Presenting scientifically-derived illness experiences online - Evaluation of the use of the DIPEx Germany website

Author(s):  
Martin Schultze ◽  
Martina Breuning ◽  
Markus von der Heyde ◽  
Maleen Kaiser ◽  
Jacqueline Müller-Nordhorn ◽  
...  
Author(s):  
Michael White ◽  
Rajakrishnan Rajkumar ◽  
Kiwako Ito ◽  
Shari R. Speer

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Marlies Saelaert ◽  
Heidi Mertes ◽  
Tania Moerenhout ◽  
Caroline Van Cauwenbergh ◽  
Bart P. Leroy ◽  
...  

AbstractExome-based testing for genetic diseases can reveal unsolicited findings (UFs), i.e. predispositions for diseases that exceed the diagnostic question. Knowledge of patients’ interpretation of possible UFs and of motives for (not) wanting to know UFs is still limited. This lacking knowledge may impede effective counselling that meets patients’ needs. Therefore, this article examines the meaning of UFs from a patient perspective. A qualitative study was conducted and an interpretative phenomenological analysis was made of 14 interviews with patients with an inherited retinal disease. Patients assign a complex meaning to UFs, including three main components. The first component focuses on result-specific qualities, i.e. the characteristics of an UF (inclusive of actionability, penetrance, severity and age of onset) and the consequences of disclosure; the second component applies to a patient’s lived illness experiences and to the way these contrast with reflections on presymptomatic UFs; the third component addresses a patient’s family embedding and its effect on concerns about disease prognosis and genetic information’s family relevance. The complex meaning structure of UFs suggests the need for counselling procedures that transcend a strictly clinical approach. Counselling should be personalised and consider patients’ lived illness experiences and family context.


Author(s):  
Sara M. van Bonn ◽  
Jan S. Grajek ◽  
Armin Schneider ◽  
Tobias Oberhoffner ◽  
Robert Mlynski ◽  
...  

Abstract Background Attendance teaching is the predominant teaching method at universities but needs to be questioned in the context of digital transformation. This study establishes and evaluates a method to accomplish electronic learning to supplement traditional attendance courses. Materials and methods Surgery was transmitted in real-time conditions via an online live stream from the surgical theater. Visualization was transferred from a fully digital surgical microscope, an endoscope or an environmental camera in high definition quality. Students were able to participate at home from their personal computer. After following the surgery, they participated in an online-evaluation. Results A total of 65 students participated in the live stream. The majority of students (61.54%) indicated a significant subjective increase in knowledge after participation. The majority of students (53.85%) indicated that live surgeries should be offered as a permanent component in addition to classroom teaching. Likewise, a broader offer was desired by many students (63.08%). Conclusions Live streaming of surgery is a promising approach as an alternative or supplement to traditional attendance teaching. An expansion of digital teaching can be explicitly supported on the basis of this study.


2021 ◽  
Vol 24 ◽  
pp. 100673
Author(s):  
Yu Du ◽  
Qi Zhang ◽  
Yao Huang ◽  
Hong Xu ◽  
Xiaofeng Bai ◽  
...  

2022 ◽  
Author(s):  
Andrea Zanoni ◽  
Pierre Garbo ◽  
Giuseppe Quaranta

Author(s):  
Rik Wehrens ◽  
Bethany Hipple Walters

The ability of health-care professionals to understand the lived experiences of their patients has become increasingly important but has been a difficult topic to investigate empirically because it involves two distinctive research strands: interpretative phenomenological analysis and patient–provider communication. While interpretative phenomenological analysis focuses on experiences and illness narratives of patients, but not on therapist’s understanding of those, patient–provider communication surveys focus primarily on effective forms of communication without addressing the actual illness experiences of patients. There is a need for empirical research that combines both strands to investigate not only the experiences of patients but also whether professionals are able to understand these. This study combined both strands by means of a novel research method called the Imitation Game (combined with other qualitative methods). This sociological method was developed to investigate what different social groups know of each other’s lifeworld. It focused on the important domain of eating disorder treatment to investigate whether therapists were able to understand the experiences of their patients and vice versa. This study provides insights into the domains in which therapists and patients were able to develop insights into each other’s experiential knowledge (and where they had difficulties in doing so). The findings also implicate the high potential of the Imitation Game as an interdisciplinary research method. We propose that the Imitation Game may be particularly valuable as a ‘can opener’ that enables the development of in-depth, qualitative insights into the substantive themes that matter in the lifeworlds of patients and therapists.


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