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.

"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.

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.

Integrating artificial intelligence in pathology: a qualitative interview study of users' experiences and expectations.

Recent progress in the development of artificial intelligence (AI) has sparked enthusiasm for its potential use in pathology. As pathology labs are currently starting to shift their focus towards AI implementation, a better understanding how AI tools can be optimally aligned with the medical and social context of pathology daily practice is urgently needed. Strikingly, studies often fail to mention the ways in which AI tools should be integrated in the decision-making processes of pathologists, nor do they address how this can be achieved in an ethically sound way. Moreover, the perspectives of pathologists and other professionals within pathology concerning the integration of AI within pathology remains an underreported topic. This article aims to fill this gap in the literature and presents the first in-depth interview study in which professionals' perspectives on the possibilities, conditions and prerequisites of AI integration in pathology are explicated. The results of this study have led to the formulation of three concrete recommendations to support AI integration, namely: (1) foster a pragmatic attitude toward AI development, (2) provide task-sensitive information and training to health care professionals working in pathology departments and (3) take time to reflect upon users' changing roles and responsibilities.

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.

Developing new ways to listen: the value of narrative approaches in empirical (bio)ethics.

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, 'genres' in medicine and dominant discourses in relation to empirical research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to 'listen (and read) in new ways'. We then show how this approach was applied in the first author's research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a 'diagnostic', rather than a 'problem-solving', mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics' normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics.

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.

Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit.

AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them. RESULTS: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP. CONCLUSION: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.