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The purpose of this article is to demonstrate how a particular narrative approach in nursing, namely the photo instrument can be connected with Ricoeur's hermeneutic philosophy. Ricoeur's concept of mimesis, when supplemented with the concept of performance, is shown relevant for understanding how patients construct and reformulate meaning in illness experiences. A single-case study is presented for a tentative exploration of how the key concepts of mimesis and performance can broaden our understanding of practice. More specifically it concerned the use of photographs in a group with psychiatric patients. [ABSTRACT FROM AUTHOR]

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker's expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. [ABSTRACT FROM AUTHOR]

BACKGROUND: Caregivers sometimes feel frustrated by present emphasis on self-determination in the care for individuals with an intellectual disability. They are confronted with situations in which there is a conflict between providing high quality care and respecting the client's autonomy. Such conflicts are prominent in the care for people with Prader-Willi syndrome (PWS). This condition is characterized by overeating behaviour which frequently leads to serious obesity. The central question in the present study is how persons involved, parents and professional caregivers, deal with the problems of the prevention of obesity in young individuals with PWS in everyday life. METHOD: In-depth qualitative interviews were conducted with 23 parents and 14 professional caregivers of 18 persons with PWS. The interview data were analysed using the constant comparative method as described in grounded theory. RESULTS: On the basis of analysis of the interviews four values emerge that parents and professional caregivers indicate as relevant and directive to their acting towards the child or the client: physical health, well-being, freedom and responsibility, and a liveable life. Furthermore, caregivers mentioned several enabling and limiting conditions that influence these values. And they named several interventions they used to realize the values. CONCLUSION: Of importance is the question how to create life in such a way that it is acceptable and meaningful for everybody involved. By building up a relationship to which acceptance and trust are central, a certain amount of independence and responsibility can be promoted. By creating trust it is possible to deal with rules in a less rigid way and to look where there is room for choices. [ABSTRACT FROM AUTHOR]

Responsive evaluation is an emerging vision and rationale for nursing evaluation. In this vision, evaluation is redefined as an engagement with all stakeholders about the value and meaning of their practice as a vehicle for learning, understanding, and improvement. In this article, the authors aim to illustrate the utility of a particular version of responsive evaluation, one that is connected with recent ideas about narrative and dialogue. They concentrate on methodological issues and use a case example to illustrate these issues. The case concerns a responsive evaluation of the quality of palliative care for cancer patients in a Dutch region. Methodological issues include the collection of stories through the use of conversational interviews. Stories can reveal the meaning and ambiguity of everyday situations. If evaluators listen to different stories and facilitate a dialogue about stories, this will enhance mutual understandings and promote respect, inclusiveness, and social equity. [ABSTRACT FROM AUTHOR]

Decision-making capacity for treatment and research raises complex conceptual issues. Given the fact that both considerations of respect for patient autonomy and beneficence/harm prevention have moral relevance in many cases, in the practice of health care the need exists to balance both in a moral responsible way. The moral concept of (mental) capacity or decisional capacity has a role to play in this balancing process. The current dominant approach towards the conceptualization and assessment of decision-making capacity, which focuses on cognition and rationality, has some serious shortcomings. In order to compensate for these shortcomings of the dominant approach, a number of alternative approaches may be promising. A first alternative focuses on issues of emotion and narrative; a second on identity and identification, and a third on dialogue and deliberation. By paying attention to the way in which people interprete their world (not only by cognition, but also by emotion), and how they shape their lives by processes of identification and communication, a broader perspective on capacity assessment in health care can be developed. Above that, these alternative approaches are less focused on the assessment of (in)capacity and more on enabling a person to become more competent through a process of empowerment, participation, and shared decision-making. [ABSTRACT FROM AUTHOR]

BACKGROUND: The policy concerning care for people with intellectual disability (ID) has developed from segregation via normalization towards integration and autonomy. Today, people with ID are seen as citizens who need to be supported to achieve a normal role in society. The aim of care is to optimize quality of life and promote self-determination. The promotion of autonomy for people with ID is not easy and gives rise to ethical dilemmas. Caregivers are regularly confronted with situations in which there is a conflict between providing good care and respecting the client's autonomy. This becomes evident in the case of prevention of obesity in people with Prader-Willi syndrome (PWS). METHOD: As part of a study about the ethical aspects of the prevention of obesity, in-depth qualitative interviews were conducted with the parents and professional caregivers of people with PWS. RESULTS: In analysing interviews with parents and formal caregivers, the present authors found that the dichotomy between respecting autonomy and securing freedom of choice on the one hand, and paternalism on the other, is too crude to do justice to the process of care. The stories indicated that caregivers see other options and act in other ways than to intervene without taking into account the wishes of the individual with PWS. The present authors elaborated these options, taking models of the physician-patient relationship as a heuristic starting point. They extended the logic of these models by focusing on the character of the process of interaction between caregiver and care receiver, and on the emotional aspects of the interactions. CONCLUSION: This approach results in more attention to processes of interpretation, deliberation and joint learning. [ABSTRACT FROM AUTHOR]

Aim. The aim of this study was to gain insight into compliance with the introduction of a new care model [emotion-orientated care (EOC)] as part of an intervention study (RCT) in psycho-geriatric care. The success of the implementation (compliance), as well as the expectations and experiences concerning the training were studied. Methods. Observations were conducted in four intervention homes and four control homes, and care-plans of residents were also analysed to see whether the implementation had succeeded. Semi-structured interviews were conducted with four persons in each of the four intervention sites (a total of 16 interviews) to study the experiences with the training and implementation. Findings. The observations showed no clear differences between intervention and control homes with regard to the interactions between residents and professional caregivers. Analysis of the reporting systems revealed differences within, as well as between, the intervention and control homes. The content of the reports showed no differences between the intervention and control homes. The interviewees had different expectations of the EOC training, depending on their disciplinary background. The caregivers regarded the training as a confirmation of their current practice. They experienced some changes at the individual level and some of them reported that the co-operation between units had become better. At the home-level no changes were reported. Every interviewee indicated that the implementation of EOC was difficult and laborious and that there were (mainly organizational) obstacles that could hinder the implementation of the EOC training. Conclusions. Observations and the analysis of the reporting systems indicated that there was no clear difference between intervention homes and control homes as to the actual implementation of the intervention, indicating that the compliance with the new care model was not optimal. The interviews gave some insight into factors that caused lack of compliance. [ABSTRACT FROM AUTHOR]

This article distinguishes two approaches within care theory, relating them to different views on the physician-patient relationship within philosophy of medicine. The first regards care as a skillful comportment by the care-giver, based upon intuitive insight into the needs of the care-receiver. The second regards care as a mutual endeavour, based upon openness and dialogue. The first approach resembles the interpretative model of the doctor-patient relationship; the second is parallel to the deliberative model. The two approaches within care theory and the two positions within philosophy of medicine are both expressions of a fundamental distinction between two different views of interpersonal understanding. This distinction is elaborated upon by discussing Gadamer's analysis of interpersonal understanding. [ABSTRACT FROM AUTHOR]

Background: Although compassion is a crucial element of physicians' professional performance and high-quality care, research shows it often remains an unmet need of patients. Understanding patients' and physicians' perspectives on compassionate care may provide insights that can be used to foster physicians' ability to respond to patients' compassion needs. Therefore, this study aims to understand how both patients and physicians experience the concept and practice of compassionate care., Methods: We conducted semi-structured interviews with eight patients and ten resident physicians at a University Medical Center in the Netherlands. Using thematic analysis, we separately coded patient and resident transcripts to identify themes capturing their experiences of compassionate care. This study was part of a larger project to develop an educational intervention to improve compassion in residents., Results: For both patients and residents, we identified four themes encompassing compassionate care: being there, empathizing, actions to relieve patients' suffering, and connection. For residents, a fifth theme was professional fulfillment (resulting from compassionate care). Although patients and residents both emphasized the importance of compassionate care, patients did not always perceive the physician-patient encounter as compassionate. According to residents, high workloads and time pressures hindered their ability to provide compassionate care., Discussion and Conclusion: Patients and residents have similar and varying understandings of compassionate care at the same time. Understanding these differences can aid compassion in medical practice. Based on the findings, three topics are suggested to improve compassion in residents: (1) train residents how to ask for patients' compassion needs, (2) address residents' limiting beliefs about the concept and practice of compassion, and (3) acknowledge the art and science of medicine cannot be separated., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Debets et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one's own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.

Background: Up to 65% of people with multiple sclerosis (PwMS) develop cognitive deficits, which hampers their ability to work, participating in day-to-day life and ultimately reducing quality of life (QoL). Early cognitive symptoms are often less tangible to PwMS and their direct environment and are noticed only when symptoms and work functioning problems become more advanced, i.e., when (brain) damage is already advanced. Treatment of symptoms at a late stage can lead to cognitive impairment and unemployment, highlighting the need for preventative interventions in PwMS., Aims: This study aims to evaluate the (cost-) effectiveness of two innovative preventative interventions, aimed at postponing cognitive decline and work functioning problems, compared to enhanced usual care in improving health-related QoL (HRQoL)., Methods: Randomised controlled trial including 270 PwMS with mild cognitive impairment, who have paid employment ≥ 12 h per week and are able to participate in physical exercise (Expanded Disability Status Scale < 6.0). Participants are randomised across three study arms: 1) 'strengthening the brain' - a lifestyle intervention combining personal fitness, mental coaching, dietary advice, and cognitive training; 2) 'strengthening the mind' - a work-focused intervention combining the capability approach and the participatory approach in one-on-one coaching by trained work coaches who have MS themselves; 3) Control group-receiving general information about cognitive impairment in MS and receiving care as usual. Intervention duration is four months, with short-term and long-term follow-up measurements at 10 and 16 months, respectively. The primary outcome measure of the Don't be late! intervention study will be HRQoL as measured with the 36-item Short Form. Secondary outcomes include cognition, work related outcomes, physical functioning, structural and functional brain changes, psychological functioning, and societal costs. Semi-structured interviews and focus groups with stakeholders will be organised to qualitatively reflect on the process and outcome of the interventions., Discussion: This study seeks to prevent (further) cognitive decline and job loss due to MS by introducing tailor-made interventions at an early stage of cognitive symptoms, thereby maintaining or improving HRQoL. Qualitative analyses will be performed to allow successful implementation into clinical practice., Trial Registration: Retrospectively registered at ClinicalTrials.gov with reference number NCT06068582 on 10 October 2023., (© 2024. The Author(s).)

Background: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener © , has recently been developed. The aim of the current study is to validate the Multiple Screener © in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation., Methods: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener © . Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener © is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires., Discussion: Validating the Multiple Screener © in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS., (© 2024. The Author(s).)