BackgroundDespite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation.MethodsData were collected using a qualitative study involving multi-professional focus groups with health care providers and staff as well as personal narratives written by physicians and paramedical staff. A total of 35 medical and paramedical providers volunteered to participate in focus group discussions in three Palliative Care Units in two French hospitals and to write personal narratives.ResultsHealth care provider and staff opinions had to do with their professional stance and competencies when using midazolam and practicing sedation in palliative care. They expressed uncertainty regarding three aspects of the comprehensive care: biomedical rigour of diagnosis and therapeutics, quality of the patient/provider relationship and care to be provided. Focusing on the sedative effect of midazolam and continuous sedation until death, the interviewed health care providers examined the basics of their professional competency as well as the key role played by the health care team in terms of providing support and minimizing workplace suffering. Nurses were subject to the greatest misgivings about their work when they were called upon to sedate patients.ConclusionsThe uncertainty experienced by the carers with regard to the medical, psychosocial and ethical justification for sedation is a source of psychological burden and moral distress, and it has proved to be a major source of suffering in the workplace. Lastly, the study shows the uncertainty can have the positive effect of prompting the care team to devise ways to deal with it.
Résumé L’autoformation s’inscrit dans l’évolution des sociétés postindustrielles comme une nécessité pour développer une autonomie de plus en plus nécessaire dans l’accès au savoir et à la culture (auto-éducation permanente). Avec l’augmentation du temps libre et l’avènement d’une société des loisirs à la fin du XIX e siècle, la création du jeu de tennis devient un moyen privilégié, non seulement de se divertir ou de se détendre, mais aussi un moyen de formation pour quelques-uns. Le propos de notre recherche est de situer ce que peut être une autoformation par la pratique du tennis dans le recueil de récits de vie. Dans la lignée des travaux de linguistique de données textuelles, à l’aide du logiciel Alceste, nous analysons les récits issus d’entretiens de 42 joueurs classés de tennis. Nous pouvons à l’issue de l’analyse de contenu de récits de vie de joueurs experts dégager quelques dimensions d’une autoformation en liaison avec les variables sociologiques retenues (âge, sexe, milieu social, niveau de jeu). Les résultats obtenus montrent un système d’interactions entre ce qui relève de l’expérience des individus ou auto-apprentissage et un environnement favorable ou configuration. Souvent opposés, les deux processus – apprendre et enseigner ou transmettre – sont en fait les deux facettes d’une même réalité : la socialisation de l’individu. Les frontières entre les deux processus sont difficiles à dissocier.
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