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.

Recruitment settings, delivery contexts, intervention techniques and outcomes of health promotion programmes for young adults with intellectual and developmental disabilities: A systematic review.

BACKGROUND: People with intellectual and developmental disabilities (IDD) are at risk of developing long term health conditions, and a preventative health agenda research is emerging. However, little is known about the recruitment settings, delivery contexts, intervention techniques and outcomes of health promotion programmes for this population. Therefore, the aim of this review was to synthesize and evaluate these characteristics. METHOD: A systematic review of studies identified from multiple databases on healthy lifestyle interventions for adolescents and young people with IDD was conducted. Data were synthesized and evaluated using a logic model. Quality of rigour was also assessed. RESULTS: Sixteen geographically diverse studies were selected and evaluated. Participants were most commonly recruited from schools, with interventions typically taking place in a gym setting and involving physical activity training. CONCLUSIONS: This review indicates that physical activity and dietary interventions in people with IDD may lead to lifestyle changes, however more robust evidence is required. Educational settings are conducive, with settings beyond schools requiring further consideration.

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.

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.

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.