Total and chronic food refusal (i.e., the refusal of all types of food during a prolonged period) in young children with developmental disabilities can be treated effectively using a combination of environmental interventions. However, no guidelines for the selection of food items to offer the child in these interventions are available. The aim of the present study was to assess the preferences for specific food items of young Dutch nondisabled children (N = 254) in order to enable trainers to select food items that maximize success of feeding interventions. Results indicate that 54 out of 107 food items were found to be preferred. The mean appreciation scores of boys and girls did not differ significantly for these preferred food items, except for raisins and brown bread. Also, there were no differences between the distinguished age-groups, except for peach. Recommendations for the selection of food items within feeding intervention for total and chronic food refusal in young children with developmental disabilities are given.
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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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This thesis aims to develop and validate a comprehensive and adaptable activity monitoring system that quantifies physical behaviours in children with and without developmental disabilities, including those utilizing assistive devices. This system seeks to overcome the current limitations in the accuracy and feasibility of existing monitoring devices by providing robust measurements in real-world settings.
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In order to optimize collaboration between Speech and Language Therapists (SLTs) and parents of children with Developmental Language Disorders (DLD), our aim was to study what is needed for SLTs to transition from the parent-as-therapist aide model to the FCC model and optimal collaborate with parents. Chapter 2 discusses the significance of demystifying collaborative working by making explicit how collaboration works. Chapter 3 examines SLTs’ perspectives on engaging parents in parent-child interaction therapy, utilizing a secondary analysis of interview data. Chapter 4 presents a systematic review of specific strategies that therapists can employ to enhance their collaboration with parents of children with developmental disabilities. Chapter 5 explores the needs of parents in their collaborative interactions with SLTs during therapy for their children with DLD, based on semi-structured interviews. Chapter 6 reports the findings from a behavioral analysis of how SLTs currently engage with parents of children with DLD, using data from focus groups. Chapter 7 offers a general discussion on the findings of this thesis, synthesizing insights from previous chapters to propose recommendations for practice and future research.
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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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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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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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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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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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Dit artikel is een samenvatting van het artikel: The convergent validity of a Dutch Screening tool for Dysphagia (SignaleringslijstVerslikken) for people with severe or profound intellectual and multiple disabilities. Journal of Applied Research in IntellectualDisabilities, 2019, 32, 994–1001.1
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