ABSTRACT
We present a case study of uneven participation in a focus group discussion with health care professionals involved in local ethical committees. We conclude that the status of the different participants did not give adequate space for full participation of the members involved. Two commentators were invited to comment on the case study to enable further reflection on the methodology used for the target group. The first reviewer investigated whether research should address power relations and hierarchies of knowledge encountered in the study process. She also discussed whether researchers should be held ethically and politically responsible for the consequences of producing relations and hierarchies. The second reviewer looked at what focus groups say about professional practices in hospitals, what participants are willing (or unwilling) to invest, and what are the conditions for setting up ethical reflection.
Subject(s)
Attitude of Health Personnel , Bioethics , Ethics, Research , Health Personnel , Hospitals , Power, Psychological , Research Design , Communication , Ethics Committees , Female , Focus Groups , Humans , Male , Qualitative Research , ThinkingABSTRACT
The French medical context is characterized by institutionalization of the ethical reflection in health care facilities and an important disparity between spaces of ethical reflection. In theory, the healthcare professional may mobilise an arsenal of resources to help him in his ethical reflection. But what happens in practice? We conducted semi-structured interviews with 22 health-care professionals who did and did not have recourse to clinical ethical committees. We also implemented two focus groups with 18 professionals involved in various spaces of ethical reflection in order to let them debate about a better way to organize ethical reflection in their institutional contexts. The qualitative analysis allows to us to underline the coexistence of different conceptions of ethics among health care professionals. We also observed that the participants in our study shared the experience of ethically problematic situations as roadblocks in the process of communication and decision-making. We therefore report the factors which favour or inhibit the ethical course leading to the resolution or at the very least soothing of the situation at hand. Finally, we discuss methodological issues and underline the fact that while the patient is at the heart of the professional's ethical preoccupations, this does not imply that they are actors in decisions that concern them.
Subject(s)
Ethics Committees, Clinical , Focus Groups , France , Health Personnel/ethics , Health Personnel/psychology , Humans , Interviews as Topic , Physicians/ethics , Physicians/psychology , Qualitative ResearchABSTRACT
The medical, psychological and social aspects of disorders of sex development (DSD) represent a challenge for the management of these patients. However, advances in our understanding of the etiology and genetics of this condition, novel surgical approaches and the growing influence of patient groups as well as wider recognition of ethical issues have helped improve the care of patients with a DSD. Importantly, a multidisciplinary approach involving specialists is crucial for understanding and treating such rare and complex cases. According to the recommendations of the Swiss National Ethical Commission, we shall use the term « Variation of Sex Development ¼ rather than « Disorder of Sex Development ¼ in this publication. This article addresses the care of DSD patients throughout development from the point of view of specialists in complementary fields.
La prise en charge des personnes avec une variation du développement sexuel (VDS) (disorder of sex development, DSD) est un défi tant sur le plan médical, psychologique que social. L'amélioration des connaissances étiologiques et génétiques, les nouvelles approches chirurgicales et l'influence tant des groupes de patients que de la Commission d'éthique suisse ont considérablement modifié la vision de la prise en charge de ces personnes durant ces dernières décennies. Une approche pluridisciplinaire et spécialisée est cruciale pour appréhender ces situations rares et souvent complexes. Le point de vue des différents spécialistes impliqués au long de la vie dans la prise en charge d'une VDS est abordé dans cet article.
