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

The Dutch graphic novel Naasten, 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. This was inspired by comics' hypothesised potential to show complex and embodied experiences, thus enabling more understanding in readers and offering powerful science communication tools. Although this goal of translation was realised in our project, we learnt along the way that the project could have benefited from a more explicit focus on interdisciplinarity from the start and by monitoring the interdisciplinary learning opportunities throughout the project. The following issues are important for any art-research collaboration: (1) an interest in and acknowledgement of each other's (potentially diverging) aims and roles: all parties should-from the start-commit themselves to interdisciplinary collaboration and to exploring the added value of using each other's methods, thereby finding a common methodological ground and language; (2) a continuous discussion of the sometimes contrasting approaches between artists and researchers: differences in using theory and story may result in different criteria for creating good art. When balancing scientific and aesthetic aims, the trustworthiness of the art work should remain an important criterion; (3) an awareness of the potential of interdisciplinary collaboration to offering new perspectives on one's scientific data collection and analysis, for example, providing other conceptualisations or indicating blind spots, provided that artists are involved in the early phases of research.

How clinicians discuss patients' donor registrations of consent and presumed consent in donor conversations in an opt-out system: a qualitative embedded multiple-case study.

BACKGROUND: The Netherlands introduced an opt-out donor system in 2020. While the default in (presumed) consent cases is donation, family involvement adds a crucial layer of influence when applying this default in clinical practice. We explored how clinicians discuss patients' donor registrations of (presumed) consent in donor conversations in the first years of the opt-out system. METHODS: A qualitative embedded multiple-case study in eight Dutch hospitals. We performed a thematic analysis based on audio recordings and direct observations of donor conversations (n = 15, 7 consent and 8 presumed consent) and interviews with the clinicians involved (n = 16). RESULTS: Clinicians' personal considerations, their prior experiences with the family and contextual factors in the clinicians' profession defined their points of departure for the conversations. Four routes to discuss patients' donor registrations were constructed. In the Consent route (A), clinicians followed patients' explicit donation wishes. With presumed consent, increased uncertainty in interpreting the donation wish appeared and prompted clinicians to refer to "the law" as a conversation starter and verify patients' wishes multiple times with the family. In the Presumed consent route (B), clinicians followed the law intending to effectuate donation, which was more easily achieved when families recognised and agreed with the registration. In the Consensus route (C), clinicians provided families some participation in decision-making, while in the Family consent route (D), families were given full decisional capacity to pursue optimal grief processing. CONCLUSION: Donor conversations in an opt-out system are a complex interplay between seemingly straightforward donor registrations and clinician-family interactions. When clinicians are left with concerns regarding patients' consent or families' coping, families are given a larger role in the decision. A strict uniform application of the opt-out system is unfeasible. We suggest incorporating the four previously described routes in clinical training, stimulating discussions across cases, and encouraging public conversations about donation.

Practice and challenges for organ donation after medical assistance in dying: A scoping review including the results of the first international roundtable in 2021.

The procedure combining medical assistance in dying (MAiD) with donations after circulatory determination of death (DCDD) is known as organ donation after euthanasia (ODE). The first international roundtable on ODE was held during the 2021 WONCA family medicine conference as part of a scoping review. It aimed to document practice and related issues to advise patients, professionals, and policymakers, aiding the development of responsible guidelines and helping to navigate the issues. This was achieved through literature searches and national and international stakeholder meetings. Up to 2021, ODE was performed 286 times in Canada, the Netherlands, Spain, and Belgium, including eight cases of ODE from home (ODEH). MAiD was provided 17,217 times (2020) in the eight countries where ODE is permitted. As of 2021, 837 patients (up to 14% of recipients of DCDD donors) had received organs from ODE. ODE raises some important ethical concerns involving patient autonomy, the link between the request for MAiD and the request to donate organs and the increased burden placed on seriously ill MAiD patients.

Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: A qualitative study.

BACKGROUND: Family caregiving at home is highly important for people receiving palliative treatment, but also a complex experience, subject to implicit social expectations. This study empirically explored the claim that comics benefit palliative care practice, through evaluating a graphic novel's value as an aid in supportive conversations with family caregivers. AIM: To identify facilitators and barriers in using Naasten (Loved ones), a Dutch research-based graphic novel about family caregivers providing care at the end-of-life. DESIGN: Qualitative study, following thematic content analysis. PARTICIPANTS: Three focus groups with family caregiver consultants, palliative care volunteers, and healthcare professionals (total N = 23) who supported family caregivers; and individual telephone interviews with family caregivers to whom the book was presented (N = 4). RESULTS: Barriers and facilitators related to: (1) the family caregiver, (2) impact on the family caregiver, (3) impact on the conversation between the person who provides support and the family caregiver, (4) their relationship, and (5) the person who provides support. Naasten was reported as recognizable and supportive, and powerful in raising emotions, awareness and conversation. Barriers concerned the book's impact due to its style and guidance of a conversation, and doubts about its surplus-value. CONCLUSIONS: Emotionally impactful comics may support bereaved family caregivers, but should be introduced with care among current family caregivers, for example, ensuring a right fit, introduction, and follow-up-while taking into account a caregiver's individual situation, needs, abilities, and affinity with the medium. Comics are preferably used in educational settings, contributing to professional awareness and tailored support of family caregivers.

What is it like to organize a large-scale educational event for fellow students? A qualitative exploration of student participation in curriculum design.

BACKGROUND: Although students are increasingly involved in curriculum design, empirical research on practices of actual student participation is sparse. The purpose of this study is to explore the experiences of students who collaborated in the organizing committee of a large-scale educational event, the Radboud Student Conference (RSC), for fellow students. METHODS: We conducted three focus group interviews, in which 17 (bio) medical students of three different organizing teams shared their experiences regarding the organization of the large-scale teaching event. The analysis was conducted using thematic content analysis, in which the codes and codebook were constructed on the basis of the data. RESULTS: The following four themes were derived from the data. 1) Collaboration, which concentrated on fellow students, teachers who were involved as supervisors, and persons outside the organizing team such as caterers, educational support office members, lecturers, physicians and researchers. 2) Planning and division of labor, with students experiencing a mutual dependence and noticing a gradual improvement of their skills. 3) Freedom implies responsibility, which indicted that students experienced a significant freedom to develop the RSC week, but at the same time felt the responsibility to deliver a successful final week of the academic year. 4) Personal development, where students mentioned the opportunity to practice skills that differed from standard (bio) medical electives. CONCLUSIONS: We conclude that (bio) medical students are capable of bearing the responsibility to organize a large-scale educational event. Organizing the RSC was an educational experience in the form of cooperative and experiential learning which contributed to students' personal development. Organizing the event gave students both a sense of freedom and the responsibility to succeed. Supervision of faculty members seemed a prerequisite, and tended to be supportive rather than guiding.

Frames and counter-frames giving meaning to palliative care and euthanasia in the Netherlands.

BACKGROUND: Based on the case of palliative care and euthanasia in the Netherlands, this paper presents an analysis of frames and counter-frames used in the ongoing public debate about these two intertwined topics. Each (counter)frame presents a cultural theme that can act as a prism to give meaning to palliative care and/or euthanasia. Each frame comprehends a different problem definition, consequences and policy options. Typical word choices and metaphors are identified that can evoke these frames and the underlying reasoning. The frames do not belong to a specific stakeholder but a pattern can be seen in their use that is related to interests and ideology. METHODS: An inductive framing analysis was conducted of 2,700 text fragments taken from various Dutch newspapers, websites of stakeholders and policy documents in the period 2016-2018. After an extensive process of thematic coding, axial coding, selective coding and peer review seven frames and seven counter-frames about palliative care and euthanasia were constructed. Fifteen experts in the field of palliative and/or end-of-life care commented on the overview during a member check. RESULTS: Two frames about palliative care were constructed: the Fear of death frame, which stresses the hopeless 'terminality' of palliative care and the Heavy burden frame, in which palliative care is too big a responsibility for the relatives of the patient. In addition, two counter-frames were constructed: palliative care as a contributor to Quality of life and Completion. With regard to euthanasia, five frames were identified that lead to a problematising definition: Thou shalt not kill, Slippery slope, Lack of willpower, I am not God, and Medical progress. Five counter-frames offer a non-problematising definition of euthanasia in the debate: Mercy, Prevention, Triumph of reason, Absolute autonomy, and Economic utility thinking. CONCLUSIONS: The debate in the Netherlands on euthanasia and palliative care is characterized by a plurality of angles that goes beyond the bipolar distinction between the pros and cons of euthanasia and palliative care. Only with an overview of all potential frames in mind can an audience truly make informed decisions. The frame matrix is not only useful for policy makers to know all perspectives when joining public debate, but also to health care workers to get into meaningful conversations with their patients and families.

Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context.

BACKGROUND: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings. METHODS: From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. RESULTS: Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. CONCLUSIONS: Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot - and perhaps should not - simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

Women desiring less care than recommended during childbirth: Three years of dedicated clinic.

BACKGROUND: Some women decline recommended care during pregnancy and birth. This can cause friction between client and provider. METHODS: A designated outpatient clinic was started for women who decline recommended care in pregnancy. All women who attended were analyzed retrospectively. The clinic used a systematic multidisciplinary approach. During the first visit, women told their stories and explained the reasoning behind their birth plan. The second visit was used to present the evidence underpinning recommendations and attempt to reach a compromise if care within recommendations was still not acceptable to the woman. During the third visit, a final birth plan was decided on. RESULTS: From January 1, 2015, until December 31, 2017, 55 women were seen in the clinic, 29 of whom declined items of recommended care during birth and were included in the study. After discussions had been completed, 38% of birth plans were within recommendations, 38% were a compromise, in which both the woman and the care provider had made certain concessions, and 24% did not reach an agreement and delivered with another provider either at home or elsewhere. All maternal and perinatal outcomes were good. CONCLUSIONS: Using a respectful and systematic multidisciplinary approach, in which women feel heard and are invited to explain their motivations for their birth plans, we are able to arrive at a plan either compatible with or much closer to recommendations than the woman's initial intentions in most cases, thereby preventing negative choices.

Feeling an outsider left in uncertainty - a phenomenological study on the experiences of older hospital patients.

This paper starts from a care ethical perspective on care and reports on a phenomenological study into older patients' experiences of hospitalisation. Although hospital care for older patients is at the centre of attention, questions what is at stake and what defines quality of care are rarely discussed with a view to the perspective of older patients themselves. The qualitative observational method of shadowing was used. Ten patients of 75 years old or older were shadowed from admission until discharge. The reflective lifeworld approach, based on phenomenological philosophy, was used to analyse the collected data. For the older patients included in the study, the essential meaning of hospitalisation can be described as feeling an outsider left in uncertainty. The word 'left' reveals how hospitalisation is experienced as a solitary struggle with various uncertainties that are related both to the hospital environment and to the patient's personal situation. The essential meaning is composed of the following three constituents: (i) staying in an inhospitable place, (ii) feeling constrained and (iii) experiencing disruption. The busy walking back and forth of care professionals and the functional character of involvement, restrain older patients from participating and make them feel abandoned. Feeling constrained reveals the feelings brought on by the ageing body which are emphasised by hospitalisation but often neglected by hospital staff. The failure of healthcare professionals to recognise and respond to who older patients are aside from their illness exacerbate the experience of disruptions. To improve care, hospital staff must be more sensitive to older patients' uncertainties. Also, hospital staff should provide older patients with understandable information and explanation which besides offering patients the possibility to feel involved, meets their need for recognition.

Patient Participation in Hospital Care: How Equal is the Voice of the Client Council?

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a client council in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also 'the condition of equal voice'.

Why frailty needs vulnerability: A care ethical perspective on hospital care for older patients.

The vulnerability of older hospital patients is increasingly understood in physical terms, often referred to as frailty. This reduces their vulnerability to the functioning body regardless of the psycho-socio-cultural context they are in, and it ignores the role of the hospital environment. This paper starts from a care ethical perspective on care and uses insights from empirical work that shows that hospitalization of older patients is characterized by experiences of uncertainty that give rise to feelings of vulnerability. This paper presents a model that clarifies how vulnerability occurs in the interplay between the embodied subject, others, daily life and the hospital, and shows its dynamic and relational nature. Our complementary perspective of vulnerability is vital for nursing practice in that it starts from the situatedness of the older patient and not only points at what is missing but also at what is of significance to the older patient. Taking into account this perspective helps improving relational care.

Participating in a world that is out of tune: shadowing an older hospital patient.

Hospitalization significantly impacts the lives of older people, both physically and psychosocially. There is lack of observation studies that may provide an embodied understanding of older patients' experiences in its context. The aim of this single case study was to reach a deeper understanding of one older patient's lived experiences of hospitalization. The study followed a phenomenological embodied enquiry design and the qualitative observation method of shadowing was used. In April 2011, one older patient was shadowed for 7 days, 5-7 h per day. To facilitate understanding in the reader the experiences are first presented in a story and subsequently analyzed by means of the lifeworld framework. The findings show that hospitalization is experienced as ambiguous safety, disconnected time, the feeling of being partially involved, and the struggle to re-attune to the body.

Matters of concern: a qualitative study of emergency care from the perspective of patients.

STUDY OBJECTIVE: A key to improving the quality of emergency care is improvement of the contact between patient and emergency department (ED) staff. We investigate what patients actually experience during their ED visit to better understand the patterns of relationships among patients and health care professionals. METHODS: This was an ethnographic study. We conducted observations at the ED of a large general teaching hospital. Patients were enrolled in the study on the basis of convenience sampling. We thoroughly analyzed 16 cases in a grounded theory approach, using the constant comparative methods (ie, starting the analysis with the collection of data). This approach enabled us to conceptualize the experiences of patients step by step, using the ethnographic data to refine and test the theoretical categories that emerged. RESULTS: Our data show that patients at the ED continuously and actively labor to deal with their disorder, its consequences, and the situation they are in. Characteristics of these "patient concerns" indicate a certain trouble, have a personal character, impose themselves with a certain urgency, and require patient effort. We have established a qualitative taxonomy of 5 categories of patient concerns: anxiety, expectations, care provision, endurance, and recognition. CONCLUSION: Diligence for patient concerns enables ED staff to have a fruitful insight into patients' actual experience. It offers significant clues to improving relationship building in emergency care practice between patients and health care professionals.

Why shared decision making is not good enough: lessons from patients.

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients' lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives.This will contribute to making medical decisions in a good and caring manner, taking into account the lived experience of being ill.

[Family conversations about tissue donation: much variation, room for improvement]. / Weefseldonatiegesprekken.

This article presents a small interview study with non-intensive care physicians concerning their experiences with tissue donation conversations with families of deceased potential donors.

Giving voice to vulnerable people: the value of shadowing for phenomenological healthcare research.

Phenomenological healthcare research should include the lived experiences of a broad group of healthcare users. In this paper it is shown how shadowing can give a voice to people in vulnerable situations who are often excluded from interview studies. Shadowing is an observational method in which the researcher observes an individual during a relatively long time. Central aspects of the method are the focus on meaning expressed by the whole body, and an extended stay of the researcher in the phenomenal event itself. Inherent in shadowing is a degree of ambivalence that both challenges the researcher and provides meaningful insights about the phenomenon. A case example of a phenomenological study on the experiences of elderly hospital patients is used to show what shadowing yields.

Putting ICU triage guidelines into practice: A simulation study using observations and interviews.

BACKGROUND: The COVID-19 pandemic has prompted many countries to formulate guidelines on how to deal with a worst-case scenario in which the number of patients needing intensive care unit (ICU) care exceeds the number of available beds. This study aims to explore the experiences of triage teams when triaging fictitious patients with the Dutch triage guidelines. It provides an overview of the factors that influence decision-making when performing ICU triage with triage guidelines. METHODS: Eight triage teams from four hospitals were given files of fictitious patients needing intensive care and instructed to triage these patients. Sessions were observed and audio-recorded. Four focus group interviews with triage team members were held to reflect on the sessions and the Dutch guidelines. The results were analyzed by inductive content analysis. RESULTS: The Dutch triage guidelines were the main basis for making triage decisions. However, some teams also allowed their own considerations (outside of the guidelines) to play a role when making triage decisions, for example to help avoid using non-medical criteria such as prioritization based on age group. Group processes also played a role in decision-making: triage choices can be influenced by the triagists' opinion on the guidelines and the carefulness with which they are applied. Intensivists, being most experienced in prognostication of critical illness, often had the most decisive role during triage sessions. CONCLUSIONS: Using the Dutch triage guidelines is feasible, but there were some inconsistencies in prioritization between teams that may be undesirable. ICU triage guideline writers should consider which aspects of their criteria might, when applied in practice, lead to inconsistencies or ethically questionable prioritization of patients. Practical training of triage team members in applying the guidelines, including explanation of the rationale underlying the triage criteria, might improve the willingness and ability of triage teams to follow the guidelines closely.

[Using pandemic guidelines in simulated triage sessions. Preliminary observations and lessons learned]. / Pandemiedraaiboeken in gesimuleerde triagesessies.

In Spring 2020, the Netherlands appeared to be poorly prepared for 'code black': a situation in which Intensive Care Unit (ICU) bed shortage would be a reality. Guidelines were developed with medical and non-medical considerations for ICU triage. In recent months, we organized eight simulated triage sessions in four hospitals, as part of a research project. We asked triage teams to prioritize cases of patients in need of ICU care, aided by the guidelines. Data are still being analyzed; here we share some preliminary observations and lessons learned. In our sessions, it was striking how much triage depends on the input of the intensivist, especially when it comes to crucial expertise regarding prognosis and length of stay. Differences in prioritization predominantly depended on different estimations of prognosis and length of stay. The guidelines provide direction, but prioritizing ICU patients can be mentally burdensome for triagists. This requires support and aftercare for triage teams.

Learning shared decision-making in clinical practice.

OBJECTIVE: To explore how shared decision-making (SDM) is learned in clinical practice according to professionals and patients. METHODS: Focus group and individual interviews with interns (n = 9), residents (n = 12), senior physicians (n = 13), and (former) patients and relatives (n = 13) in fertility care and intensive care. RESULTS: Patients and professionals identified barriers and drivers for SDM related to patient, caregiver, and context. Participants agreed: the nuances of SDM are learned in practice, not during undergraduate medical education. Through observing and copying from other professionals, interns and residents describe building their personal "repertoire" of SDM skills, knowledge, and attitude. Professionals indicated it was helpful to see many different examples - both good and bad - of physicians in action. CONCLUSION: Learning SDM is a complicated task for both students and professionals in healthcare. Relevant factors are the involvement of patients, the role of informal learning processes and role models, and the importance of reflective practice. PRACTICE IMPLICATIONS: Learning SDM in practice requires 1) measures to lessen pressures on a meso and macro level that hinder SDM in practice, 2) inventive and precise training and education and paying explicit attention to informal learning processes in clinical practice and learning through role models.