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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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.
The purpose of the Erasmus ImpuSE project is to develop and implement Supported Education services (Toolkit) in European countries and to establish a European Network Supported Education (ENSEd). Supported Education (SEd) is defined as the provision of individualized, practical support and instruction to assist people with psychiatric disabilities to achieve their educational goals ( Anthony et al., 2002). ImpulSE is an Erasmus Multilateral project (2013-2016) and is based in four countries: Czech Republic, Netherlands, Norway & Portugal.
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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’).
This project addresses the fundamental societal problem that encryption as a technique is available since decades, but has never been widely adopted, mostly because it is too difficult or cumbersome to use for the public at large. PGP illustrates this point well: it is difficult to set-up and use, mainly because of challenges in cryptographic key management. At the same time, the need for encryption has only been growing over the years, and has become an urgent problem with stringent requirements – for instance for electronic communication between doctors and patients – in the General Data Protection Regulation (GDPR) and with systematic mass surveillance activities of internationally operating intelligence agencies. The interdisciplinary project "Encryption for all" addresses this fundamental problem via a combination of cryptographic design and user experience design. On the cryptographic side it develops identity-based and attribute-based encryption on top of the attribute-based infrastructure provided by the existing IRMA-identity platform. Identity-based encryption (IBE) is a scientifically well-established technique, which addresses the key management problem in an elegant manner, but IBE has found limited application so far. In this project it will be developed to a practically usable level, exploiting the existing IRMA platform for identification and retrieval of private keys. Attribute-based encryption (ABE) has not reached the same level of maturity yet as IBE, and will be a topic of further research in this project, since it opens up attractive new applications: like a teacher encrypting for her students only, or a company encrypting for all employees with a certain role in the company. On the user experience design side, efforts will be focused on making these encryption techniques really usable (i.e., easy to use, effective, efficient, error resistant) for everyone (e.g., also for people with disabilities or limited digital skills). To do so, an iterative, human-centred and inclusive design approach will be adopted. On a fundamental level, scientific questions will be addressed, such as how to promote the use of security and privacy-enhancing technologies through design, and whether and how usability and accessibility affect the acceptance and use of encryption tools. Here, theories of nudging and boosting and the unified theory of technology acceptance and use (known as UTAUT) will serve as a theoretical basis. On a more applied level, standards like ISO 9241-11 on usability and ISO 9241-220 on the human-centred design process will serve as a guideline. Amongst others, interface designs will be developed and focus groups, participatory design sessions, expert reviews and usability evaluations with potential users of various ages and backgrounds will be conducted, in a user experience and observation laboratory available at HAN University of Applied Sciences. In addition to meeting usability goals, ensuring that the developed encryption techniques also meet national and international accessibility standards will be a particular point of focus. With respect to usability and accessibility, the project will build on the (limited) usability design experiences with the mobile IRMA application.
