About
PERINAT in brief
PERINAT is a 4-year research project funded by the Agence Nationale de la Recherche in France. The project is based on the work of twelve scholars in the field of linguistics and statistics from the Universities of Lille, Birmingham and Naples ‘Federico II’. PERINAT focuses on the discourses surrounding perinatal death, which is a broad term encompassing stillbirth, induced abortion following the diagnosis of lethal anomaly or rare disease, neonatal death and cases of palliative care for newborns with a life-limiting condition.
The suffering that a family struck by perinatal grief has to endure is exacerbated by the silence and social isolation that surrounds this event, to the point that perinatal death is also referred to as the “silent” or “invisible” loss (Lang et al. 2011). This taboo remains deeply entrenched in private and public communication, despite the fact that perinatal death is not uncommon. According to statistics from the World Health Organisation (WHO), in 2018, 10.6 in every 1000 pregnancies in France ended with stillbirth or death in the first week of life, with similar figures across the EU1.
Perinatal death can have detrimental long-term effects on parents’ lives, sometimes as long as 5–18 years (Gravensteen et al. 2012), with a higher likelihood of complicated grief (Lundorff et al. 2017) and predictably negative consequences on professional performance and social roles in general (Hazen 2009). In the light of these issues, increasing social visibility of perinatal loss (Keeble et al. 2018) and improving bereaved parents’ experiences of care and communication seems to be crucial to lessen the risk of dysfunctional grief and the consequences that the latter may trigger at personal and socio-economic level.
For most bereaved parents, their first communication experience about the loss takes place at the hospital. Patients are influenced from the onset by healthcare professionals' discursive practices, which have an effect on their overall bereavement experience (Miller 2010; Semino et al. 2018). However, complex and emotionally-charged experiences, such as pregnancy loss, may lead to a feeling of “epistemic injustice” (Fricker 2007) on the part of the patient: the idea that the absence of appropriate words to express one’s experience interferes with the ability to understand this experience and make it intelligible to others. In this respect, metaphors play an important, and potentially beneficial, role in the experience of people facing emotionally challenging events (Semino et al. 2018) as they facilitate understanding and promote patients’ adaptation and positive self-regard (Reisfield & Wilson 2004). By developing higher awareness of metaphoric speech among bereaved parents, healthcare practitioners (HCPs) may also gain insight into the cognitive and affective underpinnings of their experience, and this may help make sense of their needs.
PERINAT seeks to further understanding of the linguistic choices made by bereaved parents in order to improve their communication experience in socio-medical contexts. To pursue this aim, the research project aims to observe and identify a number of linguistic aspects in the the narrative of bereaved parents, with specific reference to: a) metaphor as a commonly-used resource for expressing the inexpressible b) the use of neologisms to denote bereaved parents and their prematurely deceased babies. The reason for this dual focus is that while metaphors provide insights into people’s extant conceptualisations of their experiences, neologisms are a powerful means of creating and voicing new concepts by giving them a linguistic label (reification). These two elements are closely related as neologisms themselves often have a metaphorical basis.
The project is conducted by means of interviews and questionnaires submitted to bereaved parents in France and Dutch-speaking Belgium. The outputs from this project will be used to inform and improve the support offered by HCPs who are likely to come across a bereaved parent in their professional capacity. In addition to fundamental scientific insights, this project further aspires to bring the results of the research to the larger public and thus break the silence that surrounds perinatal death in private and public communication.
For further reading, find the full research proposal.
1https://gateway.euro.who.int/en/indicators/hfa_84-1170-perinatal-deaths-per-1000-births/ (Last accessed: March 8, 2023).
References
Fricker, M. (2007). Epistemic injustice: power and the ethics of knowing. Oxford: Oxford University Press.
Gravensteen, I.K., Helgadottir, L.B., Jacobsen, E.M., Sandset, P.M., Ekeberg, Ø. (2012). Long-term impact of intrauterine fetal death on quality of life and depression: a case–control study. BMC pregnancy and childbirth, 12(1), 1–9.
Hazen, M. A. (2009). Recognizing and responding to workplace grief. Organizational
Keeble, C.J., Loi, N.M., Thorsteinsson, E.B. (2018). Empathy and the public perception of stillbirth and memory sharing: an Australian case. Frontiers in Psychology, 1629.
Lang, A., Fleiszer, A. R., Duhamel, F., Sword, W., Gilbert, K. R., Corsini-Munt, S. (2011). Perinatal loss and parental grief: the challenge of ambiguity and disenfranchised grief. Omega: Journal of Death and Dying, 63, 183–196.
Lundorff, M., Holmgren, H., Zachariae, R., Farver-Vestergaard, I., O’Connor, M. (2017). Prevalence of prolonged grief disorder in adult bereavement: a systematic review and meta-analysis. Journal of affective disorders, 212, 138–149.
Miller, R. S. (2010). Speak up: 8 words and phrases to ban in oncology!, Oncology Times, 32(12), 20.
Reisfield GM, Wilson GR. (2004). Use of metaphor in the discourse on cancer. Journal of Clinical Oncology, 1/22(19), 4024–7. doi: 10.1200/JCO.2004.03.136. PMID: 15459229.
Semino, E., Z. Demjen, Demmen, J. (2018). An integrated approach to metaphor and framing in cognition, discourse, and practice, with an application to metaphors for cancer. Applied Linguistics, 39(5), 625–645.
