Participation des acteurs, pratiques de chercheurs.

INTRODUCTION: Professional activity represents an injunction to participate in the collective and sustains our identity. Being deprived of it can lead to social exclusion. At the same time, the injunction to autonomy is prevalent in our society. The disabled person can suffer from social stigmatization and find himself in tension between disability/autonomy/work. Work is then essential to identify oneself as a worker and not as a dependent person. PURPOSE OF RESEARCH: The participatory research presented has a dual objective: to give a voice to a stigmatized population - disabled workers - and their families; to understand and analyze with them the strategies used to work or remain in employment and the impact of these strategies on health at work and the relationship to risks. RESULTS: Exchanges between the peer Group and the scientific team enabled us to refine the initial questions, to reformulate analyses, to modify communication supports, to make them more acceptable and accessible. This participatory approach has modified our research practices by guaranteeing that the people concerned by the research become actors in it. CONCLUSIONS: For populations suffering from symbolic domination, participatory research makes it possible to restore the confidence of individuals and the legitimacy of experiential knowledge.

"Card sorting": a tool for research in ethics on treatment decision-making at the end of life in Alzheimer patients with a life threatening complication.

BACKGROUND: End stage dementia is a particularly difficult aspect of care for patients with Alzheimer's disease and related dementias. In care institutions, caregivers and family are concerned by treatment decision-making for an acute life threatening complication occurring in Alzheimer patients at the end of life. How should the best treatment pathway be decided: to treat or not to treat? Which arguments are used for decision-making? These are mainly ethical questions which are currently difficult to express and investigate. METHODS/DESIGN: Cross sectional multicentre study of clinical cases involving 67 health centres (university hospitals, general hospitals, local hospitals and homes for the elderly) in the east of France. The method was based on the "card sorting" technique, with a set of 36 cards, each labelled with a different item relating to arguments for treatment decision-making. For each clinical case, medical staff and carers expressed in a meeting the pieces of information which they believed had been taken into account in the decision. Each participant received a card game, selected fewer than ten and ranked them according to the importance they attached to each one. All selected cards were then put on the table anonymously for participants, respecting the order of importance of the cards in each pile. Lastly, all games were photographed together in order to analyse occurrence and order frequencies. The cards were then classified on the table by frequency to open the discussion. Discussion time, which was conducted by the head carer of the department, concerned the clinical situation of the patient based on the shared responses. DISCUSSION: During team meetings, the "card sorting" method was quickly adopted by professionals as a tool to assist with discussion beyond the context of the study. The participants were not compelled to mention their feelings in relation to a case, and it is significant that the anonymity which we tried to maintain so that each person felt "listened to" without value judgement was very often discarded by the individuals themselves.