To date, it is unknown whether waist circumference can be measured validly and reliably when a subject is in a supine position. This issue is relevant when international standards for healthy participants are applied to persons with severe intellectual, sensory, and motor disabilities. Thus, the aims of our study were (1) to determine the validity of waist circumference measurements obtained in a supine position, (2) to formulate an equation that predicts standing waist circumference from measurements obtained in a supine position, and (3) to determine the reliability of measuring waist circumference in persons with severe intellectual, sensory, and motor disabilities. First, we performed a validity study in 160 healthy participants, in which we compared waist circumference obtained in standing and supine positions. We also conducted a test-retest study in 43 participants with severe intellectual, sensory, and motor disabilities, in which we measured the waist circumference with participants in the supine position. Validity was assessed with paired t-test and Wilcoxon signed rank test. A prediction equation was estimated with multiple regression analysis. Reliability was assessed by Wilcoxon signed rank test, limits of agreement (LOA), and intraclass correlation coefficients (ICC). Paired t-test and Wilcoxon signed rank test revealed significant differences between standing and supine waist circumference measurements. We formulated an equation to predict waist circumference (R(2)=0.964, p<0.001). There were no significant differences between test and retest waist circumference values in disabled participants (p=0.208; Wilcoxon signed rank test). The LOA was 6.36 cm, indicating a considerable natural variation at the individual level. ICC was .98 (p<0.001). We found that the validity of supine waist circumference is biased towards higher values (1.5 cm) of standing waist circumference. However, standing waist circumference can be predicted from supine measurements using a simple prediction equation. This equation allows the comparison of supine measurements of disabled persons with the international standards. Supine waist circumference can be reliably measured in participants with severe intellectual, sensory, and motor disabilities.
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Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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The concept of human-computer integration (HInt) is entering a new evolutionary phase, that leads to a paradigm shift from interaction to the integration of computing devices with the human body (Farooq & Grudin, 2017). This embodied integration, where a computer tightly integrates with the human body (Mueller, Maes & Grudin, 2019), engages the human being in mutual give-and-take relationships with computational systems. The paradigm shift in human-computer integration might have more to do with ‘becoming-in-the-world’ (Shildrick, 2022) than with ‘being-in-the-world’ requires a rethinking in the philosophy on the human body and its technological intertwining. Our research project starts from the belief that new insight and meanings on bodily understanding in the context of Human-Computer Integration can only be achieved through a creative and artistic exploration of the ‘lived experience’ of disabled bodies. In this project, research activities will be grounded in feminist philosophy and performed into the context of disability, yet the methodological approach of exploring the ‘felt sense’ and ‘kinaesthetics’ of the disability materiality takes place through performative design practice at the intersection of the HCI-related research fields of Soma Design (Höök, 2018) and Somaesthetics (Shusterman, 2008), as well as artistic disciplines, such as Musicology and Music Therapy, Dance and Dance Movement Therapy, Disability Arts and Critical Disability Studies. This paper starts with an explanation of the current research situation, and then provides background information on the different schools of thought that are present in the project. It continues with describing the research goals, methods, and research questions. The final part of the paper consists of an overview of three preliminary studies which explore human-computer relationships through the combination of performative practice and cyber-physical demonstrators, created by bachelor-students ‘Communication and Multimedia Design’ at Amsterdam University of Applied Sciences in The Netherlands and master-students ‘Web, Communication, and Information Systems’ at the Fachhochschule Kufstein in Austria. The takeaway message of this paper is that to advance our understandings of human-computer integration, we must consider a perspectivist viewpoint to develop alternative ways for exploring the bodily complexities of human-computer integration. We further argue that disability can be a catalyst for innovation and life-changing design in health and well-being, as it automatically emphasises the need for engaging with ‘being human’ in the context of the human-computer relationship. This PhD-project is productively looking for new forms of studying the context of disability, to unveil, excavate and expose knowledge for human- computer integration (HInt) that would otherwise be overlooked in the HCI-community.
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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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BACKGROUND: Anthropometric measurements are widely used to reliably quantify body composition and to estimate risks of overweight in healthy subjects and in patients. However, information about the reliability of anthropometric measurements in subjects with severe intellectual and sensory disabilities is lacking.OBJECTIVE: The purpose of this study was to determine the feasibility and the test-retest reliability of body composition measures in subjects with severe intellectual and sensory disabilities.METHOD: The study population consisted of 45 subjects with severe intellectual and sensory disabilities. Body mass index, waist circumference, skin folds and tibia length were measured. Reliability was assessed by Wilcoxon signed rank test, limits of agreement (LOA) and intraclass correlation coefficients. The outcomes were compared with values provided by the World Health Organization.RESULTS: There were no significant differences between test and retest (P < 0.05). For the skinfold measurements, however, the LOA was insufficient. Intraclass correlation coefficients for all variables, except skinfold measurements, were 0.90 or above.CONCLUSION: Test-retest reliability and feasibility for all measurements are acceptable in subjects with severe intellectual and sensory disabilities. Skinfold measurements, however, could not be reliably performed in these subjects. Measuring tibia length and using the determined formula to calculate body height from tibia length is a reliable alternative for measuring body height. Although measuring the body height of subjects with severe disabilities was feasible, measuring tibia length was more feasible.
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Objective: Despite the common occurrence of lower levels of physical activity and physical fitness in youth with spina bifida (SB) who use a wheelchair, there are very few tests available to measure and assess these levels. The purpose of this study was to determine reliability and the physiologic response of the 6-minute push test (6MPT) in youth with SB who self-propel a wheelchair. Methods: In this reliability and observational study, a sample of 53 youth with SB (5-19 years old; mean age = 13 years 7 months; 32 boys and 21 girls) who used a wheelchair performed 2 exercise tests: the 6MPT and shuttle ride test. Heart rate, minute ventilation, respiratory exchange ratio, and oxygen consumption were measured using a calibrated mobile gas analysis system and a heart rate monitor. For reliability, intraclass correlation coefficients (ICCs), SE of measurement, smallest detectable change for total covered distance, minute work, and heart rate were calculated. Physiologic response during the 6MPT was expressed as percentage of maximal values achieved during the shuttle ride test. Results: The ICCs for total distance and minute work were excellent (0.95 and 0.97, respectively), and the ICC for heart rate was good (0.81). The physiologic response during the 6MPT was 85% to 89% of maximal values, except for minute ventilation (70.6%). Conclusions: For most youth with SB who use a wheelchair for mobility or sports participation, the 6MPT is a reliable, functional performance test on a vigorous level of exercise. Impact: This is the first study to investigate physiologic response during the 6MPT in youth (with SB) who are wheelchair using. Clinicians can use the 6MPT to evaluate functional performance and help design effective exercise programs for youth with SB who are wheelchair using. Keywords: 6-minute push test; adolescent; disabled children; spinal diseases; wheelchairs.
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In this paper, I propose an affective-formalist reading of what I call the affective affordances of disability; the way in which the representation of disability is able to move us. Through a comparative reading of two artworks, Michelangelo's David and Berlinde de Bruyckere's Into One-another Ill, to P.P.P., this paper explores the relationship between how reading for form in the mimetic representation of disability informs how we are affected by it. Concurrently, it explores how affect, conceived as a visceral force that moves through and impresses on bodies, can be generated through the way in which disabled bodies are represented in art. LinkedIn: https://www.linkedin.com/in/andrieshiskes/
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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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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. This SEDY2 Inclusive (Online) Focus Group Guidance aimed to develop an easy-to-use guidance document on how to deliver inclusive focus groups to attain the authentic views, wishes and feelings of children and youth with a disability about inclusion in sport in practice. This guidance document was produced in order to support other practitioners in conducting inclusive focus groups. The focus group guidance can easily be adapted to cover other topics and can also be used effectively with all (young) people.
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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 Collection of Inclusion Best Practices report contains good examples of inclusion on youth with a disability in sport at the community and institutional level. This report includes a detailed description of the process of building and using the SEDY2 approach for collection international best practices in sport, the criteria and template used to collect the SEDY2 best practices and the list of SEDY2 international best practices on inclusion in sport for youth with a disability.
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