Founded in 1996, Famiréa is a multidisciplinary research group whose studies focus primarily on the experiences of families and loved ones of patients hospitalized in intensive care units. The group conducts clinical research with the goal of improving the reception, support, and communication with families. Accredited as an F-CRIN network of excellence since 2025, Famiréa coordinates studies in nearly 10% of intensive care units in France, involving both healthcare teams and families.
Famiréa: Improving the Experience for Families and Loved Ones of Patients in the ICU
The Famiréa research group is based at Saint-Louis Hospital (AP-HP), Université Paris Cité, and is affiliated with the Saint-Louis Research Institute (Inserm, UMR 1342).
Within the network, doctors, healthcare providers, and researchers develop communication and support strategies to reduce mental health symptoms (anxiety, depression, post-traumatic stress disorder) that complicate the acute illness and the experience of intensive care for patients’ families.
Since its creation, Famiréa has received support from the PHRC, learned societies, the Fondation de France, the French Biomedicine Agency, and the National Research Agency (ANR).
Famiréa's activities are organized around five complementary areas aimed at improving the care and support provided to the families of patients in intensive care:
- Developing innovative clinical research, based on a mixed-methods approach combining advanced statistics (observational studies, multicenter interventional trials) and qualitative research, particularly through semi-structured interviews. The contribution of the humanities and social sciences, from a multidisciplinary perspective, enriches this framework and helps identify new areas for improvement. This work has resulted in numerous publications in general and specialized journals, international collaborations, and active participation in international consensus conferences.
- Training healthcare professionals on issues related to supporting families, through courses offered at the graduate and postgraduate levels of healthcare education as well as through continuing education. As part of this initiative, a Famiréa University Diploma (DU) was created in 2024 in partnership with the Faculty of Health at Paris Cité University, within the framework of the FAME hospital-university research program. A MOOC is also currently being developed to broaden access to this knowledge. In addition, a multidisciplinary thematic day is organized every year.
- Contribute to shaping national and European research on the families of intensive care patients by collaborating closely with other coordinating groups and French and international research networks.
- Provide direct support to patients’ loved ones, notably through the creation in 2019 of a toll-free helpline dedicated to families dealing with hospitalization in the ICU.
- Developing and disseminating informational and educational resources, by creating, validating, and making educational tools available to families to better support them throughout the care journey.
Furthermore, as part of a commitment to continuous innovation, Famiréa regularly responds to national calls for proposals (PHRC, PREPS, PHRIP, etc.) to identify and evaluate new solutions that could improve the experience of families of patients in intensive care.
Organization
Famiréa is co-directed by Prof. Elie Azoulay, an intensive care physician, and Nancy Kentish-Barnes, a sociologist, in the Department of Intensive Care Medicine at Saint-Louis Hospital.
Coordinated by Aliénor d’Alcantara, project manager, Famiréa includes about sixty intensive care units spread throughout the country:
Scientific Expertise
Famiréa offers a wide range of expertise in clinical research, intensive care and resuscitation, psychiatry, sociology, psychology, and genetics (biobank).
Mixed-methods approach:
- Quantitative methods: observational studies, randomized trials, platform trials
- Qualitative methods: interviews, observations, focus groups
Clinical Research Expertise:
- Compliance with Good Clinical Practice
- Sponsoring or affiliated center: single-center/multicenter trials, randomized, platform trials, controlled trials
- Operational support for clinical research teams at centers (clinical research departments within hospitals)
- Contribution to the establishment of registries and biobanks
Completed Projects and Notable Results
Famiréa is contributing to tangible advances in clinical research, with several studies now completed. Here are a few examples:
As part of a French multicenter RCT involving 22 intensive care units, 126 families were randomized to receive or not receive an end-of-life conference designed to prepare loved ones for the patient’s death, answer their questions, listen to them, and acknowledge the importance of their presence. Family members who received this intervention had significantly lower rates of post-traumatic stress, anxiety, and depression.
As part of a cluster-randomized controlled trial (RCT) involving 34 intensive care units, 875 families were enrolled. In the intervention arm, family members received a three-stage support strategy (before, during, and after death) involving the patient’s physician and nurse. Relatives in the intervention group experienced significantly less prolonged grief and post-traumatic stress six months after the death.
602 families of patients hospitalized in 23 intensive care units for COVID-19 were compared to families of patients hospitalized for pneumonia or the flu. Symptoms of post-traumatic stress, anxiety, and depression were significantly higher three months after discharge from the ICU among the families of patients infected with COVID-19.
Azoulay E, Resche-Rigon M, Megarbane B, et al. Association of COVID-19 Acute Respiratory Distress Syndrome With Symptoms of Posttraumatic Stress Disorder in Family Members After ICU Discharge. JAMA. 2022;327(11):1042–1050. doi:10.1001/jama.2022.2017
Current Projects
The network is currently involved in several multicenter studies aimed at advancing knowledge and clinical practice, including:
A project of the Famiréa group, RHU FAME—which stands for “Improving FAMily members’ Experience in the intensive care unit” (ICU)—is a five-year project coordinated by Université Paris Cité that brings together academic, hospital, and industry stakeholders with the goal of improving the experience of families of patients hospitalized in intensive care.
In fact, in France, more than one million families are faced each year with the hospitalization of a loved one in the ICU, and among them, one-third are at high risk of developing post-traumatic stress disorder (50% if the patient dies), resulting in a considerable cost to families and the system as a whole.
The FAME consortium, led by Prof. Elie Azoulay, consists of 11 partners: Université Paris Cité, the project’s coordinating institution; AP-HP (Famiréa); Nantes University Hospital, Le Mans University Hospital, Montpellier University Hospital, AP-HM, CEA, USPN, CNRS, INSERM, and General Electric (industrial partner).
The FAME project aims to prevent post-traumatic stress disorder (PTSD) among family members of patients hospitalized in intensive care units using a comprehensive approach: identifying risk factors for PTSD using an algorithm that incorporates clinical and biological (Omics); assessing the cost of PTSD and its prevention; developing innovative informational and educational materials (comic books, videos, virtual reality), the effectiveness of which will be tested in a randomized controlled trial; offer comprehensive support via a dedicated platform (teleconsultation, online therapy, hotline, support from a virtual assistant); and provide training for healthcare providers.
Contact the network
To learn more about the network and its latest news:
- Website: https://www.famirea.org/
- Instagram: famireafr
- Facebook: Famiréa Research Group
- LinkedIn: Famiréa
You can also contact the network by email at the following address: famirea.recherche.sls@aphp.fr
