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Nursing Ethics has published several pleas for care ethics and/or relationality as the most promising ethical foundation for midwifery philosophy and practice. In this article, we stand by these calls, contributing to them with the identification of the structural form of violence that a care ethical relational approach to reproductive care is up against: that of “maternal separation”. Confronted with reproductive and obstetric violence globally, we show that a hegemonic racialized, instrumentalized, and individualized conception of pregnancy is responsible for a severance of relationalities that are essential to safe reproductive care: (1) the relation between the person and their child or reproductive capabilities; and (2) the relation between the pregnant person and their community of care. We pinpoint a separation of the maternal relation in at least two discursive domains, namely, the juridical-political and the ethical-existential. Consequently, we plea for a radical re-imagination of maternal relationality, envisioning what care ethical midwifery, including abortion care, could be.

Background Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice. Aim To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home. Methods This interpretative synthesis consists of a thematic analysis and care ethical interpretation of issues regarding family involvement from the perspective of families in nursing homes reported in literature. Findings This study reveals the complexities of family involvement in the nursing home by drawing attention to the moral dimension of the issues experienced by families, as seen through the theoretical lens of Baier’s care ethical concept of trust as a theoretical lens. The synthesis of literature resulted in a thematic categorization of issues reported by families, namely, family–staff relationship, psychosocial factors and organizational circumstances. The care ethical interpretation of the synthesis of literature showed that the concept of trust resonates with all reported issues. Trust evolves over time. Early issues are mostly related to getting to know each other. Secondly, families want to experience that staff are competent and of good will. Difficult feelings families may have, such as guilt or loneliness, and dealing with the deterioration of the loved one puts families in a vulnerable position. This power imbalance between family and staff impedes a trusting relationship. Issues related to organizational circumstances, such as understaffing, also undermine families' trust in staff and the nursing home. Discussion and conclusion Baier’s theoretical concept of trust provides a deeper insight into the moral dimension of family involvement from the perspective of families in the nursing home. To improve family involvement in practice, we propose to aim future interventions at reinforcing trust in the relationship between family and staff as well as in the organizational context in which these care relationships occur.

Background: Maintaining collaborative research relations is challenging, as shown by a range of personal accounts of researchers with experiential expertise, emerging from reflected lived experiences within medical or social care institutions.Objective: In contrast, there is a shortage of narratives of researchers without experiential expertise, rendering their specific perspectives largely unaccounted for – a gap that is addressed in this paper. Methods: The interpretative method of “interactive interviewing” is used to systematically reflect on how two researchers without experiential expertise perceived personal and emotional unsettlement in collaborative projects in the fields of Mental Health (MH) and Intellectual and Developmental Disability (IDD).Results: Four cases are presented to illustrate and advocate the value of unsettling encounters in collaborative research. Underlying is the ethical and methodological position that collaborative research is primarily characterized by its potential to unsettle the relations between the people and parties involved. This position derives from the critical autobiography of the disability studies scholar Kathryn Church, and contrasts to the widely held assumption that collaborative research is largely characterized by a set of distinct methods or techniques. Discussion: Some of the epistemic and methodological gains and challenges of approaching collaborative research as a means to facilitate and reflect on unsettling encounters are presented and discussed in relation to overarching theoretical and normative-ethical arguments. Community Contribution: This paper purposefully lacks any form of involvement, explicitly focussing on the perspectives and experiences of researchers without experiential expertise in the context of collaborative research relationships.

Interventions by states, civil society organizations, and individual citizens to support asylum seekers are often seen and justified as acts of rescue. The rescue frame suggests that any action that improves the precarious situation of refugees is a positive achievement. Commendable as it is to take responsibility for people in need, to use a rescue logic to assess support for refugees is problematic on three levels. Politically, measures that bring positive outcomes for individual asylum seekers can at the same time enable the continuation of an unjust status quo that is to the disadvantage of many others. At the level of civil society, the rescue logic makes it easier for civil society organizations to temper the intensity of their engagement with refugees with the argument that it would be unfair to expect that this support would come at the expense of their own interests, political status, or internal cohesion. Finally, by taking responsibility for asylum seekers, citizens might simultaneously reinforce their privileged position, and thus strengthen citizenship regimes that sustain the very exclusion of refugees they seek to protest. Based on the care ethical work of Marcia Morgan, an approach to refugee care is developed that goes beyond Good Samaritanism and privileged responsibility. Through aesthetic care, democratic listening, and political imagination, citizens and refugees can jointly develop acts of contestation that not only bring tactical gains, but also actually contribute to political transformation.

Siblings' interactions and shared experiences influence their perceptions of quality of life. Recently, research about siblings of children with intellectual and developmental disabilities has been significantly expanded but data from Southern European countries is still missing. This research was carried out in Catalonia (northeast Spain) a region in the Mediterranean area with its own shared culture, language and traditions that equally embraces an important diversity of ethnicities and cultures. The main aim was to collect siblings' perceptions on quality of life from siblings' own voices. Semi-structured interviews were conducted with 14 siblings aged 5–11 years old and thematically analyzed using the following domains: joint activities; mutual understanding; private time; acceptance; forbearance; trust in well-being; exchanging experiences; social support; and dealing with the outside world. Siblings reported a variety of experiences in relation to having a brother or a sister with intellectual and developmental disabilities (I/DD), including unique characteristics of their quality of life perceptions. There were also some common factors amongst the siblings' experiences, such as the importance of being able to communicate properly with their brothers or sisters with I/DD. It emerged that having their own time with their parents was an important factor in their own development. This research echoes some siblings' beliefs that society needs to provide a conscious revision of values and ideas regarding disability. Implications for research and practice are described.

Based on autoethnographic material and feminist theory, such as care ethics and epistemic (in)justice studies, we expose four forms of epistemic injustice in reproductive care in the Netherlands: hermeneutical injustice, testimonial injustice, willful hermeneutical ignorance, and gaslighting. These forms of injustice rest on deeply rooted systems and their associated assumptions and on practices that produce and reproduce this injustice. We draw upon care ethics to suggest alternative practices that may counter these epistemic forms of obstetric violence, by explicating the (embodied) voice of the care receiver in reproductive care.

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.

Context Religion and spirituality (r/s) are important resources in coping with cancer. However, there are aspects of r/s, such as religious and spiritual struggles, found to be associated with poorer outcomes. A new measure has been adapted from the Religious and Spiritual Struggles Scale (RSS) to assess r/s struggles: the RSS-14. This concise measure allows for the assessment of multiple types of r/s struggles for people from different religious backgrounds or none. Objectives The aim of the present study was to examine the prevalence, predictors and correlates of r/s struggles as measured by the RSS-14 and its subdomains in a cancer population receiving palliative care. Methods Data were collected from six outpatient palliative care services across the US. Inclusion criteria for patients were age 55 or older with a cancer diagnosis. In addition to demographic and r/s characteristics, study measures included the Edmonton Symptom Assessment Scale (ESAS), the Patient Dignity Inventory (PDI) and the Quality of Life at the End of Life (QUAL-E). Results The study included 331 participants. Some r/s struggle was reported by 66%, moderate to high struggle for at least one item was reported by 20% of the patients. In bivariate analyses, r/s struggle was associated with greater symptom burden, greater dignity-related problems and poorer quality of life; in multivariable analyses, dignity-related problems remained a predictor of total r/s struggle. Conclusion R/S struggles may compromise well-being for cancer patients receiving palliative care. Clinicians should consider periodic screening for r/s struggles and referrals for spiritual care if indicated.

BackgroundKetamine and its enantiomer esketamine represent promising new treatments for treatment-resistant depression (TRD). Esketamine induces acute, transient psychoactive effects. How patients perceive esketamine treatment, and which conditions facilitate optimal outcomes, remains poorly understood. Understanding patient perspectives on these phenomena is important to identify unmet needs, which can be used to improve (es)ketamine treatments.AimsTo explore the perspectives of TRD patients participating in “off label” oral esketamine treatment.Materials and methodsIn-depth interviews were conducted with 17 patients (11 women) after a six-week, twice-weekly esketamine treatment program, and subsequently after six months of at-home use. Interviews explored participants’ perspectives, expectations, and experiences with esketamine treatment. Audio interviews were transcribed verbatim and analysed following an Interpretative Phenomenological Analysis (IPA) framework.ResultsKey themes included overwhelming experiences; inadequate preparation; letting go of control; mood states influencing session experiences; presence and emotional support, and supportive settings. Patients’ attempts to let go and give into vs. attempts to maintain control over occasionally overwhelming experiences was a central theme. Multiple factors influenced patients’ ability to give into the experience and appeared to impact their mood and anxiety about future sessions, including level of preparation and education, physical and emotional support, and setting during the session.ConclusionBetter preparation beforehand, an optimized treatment setting, and emotional and psychological support during (es)ketamine sessions can help patients to “let go” and may lead to better quality of care and outcomes. Recommendations to improve quality of patient care in (es)ketamine treatment are provided, including suggestions for the training of nurses and other support staff.

• In de context van beschermde zorgsettingen is het soms lastig om vanuit 'kaleidoscopisch' perspectief te kijken naar situaties van moeilijk verstaanbaar gedrag, die geregeld vastlopen. • Met Project WAVE hebben we 2,5 jaar geprobeerd hier ruimte voor te creëren, door mensen van buiten de zorg langdurig mee te laten kijken. In totaal liepen er twaalf trajecten bij zes deelnemende zorgorganisaties. • Logischerwijs waren de bevindingen per traject sterk situationeel en (inter)persoonlijk gekleurd, maar we zagen wel drie rode draden: 1. Balanceren in contact tussen professionals en familieleden, 2. Niet alleen formele kennis maar ook persoonlijke talenten benutten, en 3. Meer ruimte voor pieken en dalen. • Voor alle betrokkenen was het gedurende het hele traject zoeken naar hoe met elkaar op te blijven trekken, maar het bleek zeker te kunnen leiden tot een verrijking van kijken, denken en handelen in situaties van moeilijk verstaanbaar gedrag.

Objectives Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists. Methods A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers. Results All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization. Significance of results Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.

Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time.

In long-term care for people with dementia, person-centred care (PCC) is widely promoted as an approach that contributes to the well-being of persons in psycho-geriatric care. The goal of PCC is to acknowledge the personhood of residents and to indicate the responsibility of others to ensure the personhood of persons with dementia. In 2016 and 2018, qualitative empirical research was conducted with the purpose to enhance PCC and meaningful care. Five Dutch nursing homes and a total of eight communities of practice participated in the research project ‘People and their Stories’. The aim of this project was to strengthen the hermeneutic competence of care practitioners, with a focus on informal everyday interpersonal interactions between residents and care professionals. This article highlights how care professionals, by enhancing their hermeneutical competence, can do justice to the unique personhood of residents in everyday care practice. Three distinguished features for strengthening the hermeneutic competence of care professionals were formulated: respectful curiosity as a prerequisite, being able to differentiate between fact and meaning, and the awareness of own perspectives and assumptions.

Key Points Question What are the patient characteristics and circumstances associated with the request for euthanasia and physician-assisted suicide (EAS) in cases of multiple geriatric syndromes as reported in the case summaries of the Dutch Regional Euthanasia Review Committees? Findings In this qualitative study of 53 case summaries published by the Dutch Regional Euthanasia Review Committees, a combination of multiple geriatric syndromes, such as visual impairment, hearing loss, pain, and chronic tiredness, may have led, in most cases, to an accumulation of suffering on multiple dimensions, resulting in a request for EAS because of unbearable suffering. Meaning This study suggests that unbearable suffering leading to a request for EAS in older persons without a life-threatening condition is often associated with a combination of medical, social, and existential issues., Importance The Dutch Regional Euthanasia Review Committees (RTEs) reviewed and reported an increasing number of cases of euthanasia and physician-assisted suicide (EAS) requested by older people with multiple geriatric syndromes (MGS). Knowledge of the characteristics of cases of EAS for MGS is important to facilitate societal debate and to monitor EAS practice. Objective To examine the accumulation of patient characteristics, geriatric syndromes, and other circumstances as reported in the case summaries of the RTEs that led to unbearable suffering associated with a request for EAS and to analyze the RTEs’ assessments of these cases of EAS. Design, Setting, and Participants A qualitative content analysis was conducted of all case summaries filed from January 1, 2013, to December 31, 2019, under the category MGS and published in a national open access database. These case summaries were selected by the RTEs from the total of 1605 reported cases of EAS in the category MGS. Results The RTEs published 53 cases (41 [77%] female) under the category MGS. A total of 28 patients (53%) had always perceived themselves as independent, active, and socially involved. None of the patients suffered from life-threatening conditions. Multiple geriatric syndromes, such as visual impairment (34 cases [64%]), hearing loss (28 cases [53%]), pain (25 cases [47%]), and chronic tiredness (22 cases [42%]), were common. The request for EAS was often preceded by a sequence of events, especially recurrent falls (33 cases [62%]). Although physical suffering could be determined in all cases, the case descriptions found that suffering occurred on multiple dimensions, such as the loss of mobility (44 [83%]), fears (21 [40%]), dependence (23 [43%]), and social isolation (19 [36%]). Conclusions and Relevance This qualitative study suggests that an accumulation of geriatric syndromes leading to a request for EAS is often intertwined with the social and existential dimension of suffering. This leads to a complex interplay of physical, psychological, and existential suffering that changes over time., This study from the Netherlands looks at the association between having multiple geriatric syndromes and requesting euthanasia or physician-assisted suicide.

Zorgen is een alledaagse bezigheid. Iedereen doet het. Iedereen doet het en is ervan afhankelijk. Velen doen dit als professional: zij zijn gericht op zorgen voor mensen in nood. Door te zorgen, draag je bij aan de samenleving. Maar de samenleving zet zorgen ook onder druk, door politieke keuzes en morele opvattingen. Zorgethiek is een vorm van ethiek die over de alledaagse en professionele zorgverlening nadenkt, en ook de politieke inbedding ervan kritisch bekijkt. Wat is het goede om te doen voor deze concrete persoon, in deze concrete situatie ? Hebben we genoeg mensen en middelen om het goede te doen? En hebben we de informele en professionele zorg op een rechtvaardige en zorgende manier georganiseerd ? Dit boek begint bij de eigen ervaringen van wat goed en niet goed is. In het tweede deel wordt vanuit deze ervaringen een eigen zorgethische visie ontwikkeld met behulp van Joan Tronto's zorgethiek. Het derde deel is praktisch. Hierin wordt een methode voor ethische reflectie gepresenteerd die past bij de centrale inzichten van zorgethiek en die in onderwijs en zorgpraktijken haar meerwaarde heeft bewezen. Het boek sluit af met een beschrijving hoe zorgethische reflectie kan worden ingebed in instellingsbeleid en de context van zorginstellingen.

The original adage of the movement of people with disabilities ‘Nothing about us without us’ is fortunately more and more adopted in the research world. There is, for example, increasing recognition of the importance and value of actively involving people with intellectual disabilities in research projects on topics that are relevant to them. In a current doctoral research project, a co-researcher with an intellectual disability was recruited to work together with the doctoral researcher. Now that this project is nearing completion, it is time to look at some aspects of their collaboration and see what we can learn from this process. In several (joint) meetings, the researchers reflected on their personal experiences with working and researching together. Our reflections are presented using three overarching themes: preparations for the collaboration, collaborating as a complex process, and conducting research together. The discussion focuses on what can be inferred from these personal experiences with regard to the following three topics: how inclusive research can be organised best, the possible benefits of the collaboration for the researchers involved, and the possible impact of the collaboration on the quality of the research.

Background Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method Semi-structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution-oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations.

In this study, we report on a two-year experience of inclusive participative action and social design research consisting of intensive collaboration between social workers, people with intellectual disabilities and researchers. Action research and design research are attunable and lend themselves to an inclusive approach aimed at knowledge development and change in practice. Social workers and people with intellectual disabilities were involved in a community of development. They became owners of the subject matter and the answers and solutions they designed. We conclude that an inclusive approach lends itself well to combining or even merging action research and social design research. Inclusive participative action and social design research cannot be standardized since it contains a particularly emergent process. Hence, it requires flexibility and creativity in finding ways to create an inclusive process of co-creation.

Service organizations for people with intellectual and developmental disabilities (IDD) increasingly use telecare applications to improve their services. This study explored the usefulness of offering the 24/7 online support service DigiContact within a broader mix of professional services for people with IDD living independently. We employed a qualitative multiple case study, in which the cases of nine online support users were reconstructed through semistructured interviews with both support users and their case workers. Thematic analysis showed that online support was used as an addition to regular onsite support to enable a more tailor-made delivery of professional supports. Online support can be valuable for its users by increasing the accessibility of professional support and creating opportunities for more self-direction in support.

BackgroundThe EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups.MethodsEarly in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care.ResultsThe EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region.ConclusionsBetter education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.

This paper investigates the functions, downsides, and limitations of empathy in chaplaincy care. Data were collected from 20humanist chaplains working in health care, prison, and military settings using semi-structured interviews. According to theparticipants, empathy is at the heart of their profession but has disadvantages as well. The analysis yields seven major functionsof empathy with corresponding downsides and limitations: (1) to connect, (2) to understand, (3) to guide, (4) to acknowledge,(5) to motivate, (6) to inspire, and (7) to humanize.We argue for a need to “talk about empathy” since despite its importanceand challenges, there is little professional and academic discussion about empathy in chaplaincy care.We hope that the findingsof this study can function as starting points for the discussion and thus contribute to the ongoing professionalization of chaplaincycare. To that end, we propose three topics for further reflection and conversation.

Background: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. Aim: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients’ care plans. Design: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). Setting/participants: Three palliative care teams including nurses ( N = 21), physicians ( N = 14) and spiritual caregivers ( N = 3). Results: The questionnaires showed an improvement on ‘Patient and family-centred communication’ of the End-of-life professional caregiver survey (+0.37, p Conclusions: Our training intervention resulted in increased palliative care professionals’ competence in identifying and exploring patients’ spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients’ spiritual concerns and adds value to their palliative care plans.

Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required.

Background An advanced cancer patient’s life is often disturbed by fear of cancer recurrence, cancer progress, approaching suffering, and fear of dying. Consequently, the role of the medical oncologist is not only to provide best quality anti-cancer treatment, but also to address the impact of disease and treatment on a patient’s life, the lived illness experience. We aimed to gain insights into whether and how medical oncologists working at an outpatient clinic identify and explore lived illness experiences raised by patients with advanced cancer, and how this influences patients’ responses. Methods Conversation Analysis was applied to analyse 16 verbatim transcribed audio-recorded consultations. Results We identified 37 fragments in which patients expressed a lived experience from 11 of the 16 consultations. We found differing responses from different oncologists. Patients continued talking about their lived experiences if the listener produced a continuer such as humming or tried to capture the experience in their own words. In contrast, a response with optimistic talking or the presentation of medical evidence prevented patients from further unfolding the experience. In consultations in which the lived illness experience was most extensively unfolded, medical oncologists and patients could constantly see each other’s facial expressions. Conclusions When a patient with advanced cancer spontaneously introduces a lived illness experience, it helps to identify and explore it when the medical oncologist produces a continuer or tries to capture this experience in their own words. Our findings can be implemented in training sessions, followed by frequent reinforcement in daily care.

This study aims at exploring the perspectives of patients with cardiovascular disease (CVD) on the existential meaning of lifestyle change as an evidence base for spiritual care by nurses and other health professionals. This study has been carried out within the paradigm of phenomenological caring sciences. The sample of 18 participants was purposively selected. Data consisted of in-depth interviews among adults with an episode of CVD. Data analysis of transcribed audio recordings was done using the method of Reflective Lifeworld Approach. For patients with CVD, changing one's lifestyle is an experience of transition in self-image. This transition has a twofold dynamic. On the one hand, it entails alternating phases in what is meaningful for the patient: letting go (loss of the normal, of health, of bodily functions) and holding on (desire to be healthy and to be normal). On the other hand, through the vulnerability and loneliness patients often experience, patients report a need to be encouraged by and connected to others/the Other. Making brave choices and connecting to the patients' spiritual resources of inner strength are crucial for successful lifestyle changes and meaningful transition to a new lifestyle. Lifestyle change is not only a physical and psychological process for the patient with CVD but also an existential transition that involves fundamental views and values of being human. It is an experience that is in part socially influenced, that is, by encouragement from meaningful others. For the health care worker, knowledge of this experience may help provide spiritual care after CVD.

Empathy is considered a key component of chaplaincy care, but little is known about the daily practice of empathy and the empathy barriers that chaplains encounter. This study investigates the factors that encourage or discourage empathy and provides insight into what chaplains actually do to achieve empathy and to overcome empathy challenges. Semistructured interviews were used to collect data from twenty humanist chaplains in the Netherlands. A grounded theory approach was applied to analyze the data. The core concept of empathic flow emerged from the analysis. This refers to the stream of empathic experiences that arises within the relational, dynamic exchange between chaplain and client. Based on the analysis, three types of empathic flow were distinguished: (1) uncomplicated empathy, which flows smoothly and easily; (2) challenged empathy, which fluctuates between flow and temporal stagnation or disruption; and (3) failed empathy, in which the flow of empathy is blocked. Professional empathy emerged as a second core category from the interview data. This refers to those chaplains’ activities that aim to establish or enhance empathic flow, particularly in the face of challenges. Professional empathy relies on several underlying key components: critical self-reflection, self-care, professional standards, and the chaplain’s humanistic worldview and values. The qualitative analysis yielded 10 themes of professional empathy. Our findings suggest that empathy is a rich and complex practice to which both chaplain and client contribute. As professional caregivers, chaplains consider themselves ultimately responsible for establishing empathy and overcoming challenges.

Most research on physician-assisted dying (PAD) in the Netherlands focuses on general practitioners (GPs). Less is known about the perspectives of other professionals. We performed narrative interviews with 10 professionals other than GPs to explore their perspectives on PAD in primary care. The results provide insight into PAD as an enacted practice involving many different actors, considerations, and expectations and into the intertwinement between PAD and palliative sedation. The study shows how a multidisciplinary perspective to PAD provides new avenues for practice, research, and ethics. It poses the question whether PAD can and should be considered merely a physicians' concern.

Some people request euthanasia or assisted suicide (EAS) even though they are not (severely) ill. In the Netherlands the presence of sufficient medical ground for the suffering is a strict prerequisite for EAS. The desirability of this 'medical ground'-boundary is currently questioned. Legislation has been proposed to facilitate EAS for older persons with "completed life" or "tiredness of life" in the absence of (severe) illness.To describe the characteristics and motivations of persons whose requests for EAS in the absence of (severe) illness did not result in EAS and the decision-making process of medical professionals in these types of requests.Analysis of 237 applicant records of the Dutch Euthanasia Expertise Center. We studied both the perspectives of applicants and medical professionals.The majority of the applicants were women (73%) aged 75 years and older (79%). Applicants most often indicated physical suffering as element of suffering and reason for the request. Medical professionals indicated in 40% of the cases no or insufficient medical ground for the suffering.Physical suffering plays an important role in requests for EAS even for persons who are not (severely) ill. From the presence of physical suffering it does not necessarily follow that for medical professionals there is sufficient medical ground to comply with the 'medical ground'-boundary.

The concept of “resilience” is considered helpful in understanding how people navigate adversities typical to later life. It is also a concept of growing interest internationally in research and in social policy and (social) practice. This article employs an integrative review methodology to explore current trends in theoretical and empirical research on resilience. A total of 25 quantitative and qualitative studies from 2011 to 2020 are included in this review. Findings indicate how the reviewed studies typically define resilience from three perspectives: resource-based, outcome-based, and process-based perspectives of resilience. In the results of the same studies, the resource-based and outcome-based perspectives are elaborated upon while detailed results from a process-based perspective are lacking. Additionally, even though adversity is recognized as a key element in conceptualizing resilience, it is scarcely defined if defined at all in the reviewed studies. Further research is recommended in this article to contribute to a realistic and encouraging narrative on growing older in social policy and (social) practice.