“Where do you put Jesus in your thinking?” Negotiating Belief in Book Clubs

This essay will explore the ways in which a literary author’s explicit encoding of belief impacts narrative interest. Borrowing analytical tools from the fields of narrative theory and pragmatic theology, this essay will analyze recorded book club discussions of Louise Erdrich’s novel Last Report on the Miracles at Little No Horse(2001). In particular, it will focus on the ways participants negotiated three themes they deemed contentious and ethically problematic in the novel: the descriptions of gender as performative and porous, saintliness or hagiography, and the promotion of hybrid religious practices. This content analysis of participants’ negotiations of the novel’s themes will help elucidate some of the ways in which literary discussion can provide a space for individuals to articulate and refine their personal beliefs

“Where do you put Jesus in your thinking?”: Negotiating Belief in Book Clubs

This essay will explore the ways in which a literary author’s explicit encoding of belief impacts narrative interest. Borrowing analytical tools from the fields of narrative theory and pragmatic theology, this essay will analyze recorded book club discussions of Louise Erdrich’s novel Last Report on the Miracles at Little No Horse (2001). In particular, it will focus on the ways participants negotiated three themes they deemed contentious and ethically problematic in the novel: the descriptions of gender as performative and porous, saintliness or hagiography, and the promotion of hybrid religious practices. This content analysis of participants’ negotiations of the novel’s themes will help elucidate some of the ways in which literary discussion can provide a space for individuals to articulate and refine their personal beliefs

"An invitation to think differently": a narrative medicine intervention using books and films to stimulate medical students' reflection and patient-centeredness

BACKGROUND: Narrative medicine purports to improve medical students' communication skills, self-reflection, empathy and professional development. These interpersonal skills and attitudes can facilitate more patient-centered care and positively impact patients' treatment outcomes. However, current studies report mainly on small study populations, leaving the efficacy of narrative medicine in larger study groups unknown. Therefore, this study aimed to evaluate a mandatory narrative medicine lesson in a large sample of medical students. We assessed if this narrative medicine lesson stimulated meaningful self-reflection on patient-centeredness in medical students. METHODS: All fourth-year medical students of a Dutch medical school participated in this mandatory narrative medicine lesson. The four-step activity consisted of an introductory lecture, close reading and watching of a book and film, a discussion group and a short reflective writing exercise. Students were divided over three thematic pairings (or book and film combinations): 'The doctor as a patient,' 'The mysterious brain,' and 'Until death do us part.' A mixed-methods design was used. First, we qualitatively analyzed the content of 203 essays from the reflective writing exercise. A quantitative analysis of the reflective quality was conducted using a scoring-system based on the REFLECT rubric. RESULTS: Students demonstrated reflection on a professional level and connected this to future intentions as medical practitioners, for example to use specific communication strategies or to deliver healthcare in a broader sense. They also reflected on a personal level by questioning their own worldview or beliefs. Furthermore, they stressed the importance of individual patient stories to gain understaning of patients' perspectives. Approximately half of the students showed an in-depth and authentic reflection, according to the REFLECT rubric. Additionally, reflection levels differed between book and film pairings. CONCLUSIONS: This study supports the value of narrative medicine in the medical curriculum by validating its outcomes in a larger study population and in a mandatory course. Students reflected on themes related to the principles of patient-centeredness, namely personal attitudes towards patients and the uniqueness of patient stories. In additon, the majority of students demonstrated higher levels of reflection, which suggests that this exercise contributes to self-awareness and self-reflection, important qualities for delivering patient-centered healthcare

Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership

OBJECTIVE: The James Lind Alliance (JLA) offers a method for better aligning health and care agenda's with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw attention to crucial lessons learnt when establishing such a shared research agenda. KEY ARGUMENTS: Having specific strategies and plans in place for maximising dialogic processes in a PSP can help facilitate and maintain trust, innovation and equal inclusion. CONCLUSION: Eight lessons learnt have been formulated, based on our observations and reflections on the JLA PSP and our expertise on patient participation and participatory research

Why we should not mistake accuracy of medical AI for efficiency

In the medical literature, promising results regarding accuracy of medical AI are presented as claims for its potential to increase efficiency. This elision of concepts is misleading and incorrect. First, the promise that AI will reduce human workload rests on a too narrow assessment of what constitutes workload in the first place. Human operators need new skills and deal with new responsibilities, these systems need an elaborate infrastructure and support system that all contribute to an increased amount of human work and short-term efficiency wins may become sources of long-term inefficiency. Second, for the realization of increased efficiency, the human-side of technology implementation is determinate. Human knowledge, competencies and trust can foster or undermine efficiency. We conclude that is important to remain conscious and critical about how we talk about expected benefits of AI, especially when referring to systemic changes based on single studies

Practical guidelines to build Sense of Community in online medical education

Objectives: Sense of Community (SoC) refers to the cognitive or emotional connections established between physically separated learners; it is essential for study success. The recent COVID-19 pandemic highlighted the need for practical guidelines to facilitate building a SoC in online medical preclerkship education in the Netherlands. Therefore, this qualitative study aims to (a) examine perceptions of SoC from both students’ and teachers’ perspectives in an online elective course during the COVID-19 pandemic in order to (b) provide a conceptual framework with practical guidelines to medical educators on how to build SoC in online education. Methods: The study had an exploratory qualitative design. Semi-structured focus groups with student (n = 15) and teacher (n = 5) volunteers were conducted. Participants discussed their experienced SoC using the storyline method. In addition, course developers (n = 2) were interviewed and lecturers (n = 5) wrote an experience story. Audio- and video-recordings were transcribed verbatim and both the ensuing transcripts and experience stories were analysed using an inductive thematic analysis. Results: All students experienced an increase of SoC during the eight-week course. Five themes were identified: ‘social contacts made possible by a physical campus’, ‘group dynamics’, ‘teacher influence’, ‘education format’ and ‘teachers’ Sense of Community’. The authors formulated challenges and practical guidelines on how to build SoC based on these themes. Conclusions: This exploratory qualitative study provides a conceptual framework with practical guidelines for medical educators on how to build SoC in online medical preclerkship education. These guidelines provide a valuable starting point to build SoC in online education for medical educators and students alike

Challenging behavior in children and adolescents with Dravet syndrome: Exploring the lived experiences of parents

BACKGROUND: Dravet syndrome (DS) is a monogenic syndrome associated with SCN1A mutations in the majority of patients and characterized by devastating epilepsy, that may be life-threatening. Aside from refractory seizures, core symptoms of DS include behavioral difficulties, developmental delay, cognitive impairment, and motor dysfunction. Previous DS research has mainly focused on epileptic seizures and pharmacological management and less on behavioral difficulties. This study aims to explore the lived experience of parents supporting a child with DS, with a focus on behavioral aspects. METHODS: We performed a qualitative study using focus groups and following the consolidated criteria for reporting qualitative research (COREQ) guidelines. We organized three focus groups with parents of children and adults with DS and used a pre-defined topic list of open questions, similar for each focus group to ensure comparability. The focus groups were video recorded, transcribed, and anonymized. Data were analyzed using an iterative coding process where codes were sorted into themes. Differences in coding among the researchers were discussed until a consensus was reached. RESULTS: In total, twenty parents (mothers only) participated in the study. The age of children with DS ranged between 3 to 22 years with a mean age of 11.8 years. A range of behavioral difficulties emerged from the thematic analysis. Overall, the most commonly mentioned behavioral difficulties were aggression, dangerous behavior, impulsivity, hyperactivity, routinized and compulsive habits. Our results showed different behavior per age group, with more externalizing behaviors such as aggression and impulsivity in children aged 3-13 years; and more internalizing behavior such as routinized and compulsive habits in adolescents and young adults (14-22 years). This results in a different kind of support these families need and should be acknowledged when in consult with a healthcare professional. Parents reported that challenging behavior was a source of stress and impacted negatively on their family's quality of life. Parents reported feeling alone in their search for solutions, and many explored options outside the traditional medical context. CONCLUSION: Our results suggest that the challenging behavior associated with DS leads to a huge burden of care. Healthcare professionals working with DS patients may need to develop shared decision-making strategies that take into account challenging behavior

Finding the balance between person-centred and treatment-centred discussions in advance care planning-a qualitative analysis of conversations within the MUTUAL (Multidisciplinary Timely Undertaken Advance Care Planning conversations) intervention using a narrative analysis

INTRODUCTION: Advance care planning (ACP) aims to create conditions for more person-centred care. We aimed to explore variations in person-centred care discussions and treatment-centred care discussions within ACP conversations in the Multidisciplinary Timely Undertaken Advance Care Planning (MUTUAL) intervention and how person-centred care discussions could be encouraged. The MUTUAL intervention consists of the following: (i) timely patient selection, (ii) the patient and healthcare professionals preparing for the conversation, (iii) a scripted ACP conversation in a multidisciplinary setting and (iv) documentation. METHODS: We conducted a narrative analysis of ACP conversations. A narrative summary template was created and used to analyse 18 audio-recordings. RESULTS: We noticed variations in person-centred and treatment-centred focus within the ACP conversations. We identified three important strategies that facilitated person-centred care discussions within ACP conversations. First, healthcare professionals' acceptance that ACP is an individual process. We believe it is important that healthcare professionals recognise and accept where the patient is in his or her individual ACP process; not making decisions right away can also be part of a decisional process. Secondly, exploring the underlying motivation for treatment wishes can give insights into patient's wishes, values and needs. Lastly, healthcare professionals who demonstrated an adaptive, curious and engaged attitude throughout the ACP process achieved more person-centred ACP conversations. This coincided with elaborating on the patient's emotions, fears and worries. CONCLUSION: Person-centred and treatment-centred focus varied within the ACP conversations in the MUTUAL intervention. Certain strategies by healthcare professionals facilitated a more person-centred focus

Meaningful public engagement in the context of open science: reflections of early and mid-career academics

How is public engagement perceived to contribute to open science? This commentary highlights common reflections on this question from interviews with 12 public engagement fellows in Utrecht University’s Open Science Programme in the Netherlands. We identify four reasons why public engagement is an essential enabler of open science. Interaction between academics and society can: (1) better align science with the needs of society; (2) secure a relationship of trust between science and society; (3) increase the quality and impact of science; and (4) support the impact of open access and FAIR data practices (data which meet principles of findability, accessibility, interoperability and reusability). To be successful and sustainable, such public engagement requires support in skills training and a form of institutionalisation in a university-wide system, but, most of all, the fellows express the importance of a formal and informal recognition and rewards system. Our findings suggest that in order to make public engagement an integral part of open science, universities should invest in institutional support, create awareness, and stimulate dialogue among staff members on how to ‘do’ good public engagement