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3Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
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Background: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. Method: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. Results: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. Implications: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.
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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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Children with intellectual disabilities experience unique developmental, social, and environmental challenges that intersect with adverse childhood experiences (ACEs) and positive childhood experiences (PCEs), shaping their psychosocial outcomes. While prior research has mainly examined single adversities or protective elements, the frameworks of ACEs and PCEs provide a broader understanding of their cumulative and interactive effects. However, these constructs remain underexplored in children with intellectual disabilities. This scoping review maps the range, conceptualization, and impact of ACEs, PCEs, and related concepts on psychosocial outcomes. Following the Joanna Briggs Institute (JBI) methodology, a search of PsycInfo, MEDLINE, CINAHL, Web of Science, and Google Scholar identified studies until October 2024. Two reviewers screened and extracted data using standardized criteria. Findings reveal variability in how ACEs and PCEs are defined and measured. ACE exposure, particularly the cumulative impact of multiple ACEs (polyvictimization), links to adverse psychosocial outcomes, including emotional (e.g., anxiety, depression, Post-Traumatic Stress Disorder), behavioral (e.g., aggression, conduct problems), and developmental (e.g., social and adaptive skill deficits) difficulties. PCEs—such as positive parent–child relationships, teacher–student support, and peer acceptance—mitigate risks, though impact varies by context. Intellectual disabilities severity and socioeconomic adversity shape associations. Further research is needed to inform the adaptation of ACE–PCE frameworks for children with intellectual disabilities.
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If being physically fit is of the outmost importance, then what can be said about the fitness of persons with severe or profound intellectual, visual and motor disabilities? Exactly how could their level of physical fitness be measured? Formulated differently, if a person sees little to nothing and in addition has little comprehension of its immediate environment, then how should one go about testing? How motivated would this person be to be subjected to tests and to perform the tasks as well as possible?' Finding an answer to these questions formed the main incentive for this research. The important concrete results of this research are feasible, reliable, and valid tests for assessing physical fitness of persons with severe or profound intellectual and multiple disabilities, which can be directly implemented into the daily practice.
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Higher and advanced vocational education prepare young adults for a career and enhance their life goals.The onset of mental illness generally occurs between 17 and 25 years. For young adults with psychiatric disabilities, educational resources are largely unavailable.
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Background: Persons with an intellectual disability are at increased risk of experiencing adversities. The current study aims at providing an overview of the research on how resilience in adults with intellectual disabilities, in the face of adversity, is supported by sources in their social network. Method: A literature review was conducted in the databases Psycinfo and Web of Science. To evaluate the quality of the included studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes: “positive emotions,” “network acceptance,” “sense of coherence” and “network support,” were identified as sources of resilience in the social network of the adults with intellectual disabilities. Conclusion: The current review showed that research addressing sources of resilience among persons with intellectual disabilities is scarce. In this first overview, four sources of resilience in the social network of people with intellectual disabilities were identified that interact and possibly strengthen each other.
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This thesis addresses the work participation of young adults with physical disabilities caused by a chronic condition. With increasing numbers of young people with a chronic physical condition living into adulthood, knowledge about the development of work participation in these young adults and the support they need to achieve suitable employment is needed. Interventions to improve the work participation of young adults with physical disabilities were lacking. The main objective of this thesis was to design and evaluate a vocational rehabilitation intervention to improve the work participation of young adults with physical disabilities.
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The aim of the study was to evaluate the feasibility of a new intervention to improve work participation of young adults with physical disabilities, addressing (1) implementation and costs and (2) preliminary effectiveness.
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Shared decision-making (SDM) is theprocess in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment.
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