Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and 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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Een actieonderzoek naar de ontwikkeling van een leerlingversterkend onderwijsprogramma met het doel leerlingen met een visuele beperking beter voor te bereiden op hun transitie naar volwassenheid en waar mogelijk een betaalde baan. Belangrijke thema's: inclusie en exclusie, empowerment, stem van de leerling, transitie naar volwassenheid en het burgerschapsmodel tegenover het medische model.
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Background: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. Method: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. Conclusion: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.
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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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Abstract: Disability is associated with lower quality of life and premature death in older people. Therefore, prevention and intervention targeting older people living with a disability is important. Frailty can be considered a major predictor of disability. In this study, we aimed to develop nomograms with items of the Tilburg Frailty Indicator (TFI) as predictors by using cross-sectional and longitudinal data (follow-up of five and nine years), focusing on the prediction of total disability, disability in activities of daily living (ADL), and disability in instrumental activities of daily living (IADL). At baseline, 479 Dutch community-dwelling people aged 75 years participated. They completed a questionnaire that included the TFI and the Groningen Activity Restriction Scale to assess the three disability variables. We showed that the TFI items scored different points, especially over time. Therefore, not every item was equally important in predicting disability. ‘Difficulty in walking’ and ‘unexplained weight loss’ appeared to be important predictors of disability. Healthcare professionals need to focus on these two items to prevent disability. We also conclude that the points given to frailty items differed between total, ADL, and IADL disability and also differed regarding years of follow-up. Creating one monogram that does justice to this seems impossible.
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Background: Advanced statistical modeling techniques may help predict health outcomes. However, it is not the case that these modeling techniques always outperform traditional techniques such as regression techniques. In this study, external validation was carried out for five modeling strategies for the prediction of the disability of community-dwelling older people in the Netherlands. Methods: We analyzed data from five studies consisting of community-dwelling older people in the Netherlands. For the prediction of the total disability score as measured with the Groningen Activity Restriction Scale (GARS), we used fourteen predictors as measured with the Tilburg Frailty Indicator (TFI). Both the TFI and the GARS are self-report questionnaires. For the modeling, five statistical modeling techniques were evaluated: general linear model (GLM), support vector machine (SVM), neural net (NN), recursive partitioning (RP), and random forest (RF). Each model was developed on one of the five data sets and then applied to each of the four remaining data sets. We assessed the performance of the models with calibration characteristics, the correlation coefficient, and the root of the mean squared error. Results: The models GLM, SVM, RP, and RF showed satisfactory performance characteristics when validated on the validation data sets. All models showed poor performance characteristics for the deviating data set both for development and validation due to the deviating baseline characteristics compared to those of the other data sets. Conclusion: The performance of four models (GLM, SVM, RP, RF) on the development data sets was satisfactory. This was also the case for the validation data sets, except when these models were developed on the deviating data set. The NN models showed a much worse performance on the validation data sets than on the development data sets.
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A significant proportion of adolescents with chronic musculoskeletal pain (CMP) experience difficulties in physical functioning, mood and social functioning, contributing to diminished quality of life. Generalized joint hypermobility (GJH) is a risk factor for developing CMP with a striking 35-48% of patients with CMP reporting GJH. In case GJH occurs with one or more musculoskeletal manifestations such as chronic pain, trauma, disturbed proprioception and joint instability, it is referred to as generalized hypermobility spectrum disorder (G-HSD). Similar characteristics have been reported in children and adolescents with the hypermobile Ehlers-Danlos Syndrome (hEDS). In the management of CMP, a biopsychosocial approach is recommended as several studies have confirmed the impact of psychosocial factors in the development and maintenance of CMP. The fear-avoidance model (FAM) is a cognitive-behavioural framework that describes the role of pain-related fear as a determinant of CMP-related disability. Pubmed was used to identify existing relevant literature focussing on chronic musculoskeletal pain, generalized joint hypermobility, pain-related fear and disability. Relevant articles were cross-referenced to identify articles possibly missed during the primary screening. In this paper the current state of scientific evidence is presented for each individual component of the FAM in hypermobile adolescents with and without CMP. Based on this overview, the FAM is proposed explaining a possible underlying mechanism in the relations between GJH, pain-related fear and disability. It is assumed that GJH seems to make you more vulnerable for injury and experiencing more frequent musculoskeletal pain. But in addition, a vulnerability for heightened pain-related fear is proposed as an underlying mechanism explaining the relationship between GJH and disability. Further scientific confirmation of this applied FAM is warranted to further unravel the underlying mechanism. In explaining disability in individuals with G-HSD/hEDS, it is important to focus on both the physical components related to joint hypermobility, in tandem with the psychological components such as pain-related fear, catastrophizing thoughts and generalized anxiety.
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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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This research aims to contribute to a better understanding of strategic collaborations between work-integration social enterprises (WISEs) and for-profit enterprises (FPEs) with the joint objective to improve labour market opportunities for vulnerable groups. We find that most collaborations strive towards integration or transformation in order to make more social impact.
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