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.

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.

'Different things at different times': Wellbeing strategies and processes identified by parents of children who have an intellectual disability or who are autistic, or both.

BACKGROUND: Most parents of children with an intellectual disability or who are autistic identify positives in their family life and their own wellbeing, in addition to reported mental health challenges. Several models and interventions have been developed in relation to parent carer wellbeing. Few studies have asked parent carers how they support their own wellbeing. METHOD: Adopting an interpretive phenomenological approach this study utilised semi-structured interviews. Seventeen parent carers were asked what supported their emotional wellbeing. Template Analysis was applied to develop themes. RESULTS: All participants identified factors that supported their wellbeing. Themes included strategies that countered stress (time for themselves, relaxation, 'parking' difficulties) and broader wellbeing strategies (finding meaningful life direction, greater understanding of child). An ongoing process of supporting wellbeing by 'Reorienting and Finding Balance' appeared central. CONCLUSIONS: Self-identified, multi-dimensional strategies benefit parents' emotional wellbeing and should be considered in the context of support provided to families.

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.

New ways of seeing and being: Evaluating an acceptance and mindfulness group for parents of young people with intellectual disabilities who display challenging behaviour.

The current study presents findings from an acceptance and commitment therapy-based intervention for family carers of children who have an intellectual/developmental disability and display high levels of challenging behaviour. The parent well-being workshops consist of two workshops incorporating acceptance and mindfulness-based exercises and discussions. Semi-structured interviews were conducted with five family carers following attendance of the workshops. Participants found the workshops useful and reported that they were better able to cope with stress. They also described how they had incorporated mindfulness into their daily lives and how their practice had had positive effects on their own well-being and on those around them (e.g. their child). Implications of the findings are discussed with emphasis on how the workshops can be included within a positive behaviour support framework. Future directions include a more robust quantitative evaluation, inclusion of follow-up sessions and the application of the workshops with other client groups and in other delivery formats.

Staff attitudes towards sexuality in relation to gender of people with intellectual disability: a qualitative study.

BACKGROUND: Research has found staff attitudes regarding the sexuality of people with intellectual disability (ID) to be negative but influenced by several factors. The current study aimed to examine whether gender of people with ID affects such attitudes. METHOD: Semistructured interviews were completed with 10 staff members and analysed using thematic analysis. RESULTS: Results indicated 3 themes: Women are perceived as sexually innocent, men as more sexually motivated, and motivations for sexual relationships are perceived to differ between men and women with ID. CONCLUSION: The study indicates unfavourable attitudes towards sexuality in individuals with ID that correlate with traditional, restricted gender stereotypes. The identification of these themes highlights the importance of considering gender when supporting the sexuality of people with ID.

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.

Senior manager decision-making and interactions with frontline staff in intellectual disability organisations: A Delphi study.

Very little is known of the activities of the most senior managers in organisations providing social care in the community to people with intellectual disabilities. Yet the importance of the focus and activities of senior managers in directing and supporting staff practice and staff experiences is likely to be central to an organisation's functioning and support provided for staff and service users. This study employed Delphi methodology with a panel of 11 senior managers, mostly chief executives, managing small to very large organisations providing support for people with intellectual disabilities, in the UK. Answering three rounds of questions, senior managers described their face-to-face and non-face-to-face contacts with staff and decision-making. Narrative data were subject to quantitative and thematic analysis. In the last round, themes were subject to quantitative analysis. Most contacts between senior managers and staff were in formal structured contexts and all managers used social media to promote the organisations' ambitions regarding good practice. The panel focused upon accessing and understanding the informal aspects of their organisations and staff factors. Decisions were both short-term reactive and long-term strategic and an effort to link these was felt to improve organisational functioning. A framework for understanding senior managers' activities emerged showing two sources of demands and opportunity, extra-organisational focused upon meeting legal and regulatory demands and intra-organisational focused upon understanding and influencing informal staff practices/experiences and cultures within their organisations.

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.

Interventions for mental health problems in children and adults with severe intellectual disabilities: a systematic review.

OBJECTIVE: Mental health problems are more prevalent in people with than without intellectual disabilities, yet treatment options have received little attention. The aim of this study was to identify and evaluate the effectiveness of pharmacological and psychological interventions in the treatment of mental health problems in children and adults with severe and profound intellectual disabilities, given their difficulties in accessing standard mental health interventions, particularly talking therapies, and difficulties reporting drug side effects. DESIGN: A systematic review using electronic searches of PsycINFO, PsycTESTS, EMBASE, MEDLINE, CINAHL, ERIC, ASSIA, Science Citation Index, Social Science Citation Index and CENTRAL was conducted to identify eligible intervention studies. Study selection, data extraction and quality appraisal were performed by two independent reviewers. PARTICIPANTS: Study samples included at least 70% children and/or adults with severe or profound intellectual disabilities or reported the outcomes of this subpopulation separate from participants with other levels of intellectual disabilities. INTERVENTIONS: Eligible intervention studies evaluated a psychological or pharmacological intervention using a control condition or pre-post design. OUTCOMES: Symptom severity, frequency or other quantitative dimension (e.g., impact), as assessed with standardised measures of mental health problems. RESULTS: We retrieved 41 232 records, reviewed 573 full-text articles and identified five studies eligible for inclusion: three studies evaluating pharmacological interventions, and two studies evaluating psychological interventions. Study designs ranged from double-blind placebo controlled crossover trials to single-case experimental reversal designs. Quality appraisals of this very limited literature base revealed good experimental control, poor reporting standards and a lack of follow-up data. CONCLUSIONS: Mental ill health requires vigorous treatment, yet the current evidence base is too limited to identify with precision effective treatments specifically for children or adults with severe and profound intellectual disabilities. Clinicians therefore must work on the basis of general population evidence, while researchers work to generate more precise evidence for people with severe and profound intellectual disabilities. PROSPERO REGISTRATION NUMBER: CRD 42015024469.

Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: A systematic review.

Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n=41,232) and full-text articles (n=573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study - indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further.

Rates of breastfeeding and exposure to socio-economic adversity amongst children with intellectual disability.

Children with intellectual disability are at increased risk of experiencing poor health relative to their typically developing peers. Previous research indicates that exposure to socio-economic disadvantage contributes towards this disparity but that additional factors (including parenting practices) may be involved in mediating/moderating pathways. This study examined duration of breastfeeding amongst children with and without intellectual disability by a secondary analysis of data from the UK Millennium Cohort Study. Children with intellectual disability were significantly less likely to have been ever breastfed; breastfed exclusively or at all at 3 months or breastfed at all at 6 months relative to children without intellectual disability. None of these differences remained significant when other psycho-social risk factors for reduced breastfeeding were controlled for. The study adds to both the sparse literature on breastfeeding practices amongst families of children with intellectual disability and research demonstrating relationships between socio-economic disadvantage and wellbeing for children with intellectual disability.

Assessing the implicit beliefs of sexual offenders using the implicit relational assessment procedure: a first study.

Researchers have proposed that the cognitive distortions of sexual offenders are underpinned by a number of implicit cognitive processes termed implicit theories. Until recently, however, the implicit theory hypothesis has received little empirical support due to broader limitations with standard forensic assessment procedures. The current research aimed to determine whether a new assessment methodology, the Implicit Relational Assessment Procedure (IRAP), could provide further evidence for Ward and Keenan's (1999) children as sexual beings implicit theory. The results indicated that the IRAP was significantly more effective at identifying core implicit differences between sexual offenders against children and nonoffenders than a cognitive distortion questionnaire. Furthermore, although both groups demonstrated an overall response bias towards adults as sexual and children as nonsexual, this bias was significantly impaired in the sexual offender group. The findings are discussed in relation to previous implicit theory research and recommendations for the development of implicit methodologies are made.

The Relationship between Intellectual Functioning and Relational Perspective-Taking

Several studies have employed an RFT-based test protocol as an assessment of perspective-taking with both typical and atypical samples of adults and children. In addition, other RFT protocols have found significant correlations between competencies on specific relations and outcomes on standardised IQ measures. However, there is no research to date that has examined correlations between relational perspective-taking and IQ. In the current study, 24 adults with varying levels of intellectual disability were exposed to standard measures of language ability and IQ, as well as an RFT-based test protocol for perspective-taking. In line with previous evidence, the results indicated significant differences across performances on different aspects of the perspective-taking protocol. Furthermore, the data indicated that perspective-taking correlated with verbal ability, full-scale IQ and performance IQ. These findings provide further evidence of the utility of the RFT-based protocol of deictic frames and highlight the role of intellectual functioning in perspective-taking

Varios estudios han empleado un protocolo conductual basado en la RFT para la eva- luación de la toma de perspectiva con adultos y niños. Además, otros protocolos han encontrado correlaciones significativas entre competencias en relaciones específicas y resultados en medidas estandarizadas del CI. Sin embargo, hasta la fecha no hay estudios que examinen las correlaciones entre toma de perspectiva relacional y CI. En el presente estudio 24 adultos con diferentes niveles de discapacidad intelectual fueron expuestos a medidas estándar de habilidad en lenguaje y CI, así como a un protocolo basado en la RFT para la evaluación de la toma de perspectiva. En línea con la evidencia previa, los resultados indicaron diferencias significativas en las ejecuciones en diferentes aspectos del protocolo de toma de perspectiva. Además, los datos indicaron que la toma de perspectiva correlacionó con habilidad verbal y CI. Estos hallazgos apuntan al papel que tiene el funcionamiento intelectual en el lenguaje conductual y proporcionan nueva evidencia de la utilidad del protocolo de marcos deícticos basado en la RTF y aportan datos sobre el papel del funcionamiento intelectual en la toma de perspectiva (AU)