Death and disability in neonates and children: Representations and challenges in the French society

Background. - The rapid development of new medical technologies has also led to changes in attitudes in end-of-life patients. Frequency of death, way of dying and representation of death have changed. The objective of our study was to assess representations and challenges of neonatal and infant death in the French contemporary society, as well as the sociocultural determinants shaping them. Subjects and methods. - We conducted a qualitative descriptive study using thematic analysis of data from twelve semi-guided interviews. These were performed amongst experts in human and social sciences, medical and paramedical personnel and representatives of religious faith. Results. - Death and disability lead to negative representations in French society, such as denial, fear, exclusion and occultism. As a small human being, the infant has a special status, due to his vulnerability and dependency. He is subject to subjective projections and protections. The death of an infant is experienced as an unendurable trauma, a disruption to the natural generational order. Ethical considerations on end of life must take the possible future handicap into account. In such a context, the liminality in the approach to disability, acquires a critical standing. Conclusion. - This study brings data on the societal perception of the dying infant and prompts us to reflect on the ethical issues and challenges, particularly in the context of the risk of a future disability. (C) 2020 Elsevier Masson SAS. All rights reserved.