In ethical theory, different concepts of autonomy can be distinguished. In this article we explore how these concepts of autonomy are combined in theory in the citizenship paradigm, and how this turns out in the practice of care for people with acquired brain injury. The stories of a professional caregiver and a client with acquired brain injury show that the combination of various concepts of autonomy in practice leads to tensions between caregivers and clients. These dynamics are discussed from a (...) care ethics perspective, stressing the importance of relationships and interdependence, as well as paying attention to various, sometimes conflicting, perspectives in a deliberative dialogue. (shrink)

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. Participants and research context: One case (...) was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management. (shrink)

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for (...) and to matter to others since these constitute an essential aspect of being human. (shrink)