What Motivates Parents to Continue a Pregnancy after a Life-Limiting Fetal Diagnosis: A Qualitative Study of Parents

International audienceContext: Despite their painful context, the observations and recommendations of studies of perinatal professionals have shown the existence of institutional barriers to the performance of perinatal palliative care (PPC), sometimes linked to these professionals’ moral judgments. This may impede their communication with parents - presentation of management options and decisionmaking - and the concrete performance of PPC.Objective: This study analyzes the motives for which women or couples continue pregnancies after the diagnosis of a lifelimiting fetal disorder (LLFD).Methods: Qualitative study. Discourse analysis of internet posts written by parents on the internet forum of a parents’ association. Most families underlined the importance of spending time with their baby, of getting to know them during the pregnancy and if possible after their birth. These families’ priority is the opportunity to experience and fully exercise their parental responsibilities in making decisions for this unborn infant: showing a personal desire that, insofar as possible, their baby should not suffer and should be welcomed with love. Their child’s lifetime, often brief, is valued as a time of meeting and of love, whether in utero or after birth; they report they attribute little importance to its duration. Avoiding a decision to end the child’s life voluntarily, regardless of his or her prognosis for survival, is also decisive for many parents, even though they cannot prevent the baby’s death due to the disease. A minority mention that this decision is motivated by the hope of a prognosis that will be better than expected, or that the diagnosis will not be confirmed, or a singularly better individual outcome. These cases manifested more of an opening towards a positive surprise, than a lack of confidence in the medical prediction. Religion was not mentioned as an argument for choosing PPC in our study.Conclusion: Parental motivations to continue pregnancies diagnosed prenatally as LLFD are centered on the early bond with the unborn baby, the consideration of his or her full existence as a person, and the prevention of future regrets. These motivations do not appear to be related to religious beliefs or lack of confidence in medical diagnosis/prognosis, Parental duty and love move parents towards this decision. Perinatal professionals should acknowledge these motivations to better understand parental choice and support them