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.
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
The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centered methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM. We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53). ageing, dementia, Dementia Care Mapping, intellectual disability, mixed-methods, personcentred care
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In the Netherlands approximately 2 million inhabitants have one or more disabilities. However, just like most people they like to travel and go on holiday.In this project we have explored the customer journey of people with disabilities and their families to understand their challenges and solutions (in preparing) to travel. To get an understanding what ‘all-inclusive’ tourism would mean, this included an analysis of information needs and booking behavior; traveling by train, airplane, boat or car; organizing medical care and; the design of hotels and other accommodations. The outcomes were presented to members of ANVR and NBAV to help them design tourism and hospitality experiences or all.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
Broers en zussen van mensen met (Z)EVMB zijn vaak levenslang betrokken bij de zorg voor hun broer of zus. Gedurende het leven veranderen de rollen die zij vervullen. Wanneer de ouders meer op leeftijd raken en de zorgtaken voor hen zwaarder worden of niet meer mogelijk zijn, komen broers en zussen voor de vraag te staan welke rollen zij in deze nieuwe situatie willen vervullen. In dit promotieonderzoek willen we inzicht krijgen in de rollen die volwassen broers en zussen vervullen in het leven van mensen met (Z)EVMB. Wat zijn de ervaringen van broers en zussen en welke ondersteuningsbehoeften hebben zij? En wat betekent hun betrokkenheid voor de sociale contacten en participatie van hun broer of zus met (Z)EVMB? Ook willen we kijken naar de samenwerking tussen zorgprofessionals en familieleden van de tweede generatie. Hoe verloopt deze samenwerking en hoe wordt betrokkenheid van tweede generatie familieleden gefaciliteerd?
