Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
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.
In my PD research, I want to focus on how collectivity is practiced in the arts, by learning from the Indonesian multidisciplinary art collective ruangrupa’s use of [the international art exhibition] ‘documenta’ as a tool, and the potential of continuing the experiences outside this group and context. The art practices programmed by ruangrupa can be understood as complex and ambiguous where art is not at the center of attention but part of a larger communal productivity. And where it is not sufficient to be merely critical, and merely voice opposition, but to engage, and create alternatives in everyday life [without being problem-solving or social design]. My research concerns the potential of continuing these practices and experiences outside this particular artist group and exhibition context. Ruangrupa’s work reveals problems of the current Western art system, how it is (hierarchically) organized, the implicit rules, norms and values it is based on. Ruangrupa's practice thus serves as an exercise and point of departure to answer questions about forms of self-organization within the art field. Its collective and multidisciplinary art practice implies the question whether it also can serve as a model for living together on a larger scale (also outside the arts), beyond hierarchies of social and professional structures. There is currently a lack of research on these particular art practices, so that they are not easily accessible for non-participants. For the art field in particular, this concerns the question whether contemporary art can and needs to take place outside established Western gallery/museum, art/curatorial paradigms and what can be learned from ruangrupa's and documenta fifteen's blending of art practice with daily life practice. This is also an urgent practical issue for art schools (including my school Willem de Kooning Academy) that increasingly develop art study programs outside the studio and gallery art paradigm.
What if living organisms communicated signals from the environment to us and thereby offered a sustainable alternative to electronic sensors? Within the field of biodesign, designers and scientists are collaborating with living organisms to produce new materials with ecological benefits. The company Hoekmine, in collaboration with designers, has been researching the potential of flavobacteria for producing sustainable colorants to be applied on everyday products. These non-harmful bacteria can change their form, texture and iridescent color in response to diverse environmental factors, such as humidity and temperature. Here, billions of cells are sensing and integrating the results as color. Therefore, Hoekmine envisions biosensors, which would minimize the use of increasingly demanded electronic sensors, and thus, the implementation of scarce and toxic materials. Developing a living sensor by hosting flavobacteria in a biobased and biodegradable flexible material offers opportunities for sustainable alternatives to electronic sensors. Aiming to take this concept to the next level, we propose a research collaboration between Avans, Hoekmine and a company specialized in biobased and biodegradable labels, Bio4Life. Together with this interdisciplinary team, we aim to bridge microbiology and embodiment design, and contribute to the development of a circular economy where digital technology and organic systems merge in the design of Living Circular Labels (LCLs). Throughout the project we will use an iterative approach between designing and testing LCLs that host living flavobacteria and additionally, methods for the end user to activate the bacteria’s growth at a given time.
With the help of sensors that made data collection and processing possible, many products around us have become “smarter”. The situation that our car, refrigerator, or umbrella communicating with us and each other is no longer a future scenario; it is increasingly a shared reality. There are good examples of such connectedness such as lifestyle monitoring of elderly persons or waste management in a smart city. Yet, many other smart products are designed just for the sake of embedding a chip in something without thinking through what kind of value they add everyday life. In other words, the design of these systems have mainly been driven by technology until now and little studies have been carried out on how the design of such systems helps citizens to improve or maintain the quality of their individual and collective lives. The CREATE-IT research center creates new solutions and methodologies in “digital design” that contribute to the quality of life of citizens. Correspondingly, this proposal focuses on one type of digital design—smart products—and investigate the concept of empowerment in relation to the design of smart products. In particular, the proposal aims to develop a model with its supplementary tools and methods for designing such products better. By following a research-through-design methodology, the proposal intends to offer a critical understanding on designing smart products. Along with its theoretical contribution, the proposal will also aid the students of ICT and design, and professionals such as designers and engineers to create smart products that will empower people and the industry to develop products grounded in a clear user experience and business model.
