Initial symptoms and late complication in Lyme neuroborreliosis from the perspective of patients and relatives: a qualitative study.

BACKGROUND: Lyme borreliosis is by far the most common vector-borne infection in Western Europe. The most severe manifestation of Lyme borreliosis is Lyme neuroborreliosis (LNB). In LNB symptoms vary from mild to severe and may include late complications that involve both physical and/or neurocognitive constraints. An estimated 25-28% of the LNB population suffers from late complications. This study investigates patient and relative perspectives on everyday life with LNB symptoms, diagnosis, and treatment to identify areas for improvement of healthcare. METHODS: A focus group was conducted at Odense University Hospital, Denmark. The focus group comprised 16 participants, nine patients diagnosed with LNB who had been treated at the Clinical Center for Emerging and Vector-borne Infections, and seven relatives of the patients' choice. The focus group lasted 2 ½ hours and was audio recorded as well as documented in field notes. RESULTS: Data analysis was grounded in the conceptual framework of critical psychology and resulted in three main themes: (1) Burden of LNB symptoms in everyday life, (2) A break in the conduct of everyday life caused by LNB and (3) Need for transparent pathways to specialist knowledge. CONCLUSIONS: Before diagnosis and treatment, each patient reported varying degrees of non-treatable pain, and cognitive and/or musculoskeletal symptoms. Visible physical symptoms were rare. All patients had experienced that their bodily symptoms remained unaddressed throughout numerous encounters with the healthcare system. The course of LNB comes with a break in patients' everyday lives and self-understandings affecting their ability to work and manage everyday activities. Patients and relatives strongly recommend a specialised LNB clinic.

Exploring young adults' experiences with food allergy during their teenage years: A practice research study.

INTRODUCTION: Symptoms of anxiety, eating disorders and social isolation are prevalent among teenagers with food allergy compared to peers without. Treatment of teenagers with food allergy focus on preventing anaphylactic reactions, with little attention to promoting social and emotional well-being. The aim of the study was to explore young adults' perspectives on everyday life with food allergy during their teenage years to improve future clinical practice. METHODS: Critical psychological practice research. During a 2-day camp the perspectives of 10 young adults (18-23 years) were explored through participant observation and informal interviews. Three follow up interviews were conducted. A co-researcher group discussed preliminary results, clinical challenges and ways forward. RESULTS: Being together with peers with food allergy was crucial, fostering belonging and normalisation. The shift in responsibility of managing the risk feels overwhelming and stressful during teen age. Self-understanding was influenced when managing food allergy in social contexts, inducing feelings of burden and isolation. Acceptance and understanding from social relations became important for all participants, and they all underlined desire for being viewed as individuals rather than being defined by their allergy. CONCLUSION: Support from other peers with food allergy is crucial for the participants. Transition to independently managing risks introduces uncertainty and social constraints, affecting self-understanding and interactions. Clinicians should prioritise peer support and empower teenagers in managing the risk and psychosocial challenges.

How prehospital emergency personnel manage ethical challenges: the importance of confidence, trust, and safety.

BACKGROUND: Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine. METHODS: We explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach. RESULTS: We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope. CONCLUSION: Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout.

Ethical challenges experienced by prehospital emergency personnel: a practice-based model of analysis.

BACKGROUND: Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. In prehospital emergency medicine, decision-making commonly takes place in everyday life, under time pressure, with limited information about a patient and with few possibilities of consultation with colleagues. This paper explores the ethical challenges experienced by prehospital emergency personnel. METHODS: The study was grounded in the tradition of action research related to interventions in health care. Ethical challenges were explored in three focus groups, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. The participants, 15 in total, were recruited through an internal information network of the emergency services. Focus groups were audio-recorded and transcribed verbatim. RESULTS: The participants described ethical challenges arising when clinical guidelines, legal requirements, and clinicians' professional and personal value systems conflicted and complicated decision-making processes. The challenges centred around treatment at the end of life, intoxicated and non-compliant patients, children as patients-and their guardians, and the collaboration with relatives in various capacities. Other challenges concerned guarding the safety of oneself, colleagues and bystanders, prioritising scarce resources, and staying loyal to colleagues with different value systems. Finally, challenges arose when summoned to situations where other professionals had failed to make a decision or take action when attending to patients whose legitimate needs were not met by the appropriate medical or social services, and when working alongside representatives of authorities with different roles, responsibilities and tasks. CONCLUSION: From the perspective of the prehospital emergency personnel, ethical challenges arise in three interrelated contexts: when caring for patients, in the prehospital emergency unit, and during external collaboration. Value conflicts may be identified within these contexts as well as across them. A proposed model of analysis integrating the above contexts can assist in shedding light on ethical challenges and value conflicts in other health care settings. The model emphasises that ethical challenges are experienced from a particular professional perspective, in the context of the task at hand, and in a particular, the organisational setting that includes work schedules, medical guidelines, legal requirements, as well as professional and personal value systems.

Transformations of practice in online exercise training for patients with COPD led by physiotherapists - a qualitative study.

PURPOSE: The aim of this study was to characterize the practice of telemediated training for patients with very severe Chronic Obstructive Pulmonary Disease (COPD) and to inform the development of clinical/professional practice. METHODS: Inspired by ethnographic methodology, participating observation, informal and formal interviews were conducted with patients (11), their partners (4), and physiotherapists (6) at sites where the telemediated training was practiced. Postphenomenology was used as theoretical and analytical framework. RESULTS: Telemediated training in the homes of the patients takes place where most daily activities happen, and together with activities in the rehabilitation units they are included in the training in a reduced or amplified version that may compromise the privacy of the patients. The mediated image and sound challenge the training and communication activities and the possibility for the physiotherapists to estimate the condition of the patients. Consequently, the physiotherapists lower how much they push the patients in the exercises. CONCLUSIONS: Making training accessible to very severely ill patients with COPD through homebased telemediation comes with several trade-offs. This study can be used to educate clinical practice before and during the practicing of telemediated services, which need to be organized in a way that allows continuous adjustment.IMPLICATIONS FOR PRACTICEThe technology itself is not a neutral device in online health care provision. Health professionals should therefore:Play an active role in structuring the content, communication, and inclusion of the patients' context during online health care provision.Receive training in how to spot ways in which online health care provision transforms traditional practice and to how to work around its limitations.Organize online health care practices in ways that allow for continuous adjustment (for which they need back up from management).

Telemediated Training in the Home as a Part of the Everyday Life and Practice With Very Severe Chronic Obstructive Pulmonary Disease.

Patients with very severe chronic obstructive pulmonary disease (COPD) conduct their everyday lives under shortness of breath. The aim of this study was to explore telemediated exercise training to patients at home, with the conduct of everyday life as a theoretical framework. Based on ethnographic fieldwork involving a hospital, two municipalities, and homes of 11 patients from 2013 to 2017, this article shows how telemediated training became part of patients' and partners' everyday lives and the prioritization of time and resources for basic activities. Most of the patients found telemediated training meaningful, that it can work as an agent of hope in holding on to essential everyday life activities, but also that it may be experienced as burdensome and disciplining. The physiotherapists' understanding of the patients' circumstances and needs for rehabilitation changed. The article argues that telemediated training should be offered as part of a palliative approach for those severely affected by COPD.

Patient perspectives and experience on the diagnostic pathway of lung cancer: A qualitative study.

OBJECTIVES: Lung cancer is one of the most common types of cancer, with high mortality rate and a significant burden of symptoms. It is therefore important to assess patients' perceived quality of life during the diagnostic process and treatment. Knowledge of and attention to patients' perspectives, experiences, and expectations in relation to lung cancer diagnostic pathways is limited. The aim of the study is to contribute with patients' and relatives' experiences with and their assessment of the quality of a hospital-based lung cancer diagnostic pathway. METHODS: A qualitative study was conducted, comprising participant observation with 20 patients and semi-structured interviews with further 19 patients referred to the Lung Cancer Package, which initiates a fast track diagnostic pathway in a hospital setting. Data were obtained over a period of 9 months and analysed in collaboration with an interdisciplinary team of health professionals. The purpose was to further develop existing management strategies of the fast track diagnostic pathway based on patient's perspectives. RESULTS: Patients associated the fast track diagnostic pathway with high levels of anxiety due to the immediate risk of a lung cancer diagnosis. Although patients experienced the fast track programme as very challenging, they still wanted to move through the diagnostic pathway as quickly as possible. The patients expressed a need for support from relatives and repeatedly required information in multiple formats from health professionals throughout the diagnostic pathway. CONCLUSIONS: The study provided insight into the need for developing the fast track diagnostic pathway with a focus on patient anxiety, network involvement, and information strategies. The results qualified clinical practice with an increased focus on managing patients' anxiety, raised awareness to involve relatives in the diagnostic process, and relaying information in dialogue with patients and their relatives, including management strategies to support patients through diagnostic investigations in the fast track programme.

Implementing ethics reflection groups in hospitals: an action research study evaluating barriers and promotors.

BACKGROUND: An ethics reflection group (ERG) is one of a range of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the implementation process of interdisciplinary ERGs in psychiatric and general hospital departments in Denmark. To our knowledge, this is the first study of ERG implementation to include both psychiatric and general hospital departments. METHODS: The implementation and evaluation strategies are inspired by action research, using a qualitative approach and systematic text condensation of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. RESULTS: The implementation process was influenced by both structural factors and factors related to clinicians having different values, interests and experiences. Structural barriers and promotors in the process to implement ERG included the following sub-categories: Organizational factors, recruitment and training of ethics facilitators, the deliberation model, planning and recruitment of participants to the ERGs, the support of the ward managers and the project group. Barriers and promotors found among clinicians included the following sub-categories: Expectations and pre-understandings of ERGs, understandings of a physician's job, challenges experienced by ethics facilitators. At the end of the study, when it was decided that the ERGs should be continued, the implementation strategies were remodeled by the participants to meet new challenges. CONCLUSION: The study of ERG implementation identified important structural and professional barriers and promotors that are likely to be relevant to anyone wanting to implement ethics support services across various types of healthcare services.

Involvement of patients' perspectives on treatment with noninvasive ventilation in patients with chronic obstructive pulmonary disease-A qualitative study.

AIMS AND OBJECTIVES: To clarify chronic obstructive pulmonary disease patients' perspectives on treatment with noninvasive ventilation and develop management strategies for the treatment based on these perspectives. BACKGROUND: The effect of treating chronic obstructive pulmonary disease patients with noninvasive ventilation is well-documented, as is the problem of patient difficulties in tolerating the treatment. Knowledge of how patients with chronic obstructive pulmonary disease experience and evaluate treatment with noninvasive ventilation is limited; therefore, more information of patient perspectives is needed to develop treatment practices in respiratory medicine. METHOD: This study is based on critical psychological practice research. DESIGN: A co-researcher group comprising diverse health professionals was set up and headed by the principal researcher. The group convened seven times over 12 months to develop new management strategies based on patients' perspectives on noninvasive ventilation. Health professionals contributed with experience-based perspectives, and the researcher contributed with data from participant observation in the department and semi-structured interviews with 16 patients and four relatives. RESULTS: Interviews revealed that patients with chronic obstructive pulmonary disease regarded noninvasive ventilation treatment positively even though they experienced discomfort and anxiety. Patients' perspectives revealed that patients with chronic obstructive pulmonary disease conduct their everyday lives with chronic obstructive pulmonary disease looking at chronic obstructive pulmonary disease as a basic life condition rather than an illness. This approach had a major impact on chronic obstructive pulmonary disease patients' attitudes to noninvasive ventilation treatment and hospitalisation. CONCLUSION: Investigation of patient perspectives generated results that were highly productive in facilitating multidisciplinary collaboration and in developing and sustaining new management strategies. Critical psychological practice research facilitated ongoing development of clinical practice related to noninvasive ventilation treatment. RELEVANCE TO CLINICAL PRACTICE: Focus on patients' perspectives in treatment with noninvasive ventilation resulted in the development of new management strategies regarding patient care, joint ward rounds, and in addition, one room at the ward, to which a nurse was assigned, was designated for chronic obstructive pulmonary disease patients treated with noninvasive ventilation.

Development of non-invasive ventilation treatment practice for patients with chronic obstructive pulmonary disease:Results from a participatory research project.

OBJECTIVES: Non-invasive ventilation treatment for patients with acute exacerbation of chronic obstructive pulmonary disease is well documented. Communication with patients during treatment is inhibited because of the mask, the noise from the machine and patient distress. Assessing life expectancy and identifying end-stage chronic obstructive pulmonary disease posed difficulties and caused doubts concerning initiation and continuation of non-invasive ventilation as life-sustaining treatment. Health professionals expressed a need for knowledge of patients' perspectives and attitude towards non-invasive ventilation. METHODS: The study adheres to principles of Critical psychological practice research. Data on patients' and health professionals' perspectives were obtained from observations from the ward and semi-structured interviews with 16 patients. A group of health professionals was set up to form a co-researcher group. The co-researcher group described and analysed treatment practice at the department, drawing on research literature, results from observations and patients' interviews. RESULTS: Interviews revealed that 15 patients evaluated treatment with non-invasive ventilation positively, although 13 had experienced fear and 14 discomfort during treatment. The co-researcher group described health professionals' perspectives and analysed treatment practice based on data from patients' perspectives developing new management strategies in clinical practice with non-invasive ventilation. CONCLUSION: The participatory approach enabled continuous and complementary development of knowledge and treatment practice. The investigation of patient perspectives was particularly productive in qualifying cooperation among health professionals. The study resulted in preparing, and implementing, new clinical strategies.

Who and What Does Involvement Involve? A Multi-Sited Field Study of Involvement of Relatives in Danish Psychiatry.

This article gives an account of aspects of a multi-sited field study of involvement of relatives in Danish psychiatry. By following metaphors of involvement across three sites of the psychiatric system-a family site, a clinical site and a policy site-the first author (J.O.) investigated how, and on what grounds, involvement of relatives is perceived in Danish psychiatry. Paradoxically, the current understanding of involvement of relatives fails to take into consideration the perspectives of the relatives per se and families that were being studied. By analyzing involvement from a discourse theoretical perspective laid out by Ernesto Laclau and Chantal Mouffe, the aim of this study is to show how the dominant discourse about involvement at the political and clinical sites is constituted by understandings of mentally ill individuals and by political objectives of involvement. The analysis elucidates how a psycho-ideological discourse positions the mentally ill person as weak, incapable, and ineffective. By contrast, the supporting relative is positioned as a strong, capable, and effective co-therapist. Furthermore, the analysis considers how this dominant discourse of involvement is constituted by a broader discourse of neoliberalism and market orientation, which justifies involvement as a subtle institutionalization of social control. The article highlights that the role of the relative as a co-therapist may be contested by the families' discourse, which emphasizes issues concerning the responsibility toward the mental health of the ill individual as well as toward the psychological milieu of the family.

Women's perspectives and experiences on screening for osteoporosis (Risk-stratified Osteoporosis Strategy Evaluation, ROSE).

UNLABELLED: This study aimed to investigate women's perspectives and experiences with screening for osteoporosis. Focus groups and individual interviews were conducted. Three main themes emerged: knowledge about osteoporosis, psychological aspects of screening, and moral duty. Generally, screening was accepted due to life experiences, self-perceived risk, and the preventive nature of screening. PURPOSE: The risk-stratified osteoporosis strategy evaluation (ROSE) study is a randomized prospective population-based trial investigating the efficacy of a screening program to prevent fractures in women aged 65-80 years. It is recommended by the World Health Organization that a set of criteria are met before a screening program is implemented. This sub-study aims to investigate women's perspectives and experiences with the ROSE screening program in relation to the patient-related criteria recommended by the World Health Organization. METHODS: A qualitative study was carried out involving 31 women by way of 8 focus group interviews and 11 individual interviews. Principles from critical psychology guided the analysis. RESULTS: Women's perspectives and experiences with the screening program were described by three main themes: knowledge about osteoporosis, psychological aspects of screening, and moral duty. The women viewed the program in the context of their everyday life and life trajectories. Age, lifestyle, and knowledge about osteoporosis were important to how women ascribed meaning to the program, how they viewed the possibilities and limitations, and how they rationalized their actions and choices. The women displayed limited knowledge about osteoporosis and its risk factors. However, acceptance was based on prior experience, perceived risk, and evaluation of preventive measures. To be reassured or concerned by screening was described as important issues, as well as the responsibility for health-seeking behaviour. CONCLUSION: In general, the women accepted the screening program. No major ethical reservations or adverse psychological consequences were detected. Only a minority of women declined screening participation due to a low perceived risk of osteoporosis.

The meaning of activity and participation in everyday life when living with hand osteoarthritis.

OBJECTIVE: The aim of this paper is, first, to advance the understanding of participation and its relationship to activity; second, to add to discussions or understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity connected to the conduct of everyday life in people with hand osteoarthritis (hand OA). METHODS: Semi-structured interviews were carried out with 31 men and women living with hand OA because existing research on this group and the challenges they encounter in their everyday life is sparse. The analytical process was inspired by Interpretive Phenomenological Analysis and informed by critical psychology and social practice theory as interpretive frameworks. RESULTS: Our empirical findings indicate that persons with hand OA experience participation restrictions in their everyday lives and activity limitations as aspects of participation. This indicates that activity and participation are experienced as interrelated across social contexts. CONCLUSIONS: Participation in everyday life seems complex: what to participate in, how to participate and with whom seem of importance for subjective meaning-making. Implications are discussed in relation to methodology, the empirical findings, and clinical practice.

Activity problems in everyday life--patients' perspectives of hand osteoarthritis: "try imagining what it would be like having no hands".

PURPOSE: To explore first-person perspectives on activities and participation in everyday life among people with hand osteoarthritis (OA). METHOD: Semi-structured interviews were carried out with 5 men and 26 women of different ages living with hand OA. Supplemental data were collected via photo-interviews of two of the men and nine of the women. The analytical process was inspired by the interpretive phenomenological analysis and informed by the interpretive frameworks of critical psychology and social practice theory. RESULTS: Empirical findings indicate that persons with hand OA experience activity problems and participation limitations in the conduct of everyday life. Activity problems were related to self-care, paid work, as well as leisure activities. The participants also reported employing different strategies attempting to overcome the challenges of their everyday lives in order to keep actively performing valued activities. They reported environmental support of utmost importance for these attempts. Social participation in networks was also reported to be affected by the participants' activity problems. CONCLUSIONS: Arranging everyday life is complex and is carried out in structures of social practice. A supportive physical and social environment facilitates participation. The findings highlight the importance of paying attention to individual needs in rehabilitation processes.

Attitudes of COPD patients towards tele-rehabilitation: a cross-sector case study.

The aim of this paper is to describe patients' attitudes towards tele-rehabilitation in the Danish TELEKAT (for Telehomecare, Chronic Patients and the Integrated Healthcare System) project, in order to better understand patients' behavior when performing tele-rehabilitation activities in home surroundings. A total of 111 COPD patients were included in the study, and they were randomized into an intervention group (n = 60) and a control group (n = 51). However, a non-randomized design was used to analyze the qualitative perspectives of the patients' attitudes towards tele-rehabilitation. From the intervention group, 22 COPD patients were selected for qualitative interviews and participant observation in their homes. The theoretical framework for this study is based on learning theory and the "communities of practice" approach inspired by Etienne Wenger. COPD patients exhibit four types of attitudes about their tele-rehabilitation: indifference, learning as part of situations in everyday life, feeling of security and motivation for performing physical training. The patients express the view that they circulate between these attitudes depending on their physical and emotional state as they perform their training. The COPD patients and healthcare professionals have created a community of tele-rehabilitation across sectors, exchanging experiences, stories and strategies for how to manage rehabilitation in home surroundings.

Patients' use of self-monitored readings for managing everyday life with COPD: a qualitative study.

OBJECTIVE: Effects of self-monitoring depend on how patients engage with readings and how this engagement is used for managing chronic disease. This article reports on a study of how chronic obstructive pulmonary disease (COPD) patients made use of readings during 16 weeks of self-monitoring. PATIENTS AND METHODS: Semistructured interviews were conducted with 22 COPD patients three times each: at the beginning, halfway through, and after the monitoring device was collected. Spouses of nine interviewees were present during one or more interviews. The analysis of how patients used self-monitored readings was based on critical psychology. RESULTS: Patients used readings to monitor bodily condition, to judge whether and when to contact health professionals, to communicate with health professionals about health management, to revise planned activities, to engage close relatives, and to motivate exercise and other health behavior. Self-monitoring can produce a sense of security as readings provide grounds for explaining symptoms and widen the scope of possibilities for taking action. Patients experienced readings as encouraging, reassuring, depressing, worrisome, and at times disturbing. A few patients involved themselves with readings in ways that are emotionally challenging and contrary to medical advice. Reasons for not making use of self-monitoring include good health or not regarding monitoring as relevant at the time. CONCLUSIONS: Results can qualify the support health professionals offer in relation to patients' self-monitoring and self-management.

Handling knowledge on osteoporosis--a qualitative study.

The aim of this qualitative study was to increase understanding of the importance of osteoporosis information and knowledge for patients' ways of handling osteoporosis in their everyday lives. Interviews were performed with 14 patients recruited from two English university hospitals and 12 patients from a Danish university hospital. Critical psychology was used as a theoretical framework for the data analysis, which aimed at shedding light on patients' ways of conducting everyday life with osteoporosis. The themes that emerged from the analysis showed that life conditions influenced the way in which risk, pain and osteoporosis were handled. Everyday life was also influenced by patients' attitude to treatment. The patients who were experiencing emotional difficulties in handling osteoporosis were not those suffering from severe osteoporosis and fractures. Approaches to living with knowledge of future fracture risk varied according to the individual patient's resourcefulness and experiences.

Men's experiences of living with osteoporosis: focus group interviews.

Osteoporotic fractures in men are an increasing public health problem. Male osteoporosis is often a low-prioritized issue, however. To examine men's experiences with osteoporosis and how they handle osteoporosis in their everyday lives, the authors collected data from four focus groups with a total of 16 men aged 51 to 82 years diagnosed with osteoporosis. Critical psychology was used as a theoretical framework for the data analysis, which aimed to elicit information about the men's daily lives. The men handled osteoporosis in different ways using different strategies. The authors found patterns that resonated with the social construction of hegemonic masculinity as displayed through the men's fear of weakness and endurance through physical activity, as well as identity construction through active decision making in relation to health. Understanding and implementation of these issues is necessary in the development of preventive, screening, and monitoring strategies, as well as in the clinical care of men with osteoporosis.

Moral landscapes and everyday life in families with Huntington's disease: aligning ethnographic description and bioethics.

This article is concerned with understanding moral aspects of everyday life in families with Huntington's Disease (HD). It draws on findings from an empirical research project in Denmark in 1998-2002 involving multi-sited ethnography to argue that medical genetics provides a particular framework for conducting life in an HD family. A framework that implies that being informed and making use of genetic services expresses greater moral responsibility than conducting life without drawing on these resources. The moral imperative of engagement in medical genetics is challenged here by two pieces of ethnographic analysis. The first concerns a person who, as described by a family member, does not engage with medical genetics but who brings to the fore other culturally legitimate concerns, priorities and areas of responsibility. The second figures a genetic counselling session where neither the knowledge nor the imagined solutions of medical genetics are as unproblematic and straightforward as might be thought. To assist our understanding of the moral aspects of living with severe familial disease, the ethnographic analysis is aligned with bioethical reflections that place the concrete concerns of those personally involved centre stage in the development of theoretical stances that aim to assist reflections in practice.