In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
MULTIFILE
This article examines the impact of the COVID-19 pandemic on the sign language interpreting profession drawing on data from a fourth and final survey conducted in June 2021 as part of a series of online “living surveys” during the pandemic. The survey, featuring 331 respondents, highlights significant changes in the occupational conditions and practices of sign language interpreters due to the sudden shift towards remote video-mediated interpreting. The findings reveal a range of challenges faced by interpreters, including the complexities of audience design, lack of backchanneling from deaf consumers, the need for heightened self-monitoring, nuanced conversation management, and team work. Moreover, the study highlights the physical and mental health concerns that have emerged among interpreters as a result of the shift in working conditions, and a need for interpreters to acquire new skills such as coping with the multimodal nature of online interpreting. While the blend of remote, hybrid, and on-site work has introduced certain advantages, it also poses new challenges encompassing workload management, online etiquette, and occupational health concerns. The survey’s findings underscore the resilience and adaptability of SLIs in navigating the shift to remote interpreting, suggesting a lasting transformation in the profession with implications for future practice, training, and research in the post-pandemic era.
DOCUMENT
The main objective is to write a scientific paper in a peer-reviewed Open Access journal on the results of our feasibility study on increasing physical activity in home dwelling adults with chronic stroke. We feel this is important as this article aims to close a gap in the existing literature on behavioral interventions in physical therapy practice. Though our main target audience are other researchers, we feel clinical practice and current education on patients with stroke will benefit as well.
A continuation and update of the first ALT-ER project, which produced an app for early-years students that allowed them to express their feelings and tell stories related to pro-social and important developmental themes. This follow-up project will expand the software and themes, particularly in light of the COVID-19 pandemic, to reflect a wider range of experiences for young people.
This PD project aims to gather new knowledge through artistic and participatory design research within neighbourhoods for possible ways of addressing and understanding the avoidance and numbness caused by feelings of vulnerability, discomfort and pain associated with eco-anxiety and chronic fear of environmental doom. The project will include artistic production and suitable forms of fieldwork. The objectives of the PD are to find answers to the practice problem of society which call for art that sensitises, makes aware and helps initiate behavioural change around the consequences of climate change. Rather than visualize future sea levels directly, it will seek to engage with climate change in a metaphorical and poetic way. Neither a doom nor an overly techno-optimistic scenario seem useful to understand the complexity of flood risk management or the dangers of flooding. By challenging both perspectives with artistic means, this research hopes to counter eco-anxiety and create a sense of open thought and susceptibility to new ideas, feelings and chains of thought. Animation and humour, are possible ingredients. The objective is to find and create multiple Dutch water stories, not just one. To achieve this, it is necessary to develop new methods for selecting and repurposing existing impactful stories and strong images. Citizens and students will be included to do so via fieldwork. In addition, archival materials will be used. Archives serve as a repository for memory recollection and reuse, selecting material from the audiovisual archive of the Institute of Sound & Vision will be a crucial part of the creative work which will include two films and accompanying music.
