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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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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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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Along with the rapidly growing number of disabled people participating in competitive sports, there is an increased need for (para)medical support in disability sports. Disabled athletes experience differences in body composition, metabolism, training load and habitual activity patterns compared with non-disabled athletes. Moreover, it has been suggested that the well-recognized athlete triad, and low energy availability and low bone mineral density in particular, is even a greater challenge in disabled athletes. Therefore, it is not surprising that sport nutritionists of disabled athletes have expressed an urgency for increased knowledge and insights on the nutritional demands of this group. This project aims to investigate energy expenditure, dietary intake, body composition and bone health of disabled athletes, ultimately leading to nutritional guidelines that promote health and optimal sports performance for this unique population. For this purpose, we will conduct a series of studies and implementation activities that are inter-related and build on the latest insights from sports practice, technology and science. Our international consortium is highly qualified to achieve this goal. It consists of knowledge institutes including world-leading experts in sport and nutrition research, complemented with practical insights from nutritionists working with disabled athletes and the involvement of athletes and teams through the Dutch and Norwegian Olympic committees. The international collaboration, which is a clear strength of this project, is not only focused on research, but also on the optimization of professional practice and educational activities. In this regard, the outcomes of this project will be directly available for practical use by the (para)medical staff working with disabled athletes, and will be extensively communicated to sport teams to ensure that the new insights are directly embedded into daily practice. The project outcomes will also be incorporated in educational activities for dietetics and sport and exercise students, thereby increasing knowledge of future practitioners.
Along with the rapidly growing number of disabled people participating in competitive sports, there is an increased need for (para)medical support in disability sports. Disabled athletes experience differences in body composition, metabolism, training load and habitual activity patterns compared with non-disabled athletes. Moreover, it has been suggested that the well-recognized athlete triad, and low energy availability and low bone mineral density in particular, is even a greater challenge in disabled athletes. Therefore, it is not surprising that sport nutritionists of disabled athletes have expressed an urgency for increased knowledge and insights on the nutritional demands of this group. This project aims to investigate energy expenditure, dietary intake, body composition and bone health of disabled athletes, ultimately leading to nutritional guidelines that promote health and optimal sports performance for this unique population. For this purpose, we will conduct a series of studies and implementation activities that are inter-related and build on the latest insights from sports practice, technology and science. Our international consortium is highly qualified to achieve this goal. It consists of knowledge institutes including world-leading experts in sport and nutrition research, complemented with practical insights from nutritionists working with disabled athletes and the involvement of athletes and teams through the Dutch and Norwegian Olympic committees. The international collaboration, which is a clear strength of this project, is not only focused on research, but also on the optimization of professional practice and educational activities. In this regard, the outcomes of this project will be directly available for practical use by the (para)medical staff working with disabled athletes, and will be extensively communicated to sport teams to ensure that the new insights are directly embedded into daily practice. The project outcomes will also be incorporated in educational activities for dietetics and sport and exercise students, thereby increasing knowledge of future practitioners.
