Family members' expectations and representations of palliative care: A pilot study

Objectives. - Family members and relatives play a key role in the quality of life of patients in palliative care units. However, their support and involvement might depend on their expectations towards palliative care and their representations of what healthcare professionals do in palliative care units. Regarding the lack of knowledge expressed by general French population towards palliative care, this pilot study aimed to investigate in a dynamic way family's expectations and representations of palliative care, in order to improve quality of life of patients and their family. Methods. - A qualitative design using semi-directives interviews was chosen for the purpose of this study. Relatives were interviewed in a French palliative care unit at patient admission and several days later in order to explore the dynamic nature of their expectations and representations. Results. - Eight relatives were included in the study and two completed a second interview. They expressed a similar expectation: experiencing something different from previous hospitalizations. Need of security arose in link with an abandonment fear for themselves and their family, and with a lack of knowledge regarding palliative care. Quality of relationship, especially with the referent doctor at the admission in the palliative care units, was experienced as an appropriate answer. Conclusion. - Doctor relatives relationship appears to be a key element to support families' need of security and information. A larger study would help to better understand what relatives go through during this difficult period and how healthcare professionals can best adapt their propositions. A relevant approach would be to focus on the impact of information about palliative care on family experiences. (C) 2019 Elsevier Masson SAS. All rights reserved.