Tenascin-X deficiency causing classical-like Ehlers Danlos syndrome type 1 in humans is a significant risk factor for GI and tracheal ruptures.

Background: Classical-like Ehlers Danlos Syndrome type 1 (clEDS1) is a very rare form of Ehlers Danlos Syndrome (EDS) caused by tenascin-X (TNX) deficiency, with only 56 individuals reported. TNX is an extracellular matrix protein needed for collagen stability. Previous publications propose that individuals with clEDS1 might be at risk for gastrointestinal (GI) tract perforations and/or tracheal ruptures.

Family concerns in organ donor conversations: a qualitative embedded multiple-case study.

Background: Listening and responding to family concerns in organ and tissue donation is generally considered important, but has never been researched in real time. We aimed to explore in real time, (a) which family concerns emerge in the donation process, (b) how these concerns manifest during and after the donor conversation, and (c) how clinicians respond to the concerns during the donor conversation.

Methods: A qualitative embedded multiple-case study in eight Dutch hospitals was conducted.

The interplay between organizational culture and burnout among ICU professionals: A cross-sectional multicenter study.

Purpose: Organizational culture is considered a protective factor against burnout among ICU professionals. The aim of this study is to study the association between organizational culture as a potential antecedent to previously found mediating risk factors for burnout, namely, work-life balance and moral distress.

Materials And Methods: Multicenter cross sectional study in eleven Dutch ICUs.

Bridging comic art and research: lessons from an interdisciplinary collaboration project in a palliative care context.

The Dutch graphic novel , about palliative family caregiving, is the product of an interdisciplinary collaboration between researchers and two comic artists. This paper aims to present lessons, reflections and practical recommendations for other researchers interested in adopting (comic) arts-based research methods, in which artistic methods are used as novel ways for generating, analysing, interpreting or representing research data.Our project started with the goal of translation: we aimed at representing research findings into a more accessible, visual and textual form to stimulate discussion and reflection outside academia on moral challenges in family care.

Evaluating the use of casuistry during moral case deliberation in the ICU: A multiple qualitative case study.

Intensive care unit (ICU) professionals engage in ethical decision making under conditions of high stakes, great uncertainty, time-sensitivity and frequent irreversibility of action. Casuistry is a way by which actionable knowledge is obtained through comparing a patient case to previous cases from experience in clinical practice. However, within the field of study as well as in practice, evidence-based medicine is the dominant epistemic framework.