Objective: To predict mortality by disability in a sample of 479 Dutch community-dwelling people aged 75 years or older. Methods: A longitudinal study was carried out using a follow-up of seven years. The Groningen Activity Restriction Scale (GARS), a self-reported questionnaire with good psychometric properties, was used for data collection about total disability, disability in activities in daily living (ADL) and disability in instrumental activities in daily living (IADL). The mortality dates were provided by the municipality of Roosendaal (a city in the Netherlands). For analyses of survival, we used Kaplan–Meier analyses and Cox regression analyses to calculate hazard ratios (HR) with 95% confidence intervals (CI). Results: All three disability variables (total, ADL and IADL) predicted mortality, unadjusted and adjusted for age and gender. The unadjusted HRs for total, ADL and IADL disability were 1.054 (95%-CI: [1.039;1.069]), 1.091 (95%-CI: [1.062;1.121]) and 1.106 (95%-CI: [1.077;1.135]) with p-values <0.001, respectively. The AUCs were <0.7, ranging from 0.630 (ADL) to 0.668 (IADL). Multivariate analyses including all 18 disability items revealed that only “Do the shopping” predicted mortality. In addition, multivariate analyses focusing on 11 ADL items and 7 IADL items separately showed that only the ADL item “Get around in the house” and the IADL item “Do the shopping” significantly predicted mortality. Conclusion: Disability predicted mortality in a seven years follow-up among Dutch community-dwelling older people. It is important that healthcare professionals are aware of disability at early stages, so they can intervene swiftly, efficiently and effectively, to maintain or enhance the quality of life of older people.
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Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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The Sport Empowers Disabled Youth 2 (SEDY2) project encourages inclusion and equal opportunities in sport for youth with a disability by raising their sports and exercise participation in inclusive settings. It was important to ensure that the authentic views, wishes and feelings of youth with a disability regarding inclusion in sport were attained. Therefore, online focus groups were conducted with youth with a disability, their parents and sport professionals in Finland, Lithuania, Portugal and The Netherlands. During the online EUCAPA 2020 conference the preliminary results of these focus groups were presented.
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Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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Objective: To predict mortality by disability in a sample of 479 Dutch community-dwelling people aged 75 years or older. Methods: A longitudinal study was carried out using a follow-up of seven years. The Groningen Activity Restriction Scale (GARS), a self-reported questionnaire with good psychometric properties, was used for data collection about total disability, disability in activities in daily living (ADL) and disability in instrumental activities in daily living (IADL). The mortality dates were provided by the municipality of Roosendaal (a city in the Netherlands). For analyses of survival, we used Kaplan–Meier analyses and Cox regression analyses to calculate hazard ratios (HR) with 95% confidence intervals (CI). Results: All three disability variables (total, ADL and IADL) predicted mortality, unadjusted and adjusted for age and gender. The unadjusted HRs for total, ADL and IADL disability were 1.054 (95%-CI: [1.039;1.069]), 1.091 (95%-CI: [1.062;1.121]) and 1.106 (95%-CI: [1.077;1.135]) with p-values <0.001, respectively. The AUCs were <0.7, ranging from 0.630 (ADL) to 0.668 (IADL). Multivariate analyses including all 18 disability items revealed that only “Do the shopping” predicted mortality. In addition, multivariate analyses focusing on 11 ADL items and 7 IADL items separately showed that only the ADL item “Get around in the house” and the IADL item “Do the shopping” significantly predicted mortality. Conclusion: Disability predicted mortality in a seven years follow-up among Dutch community-dwelling older people. It is important that healthcare professionals are aware of disability at early stages, so they can intervene swiftly, efficiently and effectively, to maintain or enhance the quality of life of older people.
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Abstract Background: Although there is little evidence on their efficacy regarding challenging behaviour, antipsychotics are the most used psychotropic drugs in residential intellectually disabled people. Discontinuation is possible for some residential clients with intellectual disabilities. This study aimed to gain insight into support staff's perceptions of discontinuing antipsychotics in residential clients with intellectual disabilities. Method: Four focus groups were conducted in this mixed‐methods study, followed by a survey. Results: A large majority of support staff perceive antipsychotics to be effective in controlling challenging behaviour. Support staff regarded themselves as willing to contribute to the discontinuation of antipsychotics, but were more confident about achieving reductions. Conclusions: The attitude of the majority of support staff towards discontinuation provides a good basis for regularly reviewing antipsychotics use. A reduction plan should include preliminary steps, methods of monitoring and evaluating the process, and establishing measures for dealing with possible crises.
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The SEDY2 project is a three-year follow-up project (2020-2022) funded through the European Union (Erasmus+). The goal of the project is to encourage inclusion and equal opportunities in sport for children and youth with disabilities. This toolkit is aimed at people involved in educating students or volunteers on inclusion in sport for young people with disabilities, who are managing, working in a sports club or involved in the development of sports policy. They could be a volunteer, a coach, a club member or a policy maker. Inclusion in its simplest form is defined as the state of being included. In an inclusive club, every participant is welcomed, accepted, and feels that they belong. However, the needs of young people with disabilities are often unmet. Young people with disabilities have fewer opportunities to participate in quality sport activities. The goal of this toolkit is to support educators to facilitate and promote disability inclusion among mainstream sport providers through education, using the educational materials and sharing best practices and inclusive ideas from SEDY2 project.
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Background. Quality of life is an important health outcome for older persons. It predicts the adverse outcomes of institutionalization and premature death. The aim of this cross-sectional study was to determine the influence of both disability in activities of daily living (ADL) and instrumental activities of daily living (IADL) on physical and mental dimensions of quality of life. Methods. A total of 377 Dutch people aged 75 years and older completed a web-based questionnaire. This questionnaire contained the Groningen Activity Restriction Scale (GARS) for measuring ADL and IADL and the Short-Form Health Survey (SF-12) for measuring quality of life. The SF-12 distinguishes two dimensions of quality of life, a physical and mental dimension.
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Aim: The degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regarding the use of such technologies for people with intellectual and visual disabilities. The aim of this study was to gain insight into how these constructs are connected and to explore their relationship with support person’s characteristics and the support need levels of people with intellectual and visual disabilities. Methods: In total, 186 support people from a Dutch healthcare organisation focusing on people with intellectual and visual disabilities participated in an online questionnaire. We used a regression analysis to explore how the constructs, the characteristics, and the level of support needs were related. Results: Both effort expectancy (β =.35; t(185) = 5.04; p
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Introduction: 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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