Background Anxiety and challenging behaviour (CB) often occur simultaneously in people with intellectual disabilities (ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB.
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Aim Direct Support Professionals (DSPs) provide important lifestyle behaviour support for people with intellectual disabilities (ID). They can use behaviour change techniques (BCTs) to do this. We aimed to evaluate which BCTs are used for supporting healthy lifestyle behaviour of people with moderate to profound ID by DSPs. Method 18 DSPs were observed in their daily work with audio-visual recordings. The Coventry Aberdeen London Refined (CALO-RE-NL) taxonomy was used for coding BCTs. Differences in the characteristics of people with ID and DSPs in relation to the used BCTs were evaluated.Results Most of the coded BCTs were used by DSPs (33 BCTs out of 42), but they rely heavily on nine of them. DSPs used ‘feedback on performance’, ‘instructions on how to perform the behaviour’, and ‘doing together’ mostly. No statistical differences were found for the characteristics of people with ID or DSPs for the top nine used BCTs.Conclusion DSPs mostly rely on nine BCTs. Although no statistical differences were found, DSPs use more BCTs for people with more severe ID. DSPs who support people with severe or profound ID are more aware of demonstrating, setting graded tasks and encouraging people with ID to practice healthy lifestyle.
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BACKGROUND: There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs.METHOD: This study was part of the longitudinal 'Healthy Ageing and Intellectual Disability' study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival.RESULTS: Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001).CONCLUSION: The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.
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The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centered methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM. We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53). ageing, dementia, Dementia Care Mapping, intellectual disability, mixed-methods, personcentred care
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The purpose of this article is the presentation of a multidimensional guideline for the diagnosis of anxiety and anxiety-related behavior problems in people with intellectual disability (ID), with a substantial role for the nurse in this diagnostic process. DESIGN AND METHODS: The guideline is illustrated by a case report of a woman with ID with severe problems. FINDINGS: It appears that a multidimensional diagnostic approach involving multidisciplinary team efforts can result in a more accurate diagnosis and improved subsequent treatment. PRACTICE IMPLICATIONS: Nurses should be engaged in the diagnostic process because of their ability to make direct observations and to actively participate in carrying out all parts of the guideline.
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To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in healthcare organizations supporting people with Intellectual Disabilities (ID).
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Individuals with intellectual disability (ID) need support from direct support professionals (DSPs) to engage in a healthy lifestyle. However, literature shows DSPs feel insufficiently equipped to support a healthy lifestyle. Therefore, the aim of this study is to develop a theory-based program for DSPs to support physical activity and healthy nutrition for people with moderate to profound levels of ID, and to design its evaluation. The Intervention Mapping Protocol (IM) was followed to develop a theory-based program for DSPs. The program evaluation consists of process and feasibility evaluations. This study provided a theory-based program consisting of a training and education section with online and face-to-face components to support DSPs in promoting health for people with ID.
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BACKGROUND: People with intellectual disabilities (ID) experience more health problems and have different lifestyle change needs, compared with the general population.AIMS: To improve lifestyle change interventions for people with ID, this review examined how behaviour change techniques (BCTs) were applied in interventions aimed at physical activity, nutrition or physical activity and nutrition, and described their quality.METHODS AND PROCEDURES: After a broad search and detailed selection process, 45 studies were included in the review. For coding BCTs, the CALO-RE taxonomy was used. To assess the quality of the interventions, the Physiotherapy Evidence Database (PEDro) scale was used. Extracted data included general study characteristics and intervention characteristics.OUTCOMES AND RESULTS: All interventions used BCTs, although theory-driven BCTs were rarely used. The most frequently used BCTs were 'provide information on consequences of behaviour in general' and 'plan social support/social change'. Most studies were of low quality and a theoretical framework was often missing.CONCLUSION AND IMPLICATIONS: This review shows that BCTs are frequently applied in lifestyle change interventions. To further improve effectiveness, these lifestyle change interventions could benefit from using a theoretical framework, a detailed intervention description and an appropriate and reliable intervention design which is tailored to people with ID.
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Abstract Aim: This study protocol aims to examine the effectiveness and preconditions of a self-management program—named REducing Delay through edUcation on eXacerbations (REDUX)—in China. Background: The high disease burden in people with chronic lung disease is mainly due to exacerbations. There is a need for effective exacerbation-management interventions. A nurse-led program, REDUX, helped patients self-manage exacerbations. Design: A single-arm pre-post study. Methods: Fifty-four patients and 24 healthcare professionals (HCPs) in Chinese primary care will be included. The core element of the program is a personalized action plan. HCPs will receive training in using the action plan to help patients manage exacerbations. The intervention will start when a patient is referred to the nurse for a post-exacerbation consultation and ends when the patient presents for the second post-exacerbation consultation. During the first post-exacerbation consultation, the patient and nurse will create the action plan. The primary outcomes in patients will include the delays between the onset of exacerbation and recognition, between exacerbation recognition and action, between exacerbation recognition and consultation with a doctor, and when the patients feel better after receiving medical help from HCPs. The secondary outcomes will include preconditions of the program. The ethics approval was obtained in September 2021. Discussion: This study will discuss a culturally adapted nurse-led self-management intervention for people with chronic lung disease in China. The intervention could help Chinese HCPs provide efficient care and reduce their workload. Furthermore, it will inform future research on tailoring nurse-led self-management interventions in different contexts. Impact: The study will contribute to the evidence on the effectiveness and preconditions of REDUX in China. If effective, the result will assist the nursing of people with chronic lung disease. Trial registration: Registered in the Chinese clinical trial registry (ID: 2100051782).
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Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustifiably exclude individuals with ID from IC treatment. Our objective was to compare the classification of individuals with ID into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classified according to the CFS and the ID-frailty index.Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classified as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classified as at least severely frail (CFS score 7-9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classified by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.
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