Social representations associated with the words "palliative care'' among the general public

Purpose. - Palliative care is under development, but the announcement of palliative care remains a disruption and primary care physicians have troubles using these terms. There are no common representations of palliative care between patients and caregivers, and the co-building of a shared vision is a determining factor in the success of care. The objective of this study was to explore the social representations associated to the words "palliative care'' among the general population. Method. - This study was based on a qualitative survey by 16 semi-directed interviews conducted between July 2016 and April 2017. A complete transcription of interviews and content analysis were realized with coding by division into units of meaning. Results. - The interviewees said they did not know the subject. Palliative care was focused on patients described as being in a precarious physical state, not able to communicate and dependent. For the majority of interviewees, palliative care was provided just before the death. Their goal was physical and psychological well-being, global care, but also the consideration of close relatives. Nurses and nursing auxiliaries were easily imagined as being in contact with patients, but it was more difficult for physicians, who were less concerned according to interviewed people. Emotions were often negative ( fear, anguish, sadness). Conclusion. - Representations were rich and heterogeneous, based on personal experiences. Representations are close from the palliative care's definition of the Societe francaise d'accompagnement et de soins palliatifs, but with nuances. These results open up possibilities for thinking on the means and the need to inform patients and their families about the purpose and objectives of palliative care. (C) 2019 Published by Elsevier Masson SAS.