Within Facility Management (FM) the connection between organisation and space is a well-established topic. This study was made in the context of discovery and explored to what extent changes in organisation and space can contribute to the quality of life of intellectually disabled residents with a severe behavioural disorder (hereafter called residents) and a need for low stimulus intensity.In scientific literature the influence of the spatial environment on well-being of this specific group of residents has been described extensively by scholars in psychology. However, the joint optimisation of organisation and space is relatively new in FM and relates to studies on evidence based design and healing environments.This current study explores the relationship between different configurations in organisation and space in real life on one side and aggressive behaviour of two residents on the other. The research design was a longitudinal comparative case study and combined retrospective analysis with analysis of the current situation. The applied methods included document analysis, interview, photography, and walkthrough.Residents were exposed to different degrees of stimulus intensity in different periods. In periods where residents were exposed to a low stimulus intensity in organisation and space a relatively low number of incidents was reported. To be more precise: in periods where residents were exposed to few peer-residents, a custom-made team, a stable team composition, a standard team approach, and many personal spaces less incidents were reported than in periods where residents were often exposed to peer-residents, a group-based team, changes in team composition, no standard team approach, and many group spaces. These preliminary results suggest that a fit between the needs of residents with organisational and spatial designs can improve the well-being of residents. Further research among a larger population of residents should reveal if the current results have more general validity and whether these current findings would also be valid for other care institutes.
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Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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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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Background The experiences of residents who have communication difficulties such as dysphasia are largely absent from the literature. Aim To illuminate the everyday experiences of four residents with severe communication difficulties living in a residential care setting in the Netherlands. Methodology & Methods A collective case study methodology was used. Seventy-five hours of observation, interview and documentary data was gathered over six weeks. Alternative strategies of communication were developed to enable the co-creation of dialogue between participants and researcher. For example, a participant who could not talk used intentionally created artwork to share her ideas with the researcher. Findings Participants' daily experiences were characterised by struggling against the constraints of the residential setting: having to wait, having unmet needs, experiencing vulnerability and uncertainty. Participants' communication difficulties exacerbated these constraints. Their experiences of struggling were sometimes ameliorated by significant social contact with family or particular staff members, and engaging in enjoyable activities. Occasionally the experiences of enjoying the here-and-now, and being 'seen' as a person by the other, would create beautiful moments in which truly person centred engagement would occur. These moments were neither articulated nor recorded, and were thus invisible after they had occurred. Similarly, the experiences of struggling against the constraints were neither acknowledged nor recorded. Significant experiences in the lives of these four residents were therefore invisible to others. The unifying theme representing the participants' daily experiences was: That which goes unsaid. Discussion It was necessary to develop communication strategies which would by-pass the researcher's assumptions and enable participants to introduce their own ideas and opinions. This ongoing process of co-creation of dialogue required work from, and trust between, participants and researcher. What is new? Expressly seeking the views of residents with communication difficulties Successfully using process consent with participants in this situation Using intentionally created artwork during data gathering in this context What has regional, national or international relevance? The findings indicate that people with communication difficulties may not receive optimal care in residential settings in the Netherlands. Methods are described which could be used by practitioners in their everyday work, and which show facilitators or practice developers how they can help carers to engage in more effective communication with this kind of resident. Additionally, this research contributes to the international discussion about ethical participation of vulnerable people in research.
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The Sport Empowers Disabled Youth 2 (SEDY2) project encourages inclusion and equal opportunities in sport for youth with a disability by raising their sports and exercise participation in inclusive settings. The SEDY2 Inclusion Handbook is aimed at anybody involved in running or working in a sport club, such as a volunteer, a coach, or a club member. The goal of the handbook is to facilitate disability inclusion among mainstream sport providers by sharing SEDY2 project partners’ best practices and inclusive ideas.
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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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Presentation at the European Conference for Social Work Research, Leuven: Belgium
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Real-time location systems (RTLS) can be implemented in aged care for monitoring persons with wandering behaviour and asset management. RTLS can help retrieve personal items and assistive technologies that when lost or misplaced may have serious financial, economic and practical implications. Various ethical questions arise during the design and implementation phases of RTLS. This study investigates the perspectives of various stakeholders on ethical questions regarding the use of RTLS for asset management in nursing homes. Three focus group sessions were conducted concerning the needs and wishes of (1) care professionals; (2) residents and their relatives; and (3) researchers and representatives of small and medium-sized enterprises (SMEs). The sessions were transcribed and analysed through a process of open, axial and selective coding. Ethical perspectives concerned the design of the system, the possibilities and functionalities of tracking, monitoring in general and the user-friendliness of the system. In addition, ethical concerns were expressed about security and responsibilities. The ethical perspectives differed per focus group. Aspects of privacy, the benefit of reduced search times, trust, responsibility, security and well-being were raised. The main focus of the carers and residents was on a reduced burden and privacy, whereas the SMEs stressed the potential for improving products and services. Original article at MDPI: https://doi.org/10.3390/info9040080
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The transition from institutional to community care for vulnerable people has been shaping the welfare system in Europe over the last decades. For the period of 2014-20, deinstitutionalisation became one oft he highlighted priorities oft he European Commission in order to promote reforms in disability and mental care in convergence regions, too. Between 2007 and 2013, Estonia as many other Eastern European countries implemented the first wave of deinstitutionalisation, and during the new EU budget period a second wave will be carried out in order to continue and hopefully complete the transition. In this study, we try to give an overview of the experiences of different European countries, highlighting good practices and possible pitfalls
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Background: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. Method: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. Conclusion: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.
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