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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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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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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Introduction: There is a lack of effective interventions available for Pediatric Physical Therapists (PPTs) to promote a physically active lifestyle in children with physical disabilities. Participatory design methods (co-design) may be helpful in generating insights and developing intervention prototypes for facilitating a physically active lifestyle in children with physical disabilities (6–12 years). Materials and methods: A multidisciplinary development team of designers, developers, and researchers engaged in a co-design process–together with parents, PPTs, and other relevant stakeholders (such as the Dutch Association of PPTs and care sports connectors). In this design process, the team developed prototypes for interventions during three co-creation sessions, four one-week design sprint, living-lab testing and two triangulation sessions. All available co-design data was structured and analyzed by three researchers independently resulting in themes for facilitating physical activity. Results: The data rendered two specific outcomes, (1) knowledge cards containing the insights collected during the co-design process, and (2) eleven intervention prototypes. Based on the generated insights, the following factors seem important when facilitating a physically active lifestyle: a) stimulating self-efficacy; b) stimulating autonomy; c) focusing on possibilities; d) focusing on the needs of the individual child; e) collaborating with stakeholders; f) connecting with a child's environment; and g) meaningful goal setting. Conclusion: This study shows how a co-design process can be successfully applied to generate insights and develop interventions in pediatric rehabilitation. The designed prototypes facilitate the incorporation of behavioral change techniques into pediatric rehabilitation and offer new opportunities to facilitate a physically active lifestyle in children with physical disabilities by PPTs. While promising, further studies should examine the feasibility and effectivity of these prototypes.
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This study aimed (1) to examine the contribution of robot ZORA in achieving therapeutic and educational goals in rehabilitation and special education for children with severe physical disabilities, and (2) to discover the roles professionals attribute to robot ZORA when it is used in robot-based play interventions in rehabilitation and special education for children with severe physical disabilities. A multi-centre mixed methods study was conducted among children with severe physical disabilities in two centres for rehabilitation and one school for special education. The participating children played with robot ZORA six times during a period of 6 weeks, in individual or group sessions. Quantitative data were gathered about the contribution of ZORA in reaching individual goals for all of the participating children, using the Individually Prioritized Problem Assessment (IPPA). Playfulness was measured with a visual analogue scale (0–10) and children could indicate whether they liked the sessions using a scale consisting of smileys. Video-stimulated recall interviews were used to collect qualitative data about the different roles of ZORA. In total, 33 children and 12 professionals participated in the study. The results of the IPPA showed a significant contribution of ZORA to the achievement of (children’s) individual goals. The data gathered using the IPPA during the ZORA-based interventions showed that the largest contributions of robot ZORA lie in the domains of movement skills and communication skills. Playfulness of the sessions was 7.5 on average and 93% of the sessions were evaluated as ‘enjoyable’ by the children. Overall, ZORA could positively contribute to the achievement of individual goals for children with severe physical disabilities. According to the participating professionals the most promising roles in which robot ZORA can be used are motivator, rewarder or instructor.
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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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Abstract Background People with epilepsy and mild intellectual disability have a limited adaptive capacity resulting in difficulties in communication and social skills. Virtual Reality (VR) has the potential to help this group of people to learn how to manage difficult situations. SEIN (Expertise Center for Epilepsy) provides training to the residents to improve their social and communication skills. The purpose of the exploratory study was to establish whether VR could be a suitable digital means to provide a more efficient blended training. Methods Online interviews were conducted with healthcare professionals from SEIN: two coordinators, three psychologists and two coaches. The participants were asked about their ideas for improving the social skills of the residents and their view on using VR to do so. Interviews were recorded, transcribed and analyzed using thematic analysis approach. In addition, observations were conducted during a training session to get a realistic sense of its process and contents. Observations were noted in a logbook. Findings The participants are positive to use VR in the training but point out that it is not suitable for all the residents. VR glasses were ruled out because it put the resident alone in a virtual setting. VR with a tablet is preferred to allow the residents and the healthcare professional to simultaneously view 3D simulated situations and allowing opportunities to talk about it. The development of VR contents and simulations using tablet will need to take into account relevant VR guidelines dedicated to people with epilepsy. Appropriate training for the healthcare professionals also needs to be provided. Conclusions The use of Virtual Reality in training programs to improve communication and social skills of adults with intellectual disabilities and epilepsy is promising, We advocate to utilize user-centered design and co-creation approaches with all concerned parties for further development of tablet-based VR solutions
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Objective: For more than a decade, an increase in psychiatric disabilities has been reported worldwide among students in postsecondary education. Supported Education (SEd) interventions support students with psychiatric disabilities to return to or remain in education. As not much is known about the effectiveness of SEd, we conducted a systematic review of the research on the effects of SEd on educational functioning, including study success and student satisfaction. Method: The EBSCOhost Complete browser (e.g., ERIC, MEDLINE, PsycARTICLES, PsycINFO, SocINDEX) was used to search for peer-reviewed studies representing effectiveness data on SEd published in English or Dutch/Flemish between 2009 and 2021. The quality of the research was assessed for all studies included. Results: A total number of seven studies were eligible. The results indicated a positive impact of SEd on the educational functioning (e.g., educational attainment, grade point average, comfort with the student role) of students with psychiatric disabilities. In addition, effects on time spent on educational activities, interpersonal skills, and sustained attention/vigilance were found. The quality of the studies appeared to be moderate. Conclusions and Implications for Practice: The limited available evidence suggests the added value of SEd interventions for the educational functioning of students with psychiatric disabilities. Reviewing the effectiveness of SEd was difficult due to differences in the SEd interventions used, the generally small research populations, and differing research designs. To improve the quality of research on this subject, future studies should overcome the identified shortcomings.
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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: Rapid technological development has been opening new possibilities for children with disabilities. In particular, robots can enable and create new opportunities in therapy, rehabilitation, education, or leisure. OBJECTIVE: The aim of this article is to share experiences, challenges and learned lessons by the authors, all of them with experience conducting research in the field of robotics for children with disabilities, and to propose future directions for research and development. METHODS: The article is the result of several consensus meetings to establish future research priorities in this field. CONCLUSIONS: This article outlines a research agenda for the future of robotics in childcare and supports the establishment of R4C – Robots for Children, a network of experts aimed at sharing ideas, promoting innovative research, and developing good practices on the use of robots for children with disabilities. RESULTS: Robots have a huge potential to support children with disabilities: they can play the role of a play buddy, of a mediator when interacting with other children or adults, they can promote social interaction, and transfer children from the role of a spectator of the surrounding world to the role of an active participant. To fulfill their potential, robots have to be “smart”, stable and reliable, easy to use and program, and give the just-right amount of support adapted to the needs of the child. Interdisciplinary collaboration combined with user centered design is necessary to make robotic applications successful. Furthermore, real-life contexts to test and implement robotic interventions are essential to refine them according to real needs.
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