This paper explores the intersection of Human-Comput- er Integration (HInt) and Critical Disability Studies (CDS) to explore how a posthumanistic epistemology in design can produce knowledge and know-how for the application do- mains of Health and Well-being. To use disability as a catalyst for innovation, a rethinking in the philosophy of sciences is necessary to establish knowledge production that emerges from new fluid politics that operate in ‘composition’ instead of ‘organization’. By placing an emphasis on nomadic practic- es that move beyond fixed borders, the encounters between Disability Studies or Human-Computer Integration can pro- duce situated, embodied and contingent design knowledge that study deviant and complex embodiment, and the kinds of alterations of human characteristics and abilities through technology. The first section of this paper explores the re- thinking in the philosophy of sciences. The second section ar- gues for a posthumanistic epistemology in design, which can be seen as the perfect way to produce situated, embodied and contingent design knowledge on the intersection of HInt and CDS. The final section of this paper highlights the poten- tial for the disciplines of Somatechnics and Soma Design to engage in each other’s body of knowledge to produce trans- formative knowledge through a shared focus on deviant em- bodiment and disability. The takeaway message of this paper is that the intersection of HInt and CDS potentially leads to new – otherwise overlooked - insights on the human-technol- ogy relationship, and therefore can take part in the historical strive for man-machine symbiosis. The posthumanist episte- mology allows for alternative ways of thinking that move be- yond the current Humanist perspective, and builds on a plu- ral, relational and expansive foundation for the development of design practices that catalyze innovation in the application domains of Health and Well-being.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.
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Progressive disability develops with older age in association with underlying disease, comorbidity and frailty. Physical performance characteristics are important to improve the physical condition of older persons and therefore may be able to prevent or delay the onset of (progressive) disability. However lack of understanding of the physiology and etiology of functional decline leading to disability causes a problem in the development of effective preventive interventions. The aim of the present review is to determine which physical performance characteristics are determinants of disability in the older general population.
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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.
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Een actieonderzoek naar de ontwikkeling van een leerlingversterkend onderwijsprogramma met het doel leerlingen met een visuele beperking beter voor te bereiden op hun transitie naar volwassenheid en waar mogelijk een betaalde baan. Belangrijke thema's: inclusie en exclusie, empowerment, stem van de leerling, transitie naar volwassenheid en het burgerschapsmodel tegenover het medische model.
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Internationaal onderzoek laat zien dat ingrijpende jeugdervaringen, ook wel Adverse Childhood Experiences (ACE’s) genoemd, een sleutelrol spelen in de ontwikkeling van jeugdigen en hun (latere) psychische en fysieke gezondheid (o.a. Felitti et al., 1998; McLaughlin, 2016). Jeugdigen met verstandelijke beperkingen en hun ouders zijn helaas sterk ondervertegenwoordigd in internationaal onderzoek naar ACE’s, terwijl het belangrijk is dat de huidige inzichten ook kunnen bijdragen aan de verbetering van hun gezondheid en welzijn (o.a. Keesler, 2014; Northway, 2017). Uit verschillende studies blijkt namelijk dat mensen met een verstandelijke beperking vaker geestelijke en fysieke gezondheidsproblemen hebben (Northway, 2017). Daarnaast blijkt dat zij vaker worden blootgesteld aan een groter aantal ingrijpende levensgebeurtenissen (o.a. Emerson, 2015; Mason-Roberts et al., 2018) en dat deze blootstelling gerelateerd is aan een verhoogd risico op geestelijke gezondheidsproblemen (zie Vervoort-Schel et al., 2018 voor verwijzingen). De premisse van de ACE’s-studies is dat het voorkomen of verminderen van ingrijpende jeugdervaringen een positieve invloed heeft op gezondheid en welzijn in het leven (Northway, 2017). Het is veelbelovend om daar verder onderzoek naar te doen.
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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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Background: Experiencing flow, an optimal psychological state, can support health and well-being. A developmental perspective on flow so far examines strategies to facilitate these experiences in the face of developmental losses such as ageing. People with disabilities experience restrictions in participation and thus fewer occupations that potentially induce flow. Therefore, contributions to this perspective can be gained from disabled people’s experiences. Thus, this meta-study synthesises qualitative research literature to determine the contribution to a developmental perspective on flow in people with disabilities. Methods: Following a systematic search of four databases (PsycInfo (EBSCO), PubMed, CINAHL (EBSCO), Scopus) 10 qualitative, peer-reviewed studies were included, and critically appraised. Findings as well as methodologies, and underlying theories were analysed and synthesised. Findings: Various methodologies have been used to explore flow experiences of people with disabilities. Incongruencies between underlying theories and chosen methods, as well as lack of researcher reflexivity impacted the trustworthiness of some studies. All studies originated within occupational therapy research and were located in the global North, implying assumptions about occupation and well-being and a rehabilitation framework. The individuals’ choice and control, and adaptations of environment and occupation emerged from the meta-synthesis as important factors to experiencing flow. Conclusion: To enhance opportunities for flow in the lives of people with disabilities, a shift of perspective from individual impairments towards issues of accessibility and occupational justice is needed. Based on this meta-study, critical disability theory and participatory frameworks are recommended for future research to explore strategies to enhance access to flow inducing occupations.
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Background: Follow-up of stroke survivors is important to objectify activity limitations and/or participations restrictions. Responsive measurement tools are needed with a low burden for professional and patient. Aim: To examine the concurrent validity, floor and ceiling effects and responsiveness of both domains of the Late-Life Function and Disability Index Computerized Adaptive Test (LLFDI-CAT) in first-ever stroke survivors discharged to their home setting. Design: Longitudinal study. Setting: Community. Population: First ever stroke survivors. Methods: Participants were visited within three weeks after discharge and six months later. Stroke Impact Scale (SIS 3.0) and Five-Meter Walk Test (5MWT) outcomes were used to investigate concurrent validity of both domains, activity limitations, and participation restriction, of the LLFDI-CAT. Scores at three weeks and six months were used to examine floor and ceiling effects and change scores were used for responsiveness. Responsiveness was assessed using predefined hypotheses. Hypotheses regarding the correlations with change scores of related measures, unrelated measures, and differences between groups were formulated. Results: The study included 105 participants. Concurrent validity (R) of the LLFDI-CAT activity limitations domain compared with the physical function domain of the SIS 3.0 and with the 5MWT was 0.79 and -0.46 respectively. R of the LLFDI-CAT participation restriction domain compared with the participation domain of the SIS 3.0 and with the 5MWT was 0.79 and -0.41 respectively. A ceiling effect (15%) for the participation restriction domain was found at six months. Both domains, activity limitations and participation restrictions, of the LLFDI-CAT, scored well on responsiveness: 100% (12/12) and 91% (12/11) respectively of the predefined hypotheses were confirmed. Conclusions: The LLFDI-CAT seems to be a valid instrument and both domains are able to detect change over time. Therefore, the LLFDI-CAT is a promising tool to use both in practice and in research. Clinical rehabilitation impact: The LLFDI-CAT can be used in research and clinical practice.
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