There is an increased focus on fostering integrity in research by through creating an open culture where research integrity dilemmas can be discussed. We describe a pilot intervention study that used Moral Case Deliberation (MCD), a method that originated in clinical ethics support, to discuss research integrity dilemmas with researchers. Our research question was: can moral case deliberation in research groups help to navigate research integrity dilemmas? We performed 10 MCDs with 19 researchers who worked in three different research groups (...) from three different disciplinary fields at a university in the Netherlands. We analyzed the dilemmas and values discussed, sent out a survey questionnaire to assess self-perceived moral competencies, and conducted in-depth interviews. We found research integrity dilemmas pertained to authorship disputes, supervision of junior co-workers, and questionable handling of data. Participants perceived the majority of moral competencies to a higher degree during the MCD when compared to perceiving them in daily practice afterward. Interviewees told us that they felt most comfortable discussing dilemmas among peers with whom they were not closely affiliated. We conclude that MCD sessions could be relevant in navigating research integrity dilemmas, but that revisions to ensure commitment and safety are required. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing (...) GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (shrink)

BackgroundClinical ethics support aims to support health care professionals in dealing with ethical issues in clinical practice. Although the prevalence of CES is increasing, it does meet challenges and pressing questions regarding implementation and organization. In this paper we present a specific way of organizing CES, which we have called integrative CES, and argue that this approach meets some of the challenges regarding implementation and organization.MethodsThis integrative approach was developed in an iterative process, combining actual experiences in a case study (...) in which we offered CES to a team that provides transgender health care and reflecting on the theoretical underpinnings of our work stemming from pragmatism, hermeneutics and organizational and educational sciences.ResultsIn this paper we describe five key characteristics of an integrative approach to CES; 1. Positioning CES more within care practices, 2. Involving new perspectives, 3. Creating co-ownership of CES, 4. Paying attention to follow up, and 5. Developing innovative CES activities through an emerging design.ConclusionsIn the discussion we compare this approach to the integrated approach to CES developed in the US and the hub and spokes strategy developed in Canada. Furthermore, we reflect on how an integrative approach to CES can help to handle some of the challenges of current CES. (shrink)

Background Decision-making competence is a complex concept in the care for transgender and gender diverse adolescents, since this type of care concerns one’s developing gender identity and involves treatment options that often lack international consensus. Even despite competence assessments, moral challenges arise in the decision-making process. Here, traditional forms of clinical ethics support such as moral case deliberation might not fit as these do not provide thematic guidance. This study therefore aimed to develop a practice-oriented ethics support tool to assist (...) care providers when dealing with moral challenges around decision-making competence in transgender adolescent care. Methods The study followed a participatory design to develop a tool in close collaboration with care providers; they had a say in all phases of development and dissemination. Firstly, nine care providers were interviewed about experienced moral challenges and needs for ethics support. Based on this, the structure and content of the tool was constructed and discussed in two focus group meetings, after which four care providers tested the tool and additional feedback was collected from the team and an advisory board. The final tool was presented to all Dutch care providers in transgender adolescent care. Results Care providers expressed a need for guidance in defining and assessing decision-making competence. Main moral challenges concerned discussing fertility options with young clients, dealing with co-occurring mental health difficulties and the decision-making role of parents. The final tool, named the Competence Consultant, is an interactive pdf containing four parts: (1) Clarify information; (2) Identify doubts and moral questions; (3) Guidance for conversations and (4) Overview and Conclusions. Discussion Developing an ethics support tool in a controversial care setting is highly relevant as it aims to help individual care providers in defining, discussing and dealing with their moral challenges in actual practice. The ‘Competence Consultant’ for transgender care providers contributes to their moral sensitivity and moral competence. It is an example of the development of innovative and integrative forms of thematic ethics support. (shrink)