The quality of caring relationships

In health care, relationships between patients or disabled persons and professionals are at least co-constitutive for the quality of care. Many patients complain about the contacts and communication with caregivers and other professionals. From a care-ethical perspective a good patient-professional relationship requires a process of negotiation and shared understanding about mutual normative expectations. Mismatches between these expectations will lead to misunderstandings or conflicts. If caregivers listen to the narratives of identity of patients, and engage in a deliberative dialogue, they will better be able to attune their care to the needs of patients. We will illustrate this with the stories of three women with multiple sclerosis. Their narratives of identity differ from the narratives that caregivers and others use to understand and identify them. Since identities give rise to normative expectations in all three cases there is a conflict between what the women expect of their caregivers and vice-versa. These stories show that the quality of care, defined as doing the right thing, at the right time, in the right way, for the right person, is dependent on the quality of caring relationships

Combining rules and dialogue:exploring stakeholder perspectives on preventing sexual boundary violations in mental health and disability care organizations

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

How to combine rules and commitment in fostering research integrity?

Research integrity (RI) is crucial for producing research that is trustworthy and of high quality. Rules are important in setting RI standards, improving research practice and fostering responsible research practices. At the same time, rules can lead to increased bureaucracy, which without commensurate increased commitment amongst researchers towards RI is unlikely to lead to more responsible research behavior. In this paper, we explore the question: How can rules and commitment be combined to foster RI? There are three ways that research institutions can govern RI: markets (governing through incentives), hierarchies or bureaucracies (governing through rules), and network processes (governing through commitment and agreement at group level). Based on Habermas’ Theory of Communicative Action, we argue that network processes focusing on consensus, as part of the lifeworld, are necessary to legitimize and support systems, i.e. market and bureaucratic modes of governance. We analyze the institutional response to a serious RI case to illustrate how network processes can create a context in which rules can foster RI. Specifically, we analyze how the Science Committee established at Tilburg University in 2012 has navigated and combined different modes of governance to foster RI. Based on this case analysis, we formulate recommendations to research institutions on how to combine rules and commitment

The age limit for euthanasia requests in the Netherlands:a Delphi study among paediatric experts

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.</p

Motivations, aims and communication around advance directives A mixed-methods study into the perspective of their owners and the influence of a current illness

AbstractObjectiveWhat are motivations of owners of an advance directive (AD) to draft an AD, what do they aim for with their AD and do they communicate about their AD?MethodsWritten questionnaires were sent to a cohort of people owning different types of ADs (n=5768). A purposive sample of people suffering from an illness was selected from the cohort for an in-depth interview (n=29).ResultsAbout half of our population had no direct motivation to draft their AD. Most mentioned motivation for the other half was an illness of a family member or friend. Many different and specific aims for drafting an AD were mentioned. An often mentioned more general aim in people with different ADs was to prevent unnecessary lengthening of life or treatment (14–16%). Most respondents communicated about having an AD with close-ones (63–88%) and with their GP (65–79%). In the interviews people gave vivid examples of experiences of what they hoped to prevent at the end of life. Some mentioned difficulties foreseeing the future and gave examples of response shift.ConclusionADs can give directions to caregivers about what people want at the end of life.Practice implicationsADs have to be discussed in detail by their owners and caregivers, since owners often have specific aims with their AD

Conceptualizing autonomy in the context of chronic physical illness: relating philosophical theories to social scientific perspectives

The aim of this article is to conceptualize autonomy in the context of chronic physical illness. To this end, we compare and contrast a selection of contemporary philosophical theories of autonomy with social scientific perspectives on chronic illness, particularly models of disability and symbolic interactionism. The philosophical theories mainly depart from a positive conceptualization of autonomy, which involves actively shaping one's life and identifying with fundamental values. This conceptualization is preferred over a negative conceptualization, which defines autonomy as non-interference, for its compatibility with social models of disability and with the assumption that people are interdependent. Interference may disable, but also enable people with a chronic illness to shape their lives. What matters is that people can realize what they want to realize. We suggest that, in the context of chronic physical illness, autonomy might be conceptualized as correspondence between what people want their lives to be like and what their lives are actually like. Disturbed autonomy might be restored either by expanding opportunities to arrange life or by adjusting how one wants life to be arranged. The grounds for the latter approach might be questioned, first, if people have not adjusted what they want carefully, and second, if reorganization of the material and social environment would have made it unnecessary to adjust one's arrangement of life

Important Topics for Fostering Research Integrity by Research Performing and Research Funding Organizations:A Delphi Consensus Study

To foster research integrity (RI), it is necessary to address the institutional and system-of-science factors that influence researchers’ behavior. Consequently, research performing and research funding organizations (RPOs and RFOs) could develop comprehensive RI policies outlining the concrete steps they will take to foster RI. So far, there is no consensus on which topics are important to address in RI policies. Therefore, we conducted a three round Delphi survey study to explore which RI topics to address in institutional RI policies by seeking consensus from research policy experts and institutional leaders. A total of 68 RPO and 52 RFO experts, representing different disciplines, countries and genders, completed one, two or all rounds of the study. There was consensus among the experts on the importance of 12 RI topics for RPOs and 11 for RFOs. The topics that ranked highest for RPOs concerned education and training, supervision and mentoring, dealing with RI breaches, and supporting a responsible research process (e.g. through quality assurance). The highest ranked RFO topics concerned dealing with breaches of RI, conflicts of interest, and setting expectations on RPOs (e.g. about educating researchers about RI). Together with the research policy experts and institutional leaders, we developed a comprehensive overview of topics important for inclusion in the RI policies of RPOs and RFOs. The topics reflect preference for a preventative approach to RI, coupled with procedures for dealing with RI breaches. RPOs and RFOs should address each of these topics in order to support researchers in conducting responsible research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11948-021-00322-9