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.

'Walk Buds': A walking intervention to increase physical activity, physical fitness, and emotional wellbeing, in 9-13 year old children with intellectual disabilities. Results of a clustered randomised feasibility trial.

BACKGROUND: Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability. METHOD: A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (n = 161 pupils aged 9-13 years) were randomised into either an intervention arm or an 'exercise as usual' arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected. RESULTS: The 'Walk Buds' intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%. CONCLUSION: A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed.

A scoping review of the evidence for the use of screening tools in people with intellectual disabilities with dysphagia.

BACKGROUND: Dysphagia can have serious health implications including choking and respiratory infection leading to poorer quality of life. People with intellectual disabilities are at higher risk of dysphagia related health complications and early death. Robust dysphagia screening tools are vital for this population. METHOD: A scoping review and appraisal of the evidence for dysphagia and feeding screening tools for use with people with intellectual disabilities was undertaken. RESULTS: Seven studies (using six screening tools) met the review inclusion criteria. Mostly studies were limited by no defined dysphagia criteria, no verification of tools with a gold reference standard (e.g., videofluoroscopic examination) and lack of participant diversity (small samples, narrow age range, severity of intellectual disability or limited settings). CONCLUSIONS: There is urgent need for development and rigorous appraisal of existing dysphagia screening tools to meet the needs of a wider range of people with intellectual disabilities (particularly mild-to-moderate severity) and in wider settings.

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England.

BACKGROUND: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs. METHOD: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent). RESULTS: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models. CONCLUSIONS: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.

Determining the need for a breast cancer awareness educational intervention for women with mild/moderate levels of intellectual disability: A qualitative descriptive study.

OBJECTIVE: Following a review of the existing body of literature, this study aimed to explore the need for a breast cancer awareness intervention specifically targeted at women with mild/moderate levels of intellectual disability (ID) and provide perspectives on the preferred processes and content underpinning an intervention. METHODS: A qualitative, descriptive design using semi-structured, individual (n = 5) and focus group (n = 5) interviews were used to engage with a non-probability, purposive sample of key stakeholders (n = 25) including women with mild/moderate levels of ID, caregivers and healthcare professionals. Data were analysed using qualitative content analysis. RESULTS: Findings highlighted that an educational intervention should focus on breast awareness as opposed to breast cancer awareness. Additionally, findings identified that a combined breast awareness and healthy living intervention could be effective. However, the intervention needs to have a multimodal, hands-on, person-centred approach to learning which is underpinned by theory. Furthermore, integrating the caregivers and healthcare professionals into the intervention is recommended. CONCLUSION: Findings from this study provide a foundation for developing and implementing a theoretically underpinned, multimodal, breast awareness and healthy living educational intervention for women with mild/moderate levels of ID.

Developing curricular-content and systems-related impact indicators for intellectual disability awareness training for acute hospital settings: A modified International Delphi Survey.

AIM: To identify, and reach consensus on, curricular-content and delivery methods, as well as ways to maximize the impact of intellectual disability awareness training programmes in acute hospital settings. BACKGROUND: With the continuing evidence of avoidable deaths and unwarranted variations in the quality of care to people with an intellectual disability in acute hospitals, it could be purported that current training provided to hospital staff appears to be making a minimal difference in the care provided to this population. DESIGN: A two-round modified Delphi survey was conducted between June 2020-January 2021. METHODS: International experts from primary healthcare and hospital settings, and intellectual disability health fields participated in the survey. Initial curricular-content items were developed from the literature, and based on the combined clinical and academic experience base of the authors. Items were evaluated in terms of agreement/consensus, importance and stability of responses. There were 57 expert responses in Round 1 and 45 in Round 2. RESULTS: The consensus was reached with regard to 55 of 65 curricular-content indicators relating to Aims, Design, Content and Delivery. Ten curricular-content indicators failed to be agreed on relating to the mode of training delivery. With regard to systems-related impact indicators, 28 out of 31 reached consensus. The expert panel identified and agreed on seven system barriers that could obstruct the successful implementation of the awareness training programmes in acute hospital settings. CONCLUSIONS: This is the first international Delphi survey to agree on curricular-content and identify systems-related facilitators for intellectual disability awareness training. Potential system barriers have been highlighted which could be addressed by systemic improvement. Implications for developing, and robustly testing the efficacy of, intellectual disability awareness training programmes are discussed, as are the implications for other cognitively impaired populations. IMPACT: In order to maximize the impact, investment in acute hospital staff education will need to be accompanied by wider changes to systems and structures concerning the governance of service provision for people with an intellectual disability.

Exploring the knowledge base of trauma and trauma informed care of staff working in community residential accommodation for adults with an intellectual disability.

BACKGROUND: Taking a trauma informed care approach has demonstrated positive outcomes for services for people in the general population. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, this study explores what residential staff know about trauma and trauma informed care. METHODS: Thirty-two staffs representing three staff groups: direct care staff; managers; and specialist practitioners, were interviewed using semi-structured interviews, which were analysed following a structured framework. FINDINGS: Each staff group held different perspectives in their knowledge of trauma and trauma informed care. Limitations were noted in staffs' knowledge of trauma, implementation of evidence-based supports, and access to specialist services for adults with an intellectual disability. All participants highlighted their training needs regarding trauma. CONCLUSION: Increased training on recognising and responding to trauma is needed among community staff supporting those with a trauma history if organisations are to move towards trauma informed care.

Barriers and facilitators of physical activity in adolescents with intellectual disabilities: An analysis informed by the COM-B model.

BACKGROUND: Adolescents with intellectual disabilities are insufficiently physically active. Where interventions have been developed and delivered, these have had limited effectiveness, and often lack a theoretical underpinning. AIM: Through application of the COM-B model, our aim is to explore the factors influencing adolescent physical activity within schools. METHODS: A qualitative methodology, using focus groups with students who have mild/moderate intellectual disabilities, their parents'/carers' and teachers'. The COM-B model provided the lens through which the data were collected and analysed. RESULTS: We identified of a range of individual, interpersonal, and environmental factors influencing physical activity, across all six COM-B constructs, within the context of the 'school-system'. CONCLUSION: This is the first study to use the COM-B model to explore school-based physical activity behaviour, for adolescents with intellectual disabilities. Identification of such physical activity behavioural determinants can support the development of effective and sustainable interventions.

Using a hospital passport from the perspective of adults with intellectual disabilities, family carers and health professionals: A qualitative study.

This article explores the experiences of the use of the Regional Health and Social Care Hospital Passport (Regional Hospital Passport) in Northern Ireland from the perspectives of adults with intellectual disabilities, family carers and health professionals. From semi-structured interviews three themes emerged: usefulness; facilitators; and barriers to the use of the Regional Hospital Passport. There were clear benefits of the Hospital Passport when used across hospital services and clinical practice settings such as dental and General Practices. There was participant agreement that communication and the person-centred care experiences were enhanced. Findings suggest that providers of health and social care services need to take greater responsibility and accountability for ensuring Regional Hospital Passports are promoted and used across all settings. There is a requirement to develop the wider use and uptake of hospital passports to support adults with intellectual disabilities, with potential for use with other patient groups.

Trauma experiences of people with an intellectual disability and their implications: A scoping review.

BACKGROUND: People with an intellectual disability are more vulnerable to psychological trauma compared with the general population. The aim of this scoping review was to identify the current status of the literature on trauma that is specific to the experiences of adults with an intellectual disability, living in community settings. METHODS: A scoping review was conducted using the Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19) framework. Forty-one international papers were reviewed spanning 2000-2020, and their quality assessed using the MMAT. FINDINGS: (1) Aggressive behaviours can be symptoms of trauma, (2) there are appropriate assessment tools for the impact of trauma, (3) evidence-based interventions for trauma may be effective, and (4) factors associated with disability can be experienced as traumatic. CONCLUSION: There is a growing body of literature highlighting assessment needs and potential interventions for people with an intellectual disability who have experienced psychological trauma. Further research is needed to develop trauma-informed pathways.

Challenges to conducting randomised controlled trials with adults with intellectual disabilities: Experiences of international experts.

BACKGROUND: Globally, conducting randomised controlled trials can be a complex endeavour. The complexity increases when including participants with cognitive or intellectual disabilities. A fuller understanding of the barriers and challenges that can be expected in such trials may help researchers to make their trials more inclusive for people with disabilities. METHOD: Semi-structured interviews were conducted with twelve international trial experts. RESULTS: Eight themes emerged relating to challenges linked to: 1) participant co-morbidities, 2) participant ability levels, 3) ethics and consent, 4) the RCT methodology, 5) gatekeeping, 6) staff turnover, 7) lack of technical understanding and 8) attitudes and perceptions. CONCLUSION: Conducting trials with cognitively disabled participants can pose unique challenges although many can be overcome with 'reasonable adjustments'. Challenges that are harder to overcome are attitudes and perceptions that people (professional staff, funding bodies, carers or fellow researchers) hold towards the utility of conducting trials with cognitively disabled populations.

An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a 'context, mechanism and outcome' evaluation.

BACKGROUND: Obesity is higher in people with intellectual disabilities. AIMS: There are two aims of this explorative paper. Firstly, using a realist lens, to go beyond 'what works' and examine the 'context, mechanisms and outcomes' (CMO) of lifestyle/obesity programmes for this population. Second, using a logic model framework to inform how these programmes could be implemented within practice. METHOD: We explored six-review papers and the individual lifestyle/obesity programmes that these papers reviewed using the CMO framework. RESULTS: There were few theoretically underpinned, multi-component programmes that were effective in the short to long-term and many failed to explore the 'context and mechanisms'. We developed a logic model and engaged in two co-production workshops to refine this model. DISCUSSION: Using a realist approach, programmes need to be underpinned by both individual and systems change theories, be multi-component, have a closer understanding of the interplay of the 'context and mechanisms', and co-designed using a logic model framework.

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.

AIM: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. METHOD: The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. RESULTS: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. CONCLUSIONS: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

Defining breast cancer awareness and identifying barriers to breast cancer awareness for women with an intellectual disability: A review of the literature.

INTRODUCTION: Incidence rates for developing breast cancer are similar for women regardless of intellectual ability. However, women with an intellectual disability present with advanced breast cancers, which often have a poor prognosis. METHOD: A structured narrative review of the literature was performed to explore the concepts of breast awareness and breast cancer awareness and subsequently, identify barriers to breast cancer awareness encountered by women with an intellectual disability. RESULTS: A total of 22 studies involving people with varying levels of intellectual disability informed this review. The barriers to breast cancer awareness encountered by women with an intellectual disability include: lack of their understanding, the role of the carer and literacy issues. CONCLUSION: Identifying the barriers to breast cancer awareness for women with an intellectual disability will help to facilitate breast cancer awareness which has the potential to result in better long-term outcomes through an early diagnosis of breast cancer.

Using a Delphi survey to gain an international consensus on the challenges of conducting trials with adults with intellectual disabilities.

BACKGROUND/AIMS: People with intellectual disability experience higher rates of multi-morbidity and health inequalities, they are frequently prescribed medications and more likely to have an avoidable or premature death. There is a recognised lack of randomised controlled trials, and subsequently a lack of evidence base, for many of the interventions and treatments provided to people with intellectual disabilities. Very few disability-specific trials are conducted, and people with intellectual, and other cognitive, disabilities are routinely excluded from mainstream trials. There is an urgent need to facilitate more disability-specific trials or to encourage mainstream trialists to include people with disabilities in their studies. Obtaining a thorough understanding of the challenges inherent in these trials, and sharing this knowledge within the research community, may contribute significantly towards addressing this need. The aim of this study was to explore the practical and methodological challenges to conducting trials with adults with intellectual disabilities and to reach a consensus regarding which are the most important challenges for researchers for inclusion in a resource toolkit. METHODS: A three-round modified Delphi survey was conducted with a panel of international trials researchers within the intellectual disability field. Items were assessed in terms of the consensus level and stability of responses. RESULTS: A total of 64 challenges and barriers were agreed upon, across all aspects of the trial pathway, from planning through to reporting. Some challenges and barriers had been noted in the literature previously, but many previously uncited barriers (both systemic and attitudinal) were identified. CONCLUSION: This is the first international survey exploring the experiences of researchers conducting randomised controlled trials with adults with intellectual disabilities. Many of the barriers and challenges reported can be overcome with creativity and some additional resources. Other challenges, including attitudes towards conducting trials with disabled populations, maybe harder to overcome. These findings have implications for conducting trials with other populations with cognitive or communication difficulties. Implications for disability researchers, funding bodies and ethical review panels are discussed.

Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff.

BACKGROUND: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. METHOD: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. RESULTS: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. CONCLUSION: Death affects many people with intellectual disability. Staff require training and support in communicating death.

The lived experience of people with intellectual disabilities in post-secondary or higher education.

The transformational role education plays in the lives of people with intellectual disabilities has not been fully examined. The purpose of this study was to explore and investigate the meanings people with intellectual disabilities construct of their experiences in post-secondary and higher education. Heideggerian hermeneutic phenomenology was the qualitative methodology adopted for the study. Individual interviews were conducted with 27 people with intellectual disabilities and analysed in stages. These stages included the creation of I-Poems offering a unique opportunity for individual participant voices to be heard. Three core themes emerged to describe living an authentic life: learning (with the emphasis on increased skills, independence and opportunities); relationships (in particular, the importance of friendships), and perceptions including the existing realities of life for those with intellectual disabilities. The findings advance previous work highlighting the link between living a more authentic life and how education transforms how people with intellectual disabilities view themselves.

Access to health care for older people with intellectual disability: a modelling study to explore the cost-effectiveness of health checks.

BACKGROUND: Whilst people with intellectual disability grow older, evidence has emerged internationally about the largely unmet health needs of this specific ageing population. Health checks have been implemented in some countries to address those health inequalities. Evaluations have focused on measuring process outcomes due to challenges measuring quality of life outcomes. In addition, the cost-effectiveness is currently unknown. As part of a national guideline for this population we sought to explore the likely cost-effectiveness of annual health checks in England. METHODS: Decision-analytical Markov modelling was used to estimate the cost-effectiveness of a strategy, in which health checks were provided for older people with intellectual disability, when compared with standard care. The approach we took was explorative. Individual models were developed for a selected range of health conditions, which had an expected high economic impact and for which sufficient evidence was available for the modelling. In each of the models, hypothetical cohorts were followed from 40 yrs. of age until death. The outcome measure was cost per quality-adjusted life-year (QALY) gained. Incremental cost-effectiveness ratios (ICER) were calculated. Costs were assessed from a health provider perspective and expressed in 2016 GBP. Costs and QALYs were discounted at 3.5%. We carried out probabilistic sensitivity analysis. Data from published studies as well as expert opinion informed parameters. RESULTS: Health checks led to a mean QALY gain of 0.074 (95% CI 0.072 to 0.119); and mean incremental costs of £4787 (CI 95% 4773 to 5017). For a threshold of £30,000 per QALY, health checks were not cost-effective (mean ICER £85,632; 95% CI 82,762 to 131,944). Costs of intervention needed to reduce from £258 to under £100 per year in order for health checks to be cost-effective. CONCLUSION: Whilst findings need to be considered with caution as the model was exploratory in that it was based on assumptions to overcome evidence gaps, they suggest that the way health systems deliver care for vulnerable populations might need to be re-examined. The work was carried out as part of a national guideline and informed recommendations about system changes to achieve more equal health care provisions.

A survey of nursing and multidisciplinary team members' perspectives on the perceived contribution of intellectual disability clinical nurse specialists.

AIM AND OBJECTIVES: To explore multidisciplinary team members' perspectives of clinical nurse specialists in intellectual disability nursing contribution in Ireland. BACKGROUND: While clinical nurse specialist roles have advanced over time, they are viewed as multifaceted and complex roles creating confusion. This confusion is reinforced by the absence of studies on multidisciplinary team members' perspectives on the activities of clinical nurse specialists. DESIGN: A cross-sectional study of multidisciplinary team members (n = 262). The survey instrument was developed based on the literature and the result of a previous qualitative study and survey of intellectual disability clinical nurse specialists. METHODS: SPSS was used for data analyses and descriptive and inferential statistics. The STROBE checklist for cross-sectional studies was used for reporting, and both a university and service providers granted ethical approval. FINDINGS: This study highlights that multidisciplinary team members identify the contribution and support that intellectual disability clinical nurse specialists provide across a range of practice areas. Clinical nurse specialists support the care process through supporting clients, staffs, families, organisations, communities and other agencies. CONCLUSIONS: Overall, the study reports and acknowledges the significance and contribution of intellectual disability clinical nurse specialists, across a range of practice areas and the support they provide for all stakeholders within the care process. RELEVANCE TO CLINICAL PRACTICE: Clinical nurse specialists are central to the nursing profession as a lead clinical role in practice and play a key role within the multidisciplinary team. Highlighting the work of the clinical nurse specialist creates greater clarity and less role ambiguity/confusion.

A mixed-methods, randomized controlled feasibility trial of Eye Movement Desensitization and Reprocessing (EMDR) plus Standard Care (SC) versus SC alone for DSM-5 Posttraumatic Stress Disorder (PTSD) in adults with intellectual disabilities.

OBJECTIVE: To report the results of the first randomized feasibility trial of Eye Movement Desensitization and Reprocessing (EMDR) plus Standard Care (SC) versus SC alone for DSM-5 posttraumatic stress disorder (PTSD) in adults with intellectual disabilities. METHOD: A total of 29 participants were randomized to either to EMDR + SC (n = 15) or SC (n = 14). Participants completed measures on traumatic stress (PCL-C) and comorbid distress at baseline, 1 week post-treatment and 3-month follow-up. RESULTS: In the EMDR + SC group, 9 (60%) participants at post-treatment and 7 (47%) participants at 3-month follow-up were diagnosis free. In SC, 4 (27%) at post-treatment and follow-up were diagnosis free. At post-treatment, three participants (20%) dropped out from the EMDR + SC group, and 1 (7%) dropped out from the SC group. CONCLUSIONS: It is feasible, acceptable and potentially effective to deliver EMDR in this population group.