Randomised controlled feasibility study protocol of the Carers-ID online intervention to support the mental health of family carers of people with intellectual disabilities.

BACKGROUND: Family carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities. METHODS: Family carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. DISCUSSION: The Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted. TRIAL REGISTRATION: ClinicalTrials.gov : NCT05737823.

Social skills interventions for Thai adolescents with Autism Spectrum Disorder (ASD): a qualitative study of the perceptions and experiences of Thai adolescents, their caregivers and healthcare professionals.

BACKGROUND: Social skills interventions (SSIs) are effective for enhancing social skills and decreasing mental health problems in adolescents with autism spectrum disorder (ASD). However, these interventions have been designed and their effectiveness has been established in Western countries. Lack of culturally acceptable SSIs for Asian nations is a possible barrier to implementing effective and tailored interventions that address the unique requirements of ASD individuals across countries and cultures. This study aims to explore the needs and preferences of adolescents with ASD, their caregivers, and healthcare professionals (HPs) in Thailand regarding the components, delivery formats, and cultural adaptation required for an outpatient-based social skills intervention. METHODS: Qualitative data was collected via three focus groups of HPs (n = 20) and 24 paired interviews with adolescents with ASD and their caregivers from a child psychiatric hospital in Thailand. Purposive sampling was employed, and thematic analysis was used to analyse the data. RESULTS: Nine themes emerged from the data generated by HPs, and seven from adolescents with ASD and their caregivers. SSIs for Thai adolescents with ASD and their caregivers should emphasise specific social skills training and assess the abilities of adolescents as required. Incorporating various learning strategies is important. Parental involvement is essential and provides knowledge of an adolescent's symptoms and coaching skills, which are best used to support their adolescents. Cultural considerations include the need for social knowledge of Thai culture, promoting assertiveness and praising parents' abilities, implementing a programme in time to not interrupt academic achievement, and renaming a programme from social skills intervention to social communication intervention. Barriers to implementing a programme included HPs' need for specialised training and education and decreased workload. Also, the caregivers' and adolescents' stigma reduced attendance in a programme. Increased extra compensation and relocation days off are provided as policy support for staff who deliver the intervention. CONCLUSION: The results suggest that SSIs for Thai adolescents with ASD should be tailored to meet the needs for specific knowledge, skills, and parental collaboration as coaches for their adolescents. Additionally, it should incorporate Thai culture. It is necessary to consider staff knowledge, workload, and stigma in order to reduce barriers to implementation in practice.

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.

Rates, causes and predictors of all-cause and avoidable mortality in 163 686 children and young people with and without intellectual disabilities: a record linkage national cohort study.

OBJECTIVES: To investigate mortality rates and associated factors, and avoidable mortality in children/young people with intellectual disabilities. DESIGN: Retrospective cohort; individual record-linked data between Scotland's 2011 Census and 9.5 years of National Records for Scotland death certification data. SETTING: General community. PARTICIPANTS: Children and young people with intellectual disabilities living in Scotland aged 5-24 years, and an age-matched comparison group. MAIN OUTCOME MEASURES: Deaths up to 2020: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs/sex-SMRs; and avoidable deaths. RESULTS: Death occurred in 260/7247 (3.6%) children/young people with intellectual disabilities (crude mortality rate=388/100 000 person-years) and 528/156 439 (0.3%) children/young people without intellectual disabilities (crude mortality rate=36/100 000 person-years). SMRs for children/young people with versus those without intellectual disabilities were 10.7 for all causes (95% CI 9.47 to 12.1), 5.17 for avoidable death (95% CI 4.19 to 6.37), 2.3 for preventable death (95% CI 1.6 to 3.2) and 16.1 for treatable death (95% CI 12.5 to 20.8). SMRs were highest for children (27.4, 95% CI 20.6 to 36.3) aged 5-9 years, and lowest for young people (6.6, 95% CI 5.1 to 8.6) aged 20-24 years. SMRs were higher in more affluent neighbourhoods. Crude mortality incidences were higher for the children/young people with intellectual disabilities for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. The most common underlying avoidable causes of mortality for children/young people with intellectual disabilities were epilepsy, aspiration/reflux/choking and respiratory infection, and for children/young people without intellectual disabilities were suicide, accidental drug-related deaths and car accidents. CONCLUSION: Children with intellectual disabilities had significantly higher rates of all-cause, avoidable, treatable and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5-9 years. Interventions to improve healthcare to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and coordinated multidisciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods.

The transition from child to adult health services for young adults with intellectual disabilities: An evaluation of a pilot of an online learning resource for Registered Nurses.

AIM: This study formed the third phase of a national study on the experience of transition from child to adult health services for young adults with intellectual disabilities. The aim of this phase was to evaluate the accessibility and acceptability of an on-line learning resource for Registered Nurses. BACKGROUND: The population of young adults with intellectual disabilities and complex needs is increasing. Consequently, more will move from child to adult healthcare, with evidence highlighting that for some their experiences of the transition process is poor. The main study provided contemporary evidence to raise the awareness of Registered Nurses of the needs of young adults with intellectual disabilities and their role in enabling an effective transition from child to adult services. METHODS: The online learning resource was developed and piloted with Registered Nurses involved in the transition from child to adult health services for young adults with intellectual disabilities and complex needs. Data collection involved an online survey and semi-structured interviews. RESULTS: Twelve Registered Nurses from 2 Scottish NHS Boards completed the questionnaire and 3 participated in a follow-up interview. The findings suggest that the mode of on-line delivery and most of the content of the learning resource were both acceptable and accessible to Registered Nurses across a range of areas of nursing practice. The learning resource was further adapted in response to the participant data. CONCLUSION: This on-line learning resources offers the potential for Registered Nurses, and potentially other healthcare professionals to undertake evidence-based, structured further education regarding the effective transitions for young adults with intellectual disabilities and their families. TWEETABLE ABSTRACT: Registered Nurses have key contributions to enable the transition from child to adult healthcare for young adults with intellectual disabilities.

Respiratory-associated deaths in people with intellectual disabilities: a systematic review and meta-analysis.

OBJECTIVE: To review and synthesise evidence on rates of respiratory-associated deaths and associated risk factors in the intellectual disability population. DESIGN: Systematic review and meta-analysis. DATA SOURCES: Embase, CINAHL, ISI Web of Science (all databases including Medline) and PsychINFO were searched for studies published between 1st January 1985 and 27th April 2020 and examined study and outcome quality. Reference lists and Google Scholar were also hand searched. RESULTS: We identified 2295 studies, 17 were included in the narrative synthesis and 10 studies (11 cohorts) in the meta-analysis. Data from 90 302 people with intellectual disabilities and 13 808 deaths from all causes in people with intellectual disabilities were extracted. Significantly higher rates of respiratory-associated deaths were found among people with intellectual disabilities (standardised mortality ratio(SMR): 10.86 (95% CI: 5.32 to 22.18, p<0.001) compared with those in the general population, lesser rates for adults with ID (SMR: 6.53 (95% CI: 4.29 to 9.96, p<0.001); and relatively high rates from pneumonia 26.65 (95% CI: 5.63 to 126.24, p<0.001). The overall statistical heterogeneity was I2=99.0%. CONCLUSION: Premature deaths due to respiratory disorders are potentially avoidable with improved public health initiatives and equitable access to quality healthcare. Further research should focus on developing prognostic guidance and validated tools for clinical practice to mitigate risks of respiratory-associated deaths. PROSPERO REGISTRATION NUMBER: CRD42020180479.

Risk factors for falls among adults with intellectual disabilities: A narrative review.

BACKGROUND: The prevalence of falls involving people with intellectual disabilities (ID) is high in comparison with the general population. There has been little evidence to date on the contributing risk factors. The objective of this review was to identify risk factors for people with intellectual disabilities. METHOD: Literature searches were conducted using electronic databases to explore evidence on the subject, and narrative synthesis was employed to analyse the results. RESULTS: Seven risk factors were identified: decreasing physical ability, epilepsy, paretic conditions, impulsiveness, previous falls, incontinence and non-use of assistive equipment. Thematic analysis identified factors across the four concepts: the person, the situation, ongoing and protective factors. CONCLUSION: Factors for falls involving people with intellectual disabilities are dynamic and multifactorial. Some are specific to the population; however, further research is required to develop the understanding of the possible reasons. The findings have implications across policy, education, practice and research.

The Design, Content and Delivery of Relationship and Sexuality Education Programmes for People with Intellectual Disabilities: A Systematic Review of the International Evidence.

There is growing empirical evidence regarding the relationship and sexuality experiences and needs of children, young people and adults with intellectual disabilities. A total of twelve papers met the inclusion criteria regarding relationship and sexuality education (RSE) programmes specific to the needs of this population. The preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines were followed and quality appraisal undertaken. The four themes identified were principles informing RSE programme development, design and content of RSE programmes, delivery of RSE programmes and evaluation of RSE programmes. The discussion presents areas that need to be addressed to ensure that people with intellectual disabilities, their families, carers and professionals are fully involved in the design and delivery of RSE programmes. Further research is required to identify the impact of the programmes and the sustained outcomes achieved. Recommendations are made regarding the activities required to enable the development of evidence-based and person-centred approaches to relationship and sexuality programmes.

The experience of type 2 diabetes self-management in adults with intellectual disabilities and their caregivers: A review of the literature using meta-aggregative synthesis and an appraisal of rigor.

People with intellectual disabilities (ID) experience significant barriers to diabetes self-management (DSM), yet there remains a paucity of research within this population. An overview of the literature on people with ID and their caregivers' experiences of living with and self-managing type 2 diabetes is provided. Meta-aggregative methods were adopted to synthesize results, and an appraisal was reported of rigor. A total of eight studies met the inclusion criteria and four themes were extracted: (i) "Frustration over lifestyle adjustments," (ii) "Limited understanding and inadequate educational resources," (iii) "Limited training and knowledge in staff," and (iv) "Potential for effective DSM with appropriate support." Current support is inadequate to meet the needs of people with ID and their caregivers self-managing diabetes. Structured education to improve health literacy and diabetes knowledge in people with ID is required, together with training for caregivers which leads to a culture of nurturing autonomy.

Trauma-informed care: A qualitative study exploring the views and experiences of professionals in specialist health services for adults with intellectual disabilities.

BACKGROUND: Trauma and its sequelae is recognised as a major morbidity factor in people with intellectual disabilities, however, a lack of inquiry into how health care professionals address trauma in this adult population exists. AIMS: To explore specialist intellectual disability practitioners perspectives on current health provision and developments to address trauma. METHODS: Twenty-five qualitative interviews were conducted with practitioners across 6 health service areas in the UK. Data were analysed using thematic content analysis. FINDINGS: Seven central themes emerged: (a) unmasked trauma; (b) trauma informed care; (c) person-centred care and support; (d) multi-disciplinary working; (e) reasonable adjustments; (f) barriers to treatment and (g) awareness, training and education. CONCLUSION: Trauma-informed care and multi-disciplinary working are essential components for future service development. Advances in the evidence-base for effective psychological interventions for PTSD and training and education of health care staff are needed in order to improve service provision amongst this population.

Pilot feasibility study of the Walking Away from Diabetes programme for adults with intellectual disabilities in two further education colleges: Process evaluation findings.

BACKGROUND: People with intellectual disabilities remain at high risk of developing type 2 diabetes (T2D) due to lifestyle-associated risk factors. Educational programmes have been adapted for people with intellectual disabilities targeting ongoing T2D self-management. However, there are no adapted programmes which aim to prevent T2D through reducing risk factors. The present study initiates addressing this gap. METHODS: Further education (FE) colleges in Scotland were recruited for feasibility study using the Walking Away (WA) from Diabetes programme. Process evaluation assessed recruitment, retention, baseline physical activity levels, and acceptability and accessibility using focus groups. RESULTS: Ninety six percent of invited students agreed to participate. WA was positively received, and some short-term impact was described. Suggestions for further adaptations regarding materials, delivery and content were provided, including delivery embedded within FE college curriculum. CONCLUSIONS: Recruitment, retention and acceptability provide rationale for further research on T2D prevention in FE colleges.

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.

An evaluation of mainstream type 2 diabetes educational programmes in relation to the needs of people with intellectual disabilities: A systematic review of the literature.

BACKGROUND: Risk reduction and self-management programs for type 2 diabetes (T2D) are commonplace. However, little is known about their appropriateness for people with intellectual disabilities (ID). This review evaluates successful components and theoretical basis of interventions and preventions in relation to the needs of people with ID with or at risk of T2D. METHOD: Characteristics of 23 randomised controlled trialled T2D educational programs were systematically assessed alongside the needs of people with ID, and evaluated in terms of study design and theoretical application. RESULTS: Successful components of programs align to the needs of people with ID. Further adaptations are required to ensure accessibility of materials and social support to enable reflection on illness perceptions and self-efficacy, as underpinned by Self-regulation and Social-cognitive theories. CONCLUSIONS: Support is provided for further trials of self-management and preventative adaptations under development. Impact may be enhanced through preventions aimed at younger groups in educational settings.

An application of Bandura's 'Four Sources of Self-Efficacy' to the self-management of type 2 diabetes in people with intellectual disability: An inductive and deductive thematic analysis.

BACKGROUND: Little is known about the successful experiences and positive perceptions of people with intellectual disabilities (ID) self-managing Type 2 Diabetes (T2D). This study sought to address this gap using Bandura's (1977) 'Four Sources of Self-Efficacy' as a framework of enquiry. METHOD: Semi-structured interviews were conducted with 10 adults with ID. Interviews were recorded, transcribed verbatim and analysed using inductive and deductive thematic analysis RESULTS: Nine sub-themes were identified following analysis of the data: 1) Mastery through knowledge; 2) Mastery through tools and strategies; 3) Mastery through autonomy; 4) Influence of social setting; 5) Positive social comparisons; 6) Positive and negative self-statements; 7) Feedback from caregivers; 8) Adjustment experiences; 9) Symptom awareness. These were mapped onto Bandura's (1977) Four Sources of efficacy enhancement model and were consistent with its proposed mechanisms. CONCLUSION: The Four Sources model serves as a useful mode of enquiry for exploring people with ID's experiences and perceptions of self-managing diabetes. It also confirms the appropriateness of Self-efficacy as a potential intervention component for this population. However, additional support may be required for people with ID to reflect meaningfully on their experiences and thus have a sense of self-efficacy. WHAT THIS PAPER ADDS: This paper builds upon the limited existing literature on people with ID self-managing type 2 diabetes and provides a robust, qualitative account of the participants' experiences, whilst confirming some of the existing challenges, both for people with ID and their supporters. To self-manage with autonomy and overcome the difficulties of adjustment, further strategies such as training and education needs are highlighted. In addition, the meaning and relevance of the Self-efficacy construct is evaluated in the context of people with ID self-managing T2D. This provides useful information in terms of tailoring existing mainstream T2D interventions to meet the needs of people with ID, as such programs are commonly theoretically guided by Self-efficacy. Furthermore, this evaluation provides rationale for the exploration of people with IDs' Self-efficacy in relation to other chronic diseases, such as cardiovascular disease, cancer symptoms and gastrointestinal disorders.