strengthen evidence for risk factors for challenging behaviour in children with intellectual disabilities and to understand patterns of change over time. METHODS: Data on challenging behaviour were collected for 225 students in one school over four annual time points and a range of potential risk correlates. Data were analysed using Generalised Estimating Equations. RESULTS: Prevalence of challenging behaviour, aggression and self-injury did not vary significantly over time. Stereotyped behaviours increased over the 4-year period. Challenging behaviour was associated with lower levels of adaptive skills and autism. Stereotyped behaviour increased with age. Self-injurious behaviour was less likely to be shown in children with profound intellectual disabilities over time. CONCLUSIONS: These findings are consistent with previous research in terms of potential risk factors identified. Implications for schools include proactive interventions for children with intellectual disabilities at high risk; especially those with autism and poorer adaptive skills.

The UK stand together trial: protocol for a multicentre cluster randomised controlled trial to evaluate the effectiveness and cost-effectiveness of KiVa to reduce bullying in primary schools.

BACKGROUND: Reducing bullying is a public health priority. KiVa, a school-based anti-bullying programme, is effective in reducing bullying in Finland and requires rigorous testing in other countries, including the UK. This trial aims to test the effectiveness and cost-effectiveness of KiVa in reducing child reported bullying in UK schools compared to usual practice. The trial is currently on-going. Recruitment commenced in October 2019, however due to COVID-19 pandemic and resulting school closures was re-started in October 2020. METHODS: Design: Two-arm pragmatic multicentre cluster randomised controlled trial with an embedded process and cost-effectiveness evaluation. PARTICIPANTS: 116 primary schools from four areas; North Wales, West Midlands, South East and South West England. Outcomes will be assessed at student level (ages 7-11 years; n = approximately 13,000 students). INTERVENTION: KiVa is a whole school programme with universal actions that places a strong emphasis on changing bystander behaviour alongside indicated actions that provide consistent strategies for dealing with incidents of bullying. KiVa will be implemented over one academic year. COMPARATOR: Usual practice. PRIMARY OUTCOME: Student-level bullying-victimisation assessed through self-report using the extensively used and validated Olweus Bully/Victim questionnaire at baseline and 12-month follow-up. SECONDARY OUTCOMES: student-level bullying-perpetration; student mental health and emotional well-being; student level of, and roles in, bullying; school related well-being; school attendance and academic attainment; and teachers' self-efficacy in dealing with bullying, mental well-being, and burnout. SAMPLE SIZE: 116 schools (58 per arm) with an assumed ICC of 0.02 will provide 90% power to identify a relative reduction of 22% with a 5% significance level. RANDOMISATION: recruited schools will be randomised on 1:1 basis stratified by Key-Stage 2 size and free school meal status. Process evaluation: assess implementation fidelity, identify influences on KiVa implementation, and examine intervention mechanisms. Economic evaluation: Self-reported victimisation, Child Health Utility 9D, Client Service Receipt Inventory, frequency of services used, and intervention costs. The health economic analysis will be conducted from a schools and societal perspective. DISCUSSION: This two-arm pragmatic multicentre cluster randomised controlled trial will evaluate the KiVa anti-bullying intervention to generate evidence of the effectiveness, cost-effectiveness and scalability of the programme in the UK. Our integrated process evaluation will assess implementation fidelity, identify influences on KiVa implementation across England and Wales and examine intervention mechanisms. The integrated health economic analysis will be conducted from a schools and societal perspective. Our trial will also provide evidence regarding the programme impact on inequalities by testing whether KiVa is effective across the socio-economic gradient. TRIAL REGISTRATION: Trials ISRCTN 12300853 Date assigned 11/02/2020.

Modelling triadic relationships in families of children with intellectual disability.

BACKGROUND: Existing research has predominately focused on dyadic relationships in families of children with intellectual disabilities. The aim of this study was to build on emerging literature exploring triadic relationships between a mother, sibling, and child with intellectual disability, investigating how they influence each other's well-being. METHOD: An online survey was used to collect information regarding the mother's mental health and the emotional and behavioural problems of the sibling and the child with intellectual disability in 573 families. RESULTS: Using structural equation modelling, we found that maternal psychological distress was associated with higher levels of behaviour problems in the sibling, and the behaviour problems of the child with intellectual disability were associated with higher levels of maternal distress. CONCLUSIONS: Family member well-being is inter-related in families of children with intellectual disabilities. Clinical interventions that improve the behaviours of children with intellectual disabilities should be considered.

Positive behavioural support for children and young people with developmental disabilities in special education settings: A systematic review.

BACKGROUND: Positive behavioural support (PBS) can be effective in supporting children and young people (CYP) with developmental disabilities. This systematic review focused on describing the components and nine characteristics of PBS that have been used with CYP with developmental disabilities in special education settings, and the evidence for PBS effectiveness in these settings. Additionally, facilitators and barriers to PBS implementation, and experiences of stakeholders, were investigated. METHOD: Systematic searches followed a registered protocol, and 30 studies were identified, narratively synthesised, and critically appraised. RESULTS: From the 30 studies included, 10 reported the presence of all 9 PBS characteristics, 17 reported on 8 PBS characteristics, and 3 reported on 7 characteristics. Overall, 28 studies demonstrated significant decreases in behaviours that challenge and increases in alternative behaviours, if increasing alternative behaviours was part of the interventions. CONCLUSIONS: There was a lack of evidence on facilitators and barriers, and a lack of qualitative studies exploring experiences of stakeholders with PBS in special education settings. The available evidence suggested that not all studies reported on all PBS characteristics when describing the approach followed. In addition, available evidence suggested that most studies demonstrated effectiveness of PBS regarding the measured outcomes. Implications and future directions are discussed.

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.

'Standing up for Myself' (STORM): Development and qualitative evaluation of a psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma.

BACKGROUND: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. METHOD: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2-4 months after the intervention assessed perceived impact. RESULTS: Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self-efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre-existing self-advocacy skills was noted. CONCLUSIONS: This early-stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.

Clinical utility of the parent-reported Strengths and Difficulties Questionnaire as a screen for emotional and behavioural difficulties in children and adolescents with intellectual disability.

We assessed the clinical utility of the parent-reported Strengths and Difficulties Questionnaire (SDQ) as a screen for emotional and behavioural difficulties in 626 children and young people with intellectual disability. Using the Developmental Behavior Checklist (DBC2-P) to determine clinical caseness, the area under the curve for the SDQ total difficulties score was 0.876 (95% CI 0.841-0.911), indicating that it is a good measure for identifying significant emotional and behavioural difficulties requiring further investigation. Analyses supported the use of the same SDQ cut-off for those with and without intellectual disability, which may assist with consistent and comparable assessment in clinical practice.

Psychological interventions for depression in children and young people with an intellectual disability and/or autism: systematic review.

BACKGROUND: Children and young people with intellectual disability and/or Autism Spectrum Disorder (autism) experience higher rates of mental health problems, including depression, than their typically developing peers. Although international guidelines suggest psychological therapies as first-line intervention for children and young people, there is limited evidence for psychological therapy for depression in children and young people with intellectual disability and/or autism. AIMS: To evaluate the current evidence base for psychological interventions for depression in children and young people with intellectual disability and/or autism, and examine the experiences of children and young people with intellectual disability and/or autism, their families and therapists, in receiving and delivering psychological treatment for depression. METHOD: Databases were searched up to 30 April 2020 using pre-defined search terms and criteria. Articles were independently screened and assessed for risk of bias. Data were synthesised and reported in a narrative review format. RESULTS: A total of 10 studies met the inclusion criteria. Four identified studies were clinical case reports and six were quasi-experimental or experimental studies. All studies were assessed as being of moderate or high risk of bias. Participants with intellectual disability were included in four studies. There was limited data on the experiences of young people, their families or therapists in receiving or delivering psychological treatment for depression. CONCLUSIONS: Well-designed, randomised controlled trials are critical to develop an evidence base for psychological treatment for young people with intellectual disability and/or autism with depression. Future research should evaluate the treatment experiences of young people, their families and therapists.

Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review.

An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review.

BACKGROUND: Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access. METHOD: We propose a framework where access to EI is conceptualised as a process that includes three main phases. A narrative review examined potential barriers, facilitators and modifiers of access for each phase. RESULTS: The process of access to EI includes the following: 1) recognition of need, 2) identification or diagnosis and 3) EI provision or receipt. Several factors affecting access to EI for each phase were identified, related to the family, services, the intersection between family and services, and the context. CONCLUSION: A broad range of factors appear to influence the process of access to EI for this population. Our framework can be used in future research investigating access. Broad implications for policy, practice and future research to improve access to EI are discussed.

The experiences of therapists providing psychological treatment for adults with depression and intellectual disabilities as part of a randomised controlled trial.

BACKGROUND: Health professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy. METHOD: Twenty-seven participants took part in six focus groups, and the data were subject to a Framework Analysis. RESULTS: The structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service-user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions. CONCLUSIONS: The findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

Family network typologies of adults with intellectual disability: Associations with psychological outcomes.

BACKGROUND: Based on self-reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well-being and typologies were investigated. METHOD: 137 participants with mild intellectual disability were interviewed using the Family Network Method-Intellectual Disability to assess their emotionally supportive family relationships. Data on participants' well-being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures. RESULTS: Four distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well-being were found for both supportive and less supportive typologies. CONCLUSIONS: A variety of family types were found, with implications for sensitive professional support.