Search

Background A coronary function test (CFT) is the recommended diagnostic test to identify coronary vasomotor dysfunction as a cause of symptoms in patients with angina and nonobstructive coronary arteries (ANOCA). Acetylcholine is the commonly used pharmacological agent for spasm provocation. We aimed to investigate an association between severity of symptoms and provocative acetylcholine dose. Methods and Results We included ANOCA patients undergoing clinically indicated CFT from the Netherlands Registry of Invasive Coronary Vasomotor Function Testing: NL‐CFT. Patients with epicardial spasm (n=251) were divided according to acetylcholine spasm triggering dose: low (2–20 mcg, EpiLOW), middle (100 mcg, EpiMIDDLE) or high (200 mcg, EpiHIGH). Patients with microvascular spasm (n=157) were analyzed irrespective of triggering dose. The patient groups were compared to each other and to a control group with negative CFT results (n=101). We assessed mean Seattle Angina Questionnaire angina frequency and summary scores at baseline and follow‐up and the proportion of patients improving or deteriorating. An inverse relationship between provocation dosage and angina frequency at baseline was found in epicardial spasm: the lower the triggering dose, the more frequently patients experienced angina (EpiLOW 48±20, EpiMIDDLE 53±21, EpiHIGH 57±19, microvascular spasm 61±21, controls 64±21, overall P=0.003). A trend was seen toward most patients improving in the high triggering dose group, and most patients deteriorating in the low triggering dose group. Conclusions A significant dose‐dependent relationship between spasm provocation and anginal complaints exists. Acetylcholine provocation dose could be incorporated as a risk stratification factor or surrogate outcome in future clinical trials. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT06083155.

Background: Within the field of cardiology, telehealth has been advocated by many as important benefits have been demonstrated regarding disease management and survival. Both patient- and physician-related barriers have hampered the uptake of telehealth in the clinical practice. The COVID-19 pandemic has pushed the upscaling of telehealth modalities. Objective: The current study will examine patients' preferences, needs, and recommendations regarding the use of telehealth at the cardiology outpatient clinic during the pandemic. Methods: Semi-structured focus groups were organized covering two themes: (1) patients' experiences with telehealth and (2) patients' needs and recommendations regarding the use of telehealth. Focus groups were held online using Microsoft Teams, and audio recordings were made. After transcribing the recordings, thematic analysis was applied to code the answers that were given. Results: A total of n = 19 patients were recruited; the mean age was 62.4 (7.7) and 10 (52.6%) were female. The majority of the patients (15/19) indicated to be positive regarding telehealth use mainly due to its time-saving character. Four patients were negative toward telehealth as they did not receive appropriate care in their perception due to telehealth use. Patients recommend using blended care where teleconsultation, and face-to-face appointments are provided in accordance with patients' preferences. Conclusions: This is the first study to examine, in-depth, cardiac patients' experiences, needs, and recommendations regarding telehealth use in the clinical practice. Learning from current experiences with the COVID-19 pandemic where upscaling of telehealth emerged will give us a foundation to further increase the uptake of telehealth in the clinical practice.

Background: In the Amsterdam Sexual Abuse Case (ASAC), infants and toddlers experienced childhood sexual abuse (CSA). The perpetrator was convicted, and psychosocial care was offered to children and families. A research project was established to investigate the impact of CSA at an early age, with this study specifically focusing on sexual education and development., Objective: To investigate parents' and children's experiences with sexual education and development following CSA., Participants and Setting: We conducted interviews with 18 parents of 20 children, and with 6 children themselves. On average, the children were 16 months old at the time of the CSA and 16 years old during the interviews., Methods: Qualitative open interviews using an interview guide, followed by thematic analysis., Results: In general, parents and children reported common experiences with sexual education and development. However, some distinctive concerns related to past CSA were mentioned by parents such as added weight to talking about sex, being more cautious, and additional conversations about boundaries and possible influence on sexual experiences. Also, both parents and children expressed uncertainty about the impact of the past sexual abuse on sexual development., Conclusions: Our findings generally align with existing literature on sexual education in a non-abused population. Impact on sexual development as perceived by parents and children was mostly absent, indicating resilience. Nonetheless, distinctive concerns and uncertainties about the impact of early CSA persist. Future research should delve deeper into the long-term consequences of early CSA and the factors contributing to resilience over time., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Research integrity (RI) is crucial for trustworthy research. Rules are important in setting RI standards and improving research practice, but they can lead to increased bureaucracy; without commensurate commitment amongst researchers toward RI, they are unlikely to improve research practices. In this paper, we explore how to combine rules and commitment in fostering RI. Research institutions can govern RI using markets (using incentives), bureaucracies (using rules), and network processes (through commitment and agreements). Based on Habermas' Theory of Communicative Action, we argue that network processes, as part of the lifeworld, can legitimize systems - that is, market or bureaucratic governance modes. This can regulate and support RI practices in an efficient way. Systems can also become dominant and repress consensus processes. Fostering RI requires a balance between network, market and bureaucratic governance modes. We analyze the institutional response to a serious RI case to illustrate how network processes can be combined with bureaucratic rules. Specifically, we analyze how the Science Committee established at Tilburg University in 2012 has navigated different governance modes, resulting in a normatively grounded and efficient approach to fostering RI. Based on this case, we formulate recommendations to research institutions on how to combine rules and commitment.

Purpose: In the BigMove intervention, people with physical and mental health conditions assess their functioning, set goals, and define action plans to achieve their goals recorded in an e-health application using all categories of the International Classification of Functioning, Disability, and Health (ICF). This study investigates whether data from this application can provide insight into participants' self-perceived functioning, goals and action plans and observe changes over time., Methods: Data from 446 participants were analysed with descriptive statistics to describe self-perceived functioning and the ICF categories related to the 15 most frequently chosen goals. Action plans were analysed using inductive analysis. Changes over time were investigated by comparing assessments before and after at least 4 months in the intervention., Results: The data provided insight into the self-perceived functioning, goals and action plans. Also, changes over time were observed. Self-perceived functioning changed from being mainly negative before, to mainly positive after the intervention. While goals were mostly related to the same ICF categories, the action plans changed from more specific short-term to more general long-term plans., Conclusions: Our study demonstrates that all categories of the ICF can be used to record self-perceived functioning, goals and action plans and monitor changes over time.

Background: The BigMove intervention aims to improve the functioning and quality of life of people with physical and mental health conditions via an integrated care approach. This pilot study evaluates the impact of the intervention on self-perceived health (SPH), quality of life (QoL), active coping behaviour, and mental and social functioning., Methods: Data were analysed from N = 457 participants who had been referred to the intervention by their general practitioner (mean age 48.98 years; 76% female). Three patient-reported and one clinician-rated measures were used: SPH, QoL (MANSA), active coping behaviour (UPCC-ACT), mental and social functioning (HoNOS). Pre- and post-intervention measurements (from 2011 to 2018) were compared using paired-samples t-tests. Due to missing data, analyses were conducted with 205-257 participants per completed outcome. Associations with age and sex were assessed using repeated-measures ANOVA. Clinically relevant change was evaluated with the Edwards-Nunnally index and standard error of measurement (SEM) scores., Results: Post-intervention, there were statistically significant improvements for all outcomes (p < 0.0001) with moderate to large effect sizes ( d = 0.41 to 1.02). The observed changes in outcomes can be considered as clinically relevant improvements., Conclusion: This pilot study provides preliminary evidence that the intervention has positive effects on SPH, QoL, active coping behaviour, and mental and social functioning., Competing Interests: The authors have no competing interests to declare., (Copyright: © 2024 The Author(s).)

Existing research integrity (RI) guideline development methods are limited in including various perspectives. While co-creation methods could help to address this, there is little information available to researchers and practitioners on how, why and when to use co-creation for developing RI guidelines, nor what the outcomes of co-creation methods are. In this paper, we aim to address this gap. First, we discuss how co-creation methods can be used for RI guideline development, based on our experience of developing RI guidelines. We elaborate on steps including preparation of the aims and design; participant sensitization; organizing and facilitating workshops; and analyzing data and translating them into guidelines. Secondly, we present the resulting RI guidelines, to show what the outcome of co-creation methods are. Thirdly, we reflect on why and when researchers might want to use co-creation methods for developing RI guidelines. We discuss that stakeholder engagement and inclusion of diverse perspectives are key strengths of co-creation methods. We also reflect that co-creation methods have the potential to make guidelines implementable if followed by additional steps such as revision working groups. We conclude that co-creation methods are a valuable approach to creating new RI guidelines when used together with additional methods.

The Active Recovery Triad (ART) model provides a framework for recovery-oriented care in long-term mental health settings. The aim of this study is to gain insight into the experiences and views of service users and their significant others regarding care and support they receive from teams working with the ART model. Semi-structured interviews were performed with nineteen service users and five significant others of teams operating in Dutch long-term mental health care. Data were analyzed using thematic analysis. The three core principles of the ART model formed the deductive basis of the analysis and for every principle themes were identified inductively. Under the principle 'Active', service users mentioned that they feel motivated, work actively on personal recovery goals and have dreams for the future. Service users valued the service as a safe environment, but several service users also preferred to live more independently. Under the principle 'Recovery', participants reported how the dimensions of recovery (health, personal identity, daily life and community functioning) were addressed in care and support. Also, specific conditions for recovery-oriented care were identified, for example regarding specific expertise of care providers. Under the principle 'Triad' the support from significant others, contact with care workers and with other service users were identified as important. The insights regarding what is important for service users and their significant others may contribute to the improvement of care and support in long-term mental health care. In addition, the findings of this study provide directions for the further development of the ART model., (© 2024. The Author(s).)

Background : The Active Recovery Triad (ART) model provides a framework for recovery-oriented care in the long-term mental health setting. The aim of this study is to gain insight into factors influencing the implementation process of the ART model. Methods : Focus groups were conducted with fourteen multidisciplinary teams that were in the process of implementing the ART model. Data were thematically analyzed. Results : Three phases of implementation were identified. In the first phase, getting started, support from both the top of the organization and the care workers, sufficient information to care workers, service users, and significant others, and creating momentum were considered crucial factors. In the second phase, during implementation, a stable team with a good team spirit, leadership and ambassadors, prioritizing goals, sufficient tools and training, and overcoming structural limitations in large organizations were seen as important factors. In the third phase, striving for sustainability, dealing with setbacks, maintaining attention to the ART model, and exchange with other teams and organizations were mentioned as core factors. Conclusions : The findings may support teams in making the shift from traditional care approaches towards recovery-oriented care in long-term mental health care.

Objective: The active recovery triad (ART) model provides guidelines for recovery-oriented care in long-term mental health care. The aim of this study is to evaluate whether compliance to the principles of the ART model is related to recovery-oriented care, service user recovery and satisfaction., Method: A prospective study was conducted including two measurements, in which we investigated compliance to the principles of the ART model (ART fidelity), recovery-oriented care as measured by the Recovery-Oriented Practices Index-Revised (ROPI-R) at team level (n = 18) and outcome measures on service user level (n = 101) related to personal recovery, social roles, level of functioning, clinical recovery, transition, and satisfaction. We used multilevel modeling to evaluate these relationships., Results: There was a significant association between active recovery triad (ART) fidelity and the ROPI-R. We did not find a significant association between overall ART fidelity and service user outcomes. Yet, we did find that higher ART fidelity in the domains "cooperation in the triad," "professionalization of staff," and "team structure" were related to improved clinical recovery, functioning, social roles, and performance of activities. However, higher ART fidelity in the domain "healing environment" was related to poorer functioning, and a higher score in the domain "safety and prevention of coercion" was related to poorer social roles and performance of activities., Conclusions and Implications for Practice: We can conclude that compliance to the principles of the ART model is related to recovery-oriented care, measured with the ROPI-R. In addition, the findings suggest that in particular elements in the ART model are related to meaningful recovery outcomes. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Background: Healthcare professionals in palliative care are found to be confronted with moral challenges on a frequent basis. CURA is a low-threshold instrument for dialogical ethical reflection that was developed to deal with these challenges. A previous study identified the need of healthcare professionals to be trained to introduce CURA in their organization, initiate and facilitate reflections with CURA, and contribute to the implementation of CURA. The aim of this study was to develop and evaluate a training for professionals to become 'CURA-ambassadors'., Methods: The training was developed in a participatory way in two cycles. We trained 72 healthcare professionals. The training was evaluated by means of a questionnaire and six semi-structured interviews., Results: The study resulted in a blended learning training combining training sessions with an e-module and with practicing with organizing and facilitating CURA in daily healthcare practice. The main objectives of the training are to enable CURA-ambassadors to introduce CURA within their organization, initiate and facilitate ethical reflections using CURA, and contribute to the implementation of CURA. Participants were generally positive about the training program and the trainers. Technical difficulties related to the e-module were mentioned as main point of improvement., Discussion: The training program can generate ownership, responsibility, and competency among CURA-ambassadors, which are essential foundations for implementing complex interventions in healthcare practice. The training program received positive evaluations shortly after completing the program. This study adds to our understanding of what is needed for healthcare professionals to use CURA, in order to support them in dealing with moral challenges and to foster their moral resilience. Further research is needed to assess whether participants experience the training as sufficient and effective when using and implementing CURA structurally in their organizations over a longer period of time., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: The ongoing quest to surgically create the (nearly) ideal neophallus in transgender men has led to the continuous development of transgender medicine and the proposed introduction of penis transplantation. However, both technical and ethical issues arise when developing this treatment., Aim: We sought to extract ethical considerations among different stakeholder groups regarding penile transplantation surgery in transgender men and to define preliminary clinical recommendations., Methods: Three semistructured focus groups, consisting of different stakeholders, were organized to participate in discussions of ethical considerations retrieved from the ethics literature of transplantation and transgender medicine. Analysis of the results was performed according to empirical ethics., Outcomes: Study outcomes were the identification of qualitative themes describing ethical considerations pertaining to penile transplantation in transgender men., Results: Nineteen people participated in this qualitative study. The main domains that emerged included arguments in favor of and arguments against penile transplantation. Although the participants expressed positive attitudes toward developing this care, with acknowledgement of the current limitations stakeholders of all groups were reluctant to endorse the introduction of penile transplantation for transgender men at this point., Clinical Implications: Under the present circumstances, all groups expressed both a wide variety of ethical considerations as well as a tendency to prefer developing alternative treatment options or improving the results of currently available treatments in relation to penile transplantation for transgender men., Strengths and Limitations: This study was the first (empirical) study to focus on this topic and included a diversity of stakeholder perspectives. Limitations included the hypothetical nature of the discussion as well as the clinical setting in which the topic has been studied., Conclusion: Introducing penile transplantation for transgender men, under the current circumstances, comes with a wide range of ethical considerations, which deal with personal identity, autonomy, medical risks, risk for transgender support and donor willingness, and issues regarding equality. Despite the present hesitancy to use penile transplantation, should the technical side of this treatment option develop, further research in the ethical field of penile transplantation for transgender men is recommended., Competing Interests: None declared., (© The Author(s) 2023. Published by Oxford University Press on behalf of The International Society of Sexual Medicine.)

To foster research integrity (RI), research institutions should develop a continuous RI education approach, addressing various target groups. To support institutions to achieve this, we developed RI education guidelines together with RI experts and research administrators, exploring similarities and differences in recommendations across target groups, as well as recommendations about RI education using approaches other than formal RI training. We used an iterative co-creative process. We conducted four half-day online co-creation workshops with 16 participants in total, which were informed by the RI education evidence-base. In the first two workshops, participants generated ideas for guidelines' content, focusing on different target groups and various approaches to RI education. Based on this content we developed first drafts of the guidelines. Participants in the third and fourth workshop refined those drafts. We next organized a working group which further prioritized, reorganized, and optimized the content of the guidelines. We developed four guidelines on RI education focusing on (a) bachelor, master and PhD students; (b) post-doctorate and senior researchers; (c) other RI stakeholders; as well as (d) continuous RI education. Across guidelines, we recommend mandatory RI training; follow-up refresher training; informal discussions about RI; appropriate rewards and incentives for active participation in RI education; and evaluation of RI educational events. Our work provides experience-based co-created guidance to research institutions on what to consider when developing a successful RI education strategy. Each guideline is offered as a distinct, publicly available tool in our toolbox ( www.sops4ri.eu/toolbox ) which institutions can access, adapt and implement to meet their institution-specific RI education needs.Trial registration https://osf.io/zej5b ., (© 2023. The Author(s).)

Background: The Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia., Objective: Gain insight in paediatric experts' views about which criteria are important to assess capacity, from what age minors can meet those criteria, what an assessment procedure should look like and what role parents should have., Methods: A Delphi study with 16 experts (paediatricians, paediatric nurses and paediatric psychologists) who work in Children Comfort Teams in Dutch academic hospitals. The questionnaire contained statements concerning criteria for capacity and procedural criteria. Consensus was defined as ≥80% agreement., Results: The experts agreed that five criteria for capacity, found in a previous literature study, are all important. They agreed that some children between ages 9 and 11 could meet all the criteria. Consensus was reached for the statements that the entire medical team should be involved in the decision making and that a second independent expert must assess the case. Experts agreed that the parents' opinion is relevant and should always be taken into account, but it need not be decisive., Conclusion: This study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To identify moral challenges experienced by nurses and volunteers in palliative care. Methods: A qualitative hermeneutic research design was used. Interviews with nurses ( N  = 10) and volunteers ( N  = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. Results: Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. Conclusion: Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into 'real-world ethical challenges' of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.

Purpose: Over the past two decades, healthcare systems have shifted to adopt a more holistic, patient-centered care system. However, operationalization in practice remains challenging. Two frameworks have contributed substantially to the transformation toward more holistic and patient-centered care: the International Classification of Functioning, Disability and Health (ICF) and the capability approach (CA). Using these frameworks jointly can contribute to improved patient-centered care in clinical practice., Methods: This article explores the strengths and weaknesses of the use of the two frameworks in care and investigates whether using them jointly might contribute to more appropriate and patient-centered care. We will present a practical example of this integration in the form of a novel e-health application., Results: The exploration indicated that if the frameworks are used jointly, the individual weaknesses can be overcome. The application, used to exemplify the joint use of the frameworks, contains all categories of the ICF. It offers a unique tool that allows a person to self-assess, record, and evaluate their functioning and capabilities and formulate related goals., Conclusions: Using the ICF jointly with the CA can foster holistic, patient-centered care. The e-health application provides a concrete example of how the frameworks can be used jointly. Implications for rehabilitationUsing the International Classification of Functioning, Disability and Health jointly with the capability approach can foster holistic, patient-centered care.The joint use of the frameworks is demonstrated by an e-health application which enables users to evaluate their functioning in relation to their own goals, provides them with the opportunity to increase control over their health and have a more active role in their care.Tools to record both functioning and goals from a patient's perspective can support professionals in offering patient-centered care in daily practice.Individual recording, monitoring and evaluation of functioning, capabilities and goals regarding functioning can provide a basis for research and quality improvement.

Background: Self-binding directives (SBDs) are psychiatric advance directives that include a clause in which mental health service users consent in advance to involuntary hospital admission and treatment under specified conditions. Medical ethicists and legal scholars identified various potential benefits of SBDs but have also raised ethical concerns. Until recently, little was known about the views of stakeholders on the opportunities and challenges of SBDs., Aims: This article aims to foster an international exchange on SBDs by comparing recent empirical findings on stakeholders' views on the opportunities and challenges of SBDs from Germany, the Netherlands, and the United Kingdom., Method: Comparisons between the empirical findings were drawn using a structured expert consensus process., Results: Findings converged on many points. Perceived opportunities of SBDs include promotion of autonomy, avoidance of personally defined harms, early intervention, reduction of admission duration, improvement of the therapeutic relationship, involvement of persons of trust, avoidance of involuntary hospital admission, addressing trauma, destigmatization of involuntary treatment, increase of professionals' confidence, and relief for proxy decision-makers. Perceived challenges include lack of awareness and knowledge, lack of support, undue influence, inaccessibility during crisis, lack of cross-agency coordination, problems of interpretation, difficulties in capacity assessment, restricted therapeutic flexibility, scarce resources, disappointment due to noncompliance, and outdated content. Stakeholders tended to focus on practical challenges and did not often raise fundamental ethical concerns., Conclusions: Stakeholders tend to see the implementation of SBDs as ethically desirable, provided that the associated challenges are addressed.

Background: Self-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available., Aims: The aim of the study was to identify opportunities and challenges of SBDs perceived by stakeholders who have personal or professional experience with legally enforceable SBDs., Methods: Data collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically., Results: Perceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation., Conclusions: Stakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards., (© 2023. The Author(s).)

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point Likert scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78-87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience., (© 2021. The Author(s).)

Teaching responsible conduct of research (RCR) to PhD students is crucial for fostering responsible research practice. In this paper, we show how the use of Moral Case Deliberation-a case reflection method used in the Amsterdam UMC RCR PhD course-is particularity valuable to address three goals of RCR education: (1) making students aware of, and internalize, RCR principles and values, (2) supporting reflection on good conduct in personal daily practice, and (3) developing students' dialogical attitude and skills so that they can deliberate on RCR issues when they arise. What makes this method relevant for RCR education is the focus on values and personal motivations, the structured reflection on real experiences and dilemmas and the cultivation of participants' dialogical skills. During these structured conversations, students reflect on the personal motives that drive them to adhere to the principles of good science, thereby building connections between those principles and their personal values and motives. Moreover, by exploring personal questions and dilemmas related to RCR, they learn how to address these with colleagues and supervisors. The reflection on personal experiences with RCR issues and questions combined with the study of relevant normative frameworks, support students to act responsibly and to pursue RCR in their day-to-day research practice in spite of difficulties and external constraints., (© 2023. The Author(s).)

Objectives: A previously developed decision model to prioritize surgical procedures in times of scarce surgical capacity used quality of life (QoL) primarily derived from experts in one center. These estimates are key input of the model, and might be more context-dependent than the other input parameters (age, survival). The aim of this study was to validate our model by replicating these QoL estimates., Methods: The original study estimated QoL of patients in need of commonly performed procedures in live expert-panel meetings. This study replicated this procedure using a web-based Delphi approach in a different hospital. The new QoL scores were compared with the original scores using mixed effects linear regression. The ranking of surgical procedures based on combined QoL values from the validation and original study was compared to the ranking based solely on the original QoL values., Results: The overall mean difference in QoL estimates between the validation study and the original study was - 0.11 (95% CI:  -0.12 - -0.10). The model output (DALY/month delay) based on QoL data from both studies was similar to the model output based on the original data only: The Spearman's correlation coefficient between the ranking of all procedures before and after including the new QoL estimates was 0.988., Discussion: Even though the new QoL estimates were systematically lower than the values from the original study, the ranking for urgency based on health loss per unit of time delay of procedures was consistent. This underscores the robustness and generalizability of the decision model for prioritization of surgical procedures., (© 2023. The Author(s).)

The Embassy of Good Science ( https://www.embassy.science) aims to improve research integrity and research ethics by offering an online, open, 'go-to' platform, which brings together information on research integrity and research ethics and makes that information accessible, understandable, and appealing. It effectively organizes and describes research integrity and research ethics guidelines, educational materials, cases, and scenarios. The Embassy is wiki-based, allowing users to add -- when logged in with their ORCID researcher id -- new information, and update and refine existing information. The platform also makes the research integrity and research ethics community visible and more accessible in pages dedicated to relevant initiatives, news and events. Therefore, the Embassy enables researchers to find useful guidance, rules and tools to conduct research responsibly. The platform empowers researchers through increased knowledge and awareness, and through the support of the research integrity and research ethics community. In this article we will discuss the background of this new platform, the way in which it is organized, and how users can contribute., Competing Interests: No competing interests were disclosed., (Copyright: © 2023 van Hoof M et al.)

This article presents an ethics support instrument for healthcare professionals called CURA. It is designed with a focus on and together with nurses and nurse assistants in palliative care. First, we shortly go into the background and the development study of the instrument. Next, we describe the four steps CURA prescribes for ethical reflection: (1) Concentrate, (2) Unrush, (3) Reflect, and (4) Act. In order to demonstrate how CURA can structure a moral reflection among caregivers, we discuss how a case was discussed with CURA at a psychogeriatric ward of an elderly care home. Furthermore, we go into some considerations regarding the use of the instrument in clinical practice. Finally, we focus on the need for further research on the effectiveness and implementation of CURA.

Background: In the Netherlands, patients have the legal right to make a request for euthanasia to their physician. However, it is not clear what it means in a moral sense for a physician to receive a request for euthanasia. The aim of this study is to explore the moral values of physicians regarding requests for euthanasia., Methods: Semi-structured interviews were conducted with nine primary healthcare physicians involved in decision-making about euthanasia. The data were inductively analyzed which lead to the emergence of themes, one of which was about values regarding end-of-life decisions., Results: Four clusters of values related to euthanasia requests are described: values related to 1) the patient; 2) the family; 3) the physician; and 4) life and death. The data show that the participants value patient autonomy as a necessary but not sufficient condition for meeting a euthanasia request. A good relationship with the patient and the family are important. For the physician, the values physician autonomy, responsibility, understanding the patient and relief of suffering play a role. Life as an intrinsic good and a peaceful death are also important values., Conclusion: This study shows that next to patient autonomy and the relationship with the patient and the family, it is important for the participants to act in accordance with their professional values and to do justice to values related to life and death. The awareness of going against the intrinsic value of life is crucial, even if performing euthanasia may result in a feeling of relief or gratitude afterwards., (© 2022. The Author(s).)

Fostering research integrity (RI) increasingly focuses on normative guidance and supportive measures within institutions. To be successful, the implementation of support should be informed by stakeholders' experiences of RI support. This study aims to explore experiences of RI support in Dutch, Spanish and Croatian universities. In total, 59 stakeholders (Netherlands n = 25, Spain n = 17, Croatia n = 17) participated in 16 focus groups in three European countries. Global themes on RI support experiences were identified by thematic analysis. Themes identified were: 'RI governance and institutional implementation', 'RI roles and structures', 'RI education and supervision', and 'Infrastructure, technology and tools supporting daily practice'. Experiences of support differed between countries in relation to: the efforts to translate norms into practice; the extent to which RI oversight was a responsibility of RE structures, or separate RI structures; and the availability of support close to research practice, such as training, responsible supervision, and adequate tools and infrastructure. The study reinforces the importance of a whole institutional approach to RI, embedded within local jurisdictions, rules, and practices. A whole institutional approach puts the emphasis of responsibility on institutions rather than individual researchers. When such an approach is lacking, some stakeholders look for intervention by authorities, such as funders, outside of the university., (© 2022. The Author(s).)

Background: A just culture is regarded as vital for learning from errors and fostering patient safety. Key to a just culture after incidents is a focus on learning rather than blaming. Existing research on just culture is mostly theoretical in nature., Aim: This study aims to explore requirements and challenges for fostering a just culture within healthcare organizations., Methods: We examined initiatives to foster the development of a just culture in five healthcare organizations in the Netherlands. Data were collected through interviews with stakeholders and observations of project group meetings in the organizations., Results: According to healthcare professionals, open communication is particularly important, paying attention to different perspectives on an incident. A challenge related to open communication is how to address individual responsibility and accountability. Next, room for emotions is regarded as crucial. Emotions are related to the direct consequences of incidents, but also to the response of the outside world, including the media and the health inspectorate., Conclusions: A challenge in relation to emotions is how to combine attention for emotions with focusing on facts, both within and outside the organization. Finally, healthcare professionals attach importance to commitment and exemplary behavior of management. A challenge as a manager here is how to keep distance while also showing commitment. Another challenge is how to combine openness with privacy of the parties involved, and how to deal with less nuanced views in other layers of the organization and in the outside world. Organizing reflection on the experienced tensions may help to find the right balance., (© 2022. The Author(s).)

Objectives: A just culture is considered a promising way to improve patient safety and working conditions in the healthcare sector, and as such is also of relevance to healthcare regulators who are tasked with monitoring and overseeing quality and safety of care. The objective of the current study is to explore the experiences in healthcare organisations regarding the role of the healthcare inspectorate in enabling a just culture., Design: Qualitative study using interviews and focus groups that were transcribed verbatim, and observations of which written reports were made. Transcripts and observation reports were thematically analysed., Setting: Three mental healthcare providers, two hospitals and the healthcare inspectorate in the Netherlands., Participants: We conducted 61 interviews and 7 focus groups with healthcare professionals, managers and other staff in healthcare organisations and with inspectors. Additionally, 27 observations were conducted in healthcare organisations., Results: We identified three themes in our data. First, professionals and managers in healthcare organisations perceive the inspectorate as a potential catalyst for learning processes, for example, as an instigator of investigating incidents thoroughly, yet also as a potential barrier as its presence and procedures limit how open employees feel they can be. Second, a just culture is considered relational and layered, meaning that relationships between different layers within or outside the organisation might hinder or promote a just culture. Finally, for inspectors to enable a just culture requires finding a balance between allowing organisations the time to take responsibility for quality and safety issues, and timely regulatory intervention when healthcare providers are unwilling or unable to act., Conclusions: If regulators intend to enable the development of a just culture within healthcare organisations, they must adopt regulatory procedures that support reflection and learning within the organisations they regulate and consider mutual trust as a vital regulatory tool., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

Physician assisted death (PAD) for patients with a psychiatric disorder is a controversial topic of increasing relevance, since a growing number of countries are allowing it. General requirements for PAD include that patients possess decision-making capacity to decide on PAD and that their suffering is unbearable and irremediable. In the Netherlands PAD has been eligible for patients with psychiatric disorders since the 1990s, making it one of the few countries that can offer insights on the practice from real life experience. Much of the literature describing these experiences is only available in Dutch. This article aims to make this knowledge more widely available and provide a comprehensive overview of the experience with PAD for psychiatric suffering in the Netherlands. First, the history of PAD for patients suffering from a psychiatric disorder is described. Second, an overview of relevant rules and regulations governing the practice is given. Third, an overview is provided of the scarce epidemiological data. Finally, we will discuss two major clinical challenges; establishing irremediability and decision-making capacity., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 van Veen, Widdershoven, Beekman and Evans.)

The prevalence of Clinical ethics support (CES) services is increasing. Yet, questions about what quality of CES entails and how to foster the quality of CES remain. This paper describes the development of a national network (NEON), which aimed to conceptualize and foster the quality of CES in the Netherlands simultaneously. Our methodology was inspired by a responsive evaluation approach which shares some of our key theoretical presuppositions of CES. A responsive evaluation methodology engages stakeholders in developing quality standards of a certain practice, instead of evaluating a practice by predefined standards. In this paper, we describe the relationship between our theoretical viewpoint on CES and a responsive evaluation methodology. Then we describe the development of the network (NEON) and focus on three activities that exemplify our approach. In the discussion, we reflect on the similarities and differences between our approach and other international initiatives focusing on the quality of CES., (© 2021. The Author(s).)

Background: Sexual boundary violations (SBV) in healthcare are harmful and exploitative sexual transgressions in the professional-client relationship. Persons with mental health issues or intellectual disabilities, especially those living in residential settings, are especially vulnerable to SBV because they often receive long-term intimate care. Promoting good sexual health and preventing SBV in these care contexts is a moral and practical challenge for healthcare organizations., Methods: We carried out a qualitative interview study with 16 Dutch policy advisors, regulators, healthcare professionals and other relevant experts to explore their perspectives on preventing SBV in mental health and disability care organizations. We used inductive thematic analysis to interpret our data., Results: We found three main themes on how healthcare organizations can prevent SBV in mental health and disability care: (1) setting rules and regulations, (2) engaging in dialogue about sexuality, and (3) addressing systemic and organizational dimensions., Conclusion: Our findings suggest that preventing SBV in mental health and disability care organizations necessitates setting suitable rules and regulations and facilitating dialogue about positive aspects of sexuality and intimacy, as well as about boundaries, and inappropriate behaviors or feelings. Combining both further requires organizational policies and practices that promote transparency and reflection, and focus on creating a safe environment. Our findings will help prevent SBV and promote sexual health in mental health and disability care organizations., (© 2022. The Author(s).)

Background: Existing clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care., Method: We used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA., Results: We distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection., Conclusions: Participatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments., (© 2022. The Author(s).)