BACKGROUND: There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs.METHOD: This study was part of the longitudinal 'Healthy Ageing and Intellectual Disability' study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival.RESULTS: Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001).CONCLUSION: The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.
MULTIFILE
Stress is increasingly being recognized as one of the main factors that is negatively affecting our health, and therefore there is a need to regulate daily stress and prevent long-term stress. This need seems particularly important for adults with mild intellectual disabilities (MID) who have been shown to have more difficulties coping with stress than adults without intellectual disabilities. Hence, the development of music therapy interventions for stress reduction, particularly within populations where needs may be greater, is becoming increasingly important. In order to gain more insight into the practice-based knowledge on how music therapists lower stress levels of their patients with MID during music therapy sessions, we conducted focus group interviews with music therapists working with adults with MID (N = 13) from different countries and clinical institutions in Europe. Results provide an overview of the most-used interventions for stress reduction within and outside of music. Data-analysis resulted in the further specification of therapeutic goals, intervention techniques, the use of musical instruments, and related therapeutic change factors. The main findings indicate that music therapists used little to no receptive (e.g., music listening) interventions for stress reduction, but preferred to use active interventions, which were mainly based on musical improvisation. Results show that three therapy goals for stress relief could be distinguished. The goal of “synchronizing” can be seen as a sub goal because it often precedes working on the other two goals of “tension release” or “direct relaxation,” which can also be seen as two ways of reaching stress reduction in adults with MID through music therapy interventions. Furthermore, the tempo and the dynamics of the music are considered as the most important musical components to reduce stress in adults with MID. Practical implications for stress-reducing music therapy interventions for adults with MID are discussed as well as recommendations for future research.
People with disabilities (PWDs) face discrimination in the hospitality workplace. The aim of this paper is therefore to frame issues surrounding the employment of PWDs in the hospitality industry in normative ethical terms. To achieve this aim, we conducted twenty-eight semi-structured interviews with owners/managers of hospitality businesses and other relevant stakeholders. Drawing on the ethics of justice and ethics of care, our study found that when organisations demonstrated to their employees and other stakeholders the fairness in the procedures taken to implement PWD inclusion actions, the inclusion actions were significantly supported by coworkers, and the organisations were able to achieve distributive justice and care for PWDs. This study, thus, demonstrated that organisational members were willing to take part in caring actions for employees with disabilities (EWDs) not only when they perceived that inclusion actions for EWDs were procedurally fair, but also when they perceived that the PWDs deserved distributive justice outcomes.
MULTIFILE
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.
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.
Wheelchair users with a spinal cord injury (SCI) or amputation generally lead an inactive lifestyle, associated with reduced fitness and health. Digital interventions and sport and lifestyle applications (E-platforms) may be helpful in achieving a healthy lifestyle. Despite the potential positive effects of E-platforms in the general population, no studies are known investigating the effects for wheelchair users and existing E-platforms can not be used to the same extent and in the same manner by this population due to differences in physiology, body composition, exercise forms and responses, and risk injury. It is, therefore, our aim to adapt an existing E-platform (Virtuagym) within this project by using existing data collections and new data to be collected within the project. To reach this aim we intend to make several relevant databases from our network available for analysis, combine and reanalyze these existing databases to adapt the existing E-platform enabling wheelchair users to use it, evaluate and improve the use of the adapted E-platform, evaluate changes in healthy active lifestyle parameters, fitness, health and quality of life in users of the E-platform (both wheelchair users and general population) and identify determinants of these changes, identify factors affecting transitions from an inactive lifestyle, through an intermediate level, to an athlete level, comparing wheelchair users with the general population, and comparing Dutch with Brazilian individuals. The analysis of large datasets of exercise and fitness data from various types of individuals with and without disabilities, collected over the last years both in the Netherlands and Brazil, is an innovative and potentially fruitful approach. It is expected that the comparison of e.g. wheelchair users in Amsterdam vs. Sao Paulo or recreative athletes vs. elite athletes provides new insight in the factors determining a healthy and active lifestyle.
