Research on stillbirth: back and forth between the researcher’s and mother’s perspective

In January 2022, I defended my doctoral thesis on maternal mental health after traumatic childbirth. Two months later, I gave birth, at 35 weeks of pregnancy, to my stillborn daughter. While I was a psychologist and a researcher in perinatal mental health, I became a bereaved mother myself. Tables had turned: suddenly, I was not the one wearing the white coat. This loss – and how I and others dealt with it in the ensuing months – was the starting point for new reflections on my research work. I would like to share them, especially with those who, like me, work on perinatal mental health but not necessarily on stillbirth¹ and perinatal loss.

The death of a child is a tragedy and we, as professionals, do our utmost to protect the privacy of the bereaved parents. One consequence of this concern is that we usually exclude them from our studies. Yet, as someone who has now experienced both sides of the fence, I would like to question the premises of this policy.

We tend to exclude parents who have suffered perinatal loss from our studies for two reasons. Firstly, for scientific reasons: including families affected by a stillbirth in studies that do not specifically focus on this subject may result in too much sample heterogeneity. However, excluding them – either by not inviting them to participate or by excluding them from the studies they had started to participate in – robs us of critical scientific data. Many observational studies, including cohort studies, have the unique opportunity to collect data on the trajectory of families experiencing stillbirth, sometimes even before it occurs. They might provide valuable insights that cannot be gained through studies retrospectively targeting bereaved families, and yield so much knowledge about the needs of these families, as well as how to better support and train clinicians. Including parents who have experienced stillbirth more systematically may of course involve methodological adjustments (e.g. removing baby-related measures), but that does not justify our practice of excluding them a priori.

Secondly, we exclude parents experiencing perinatal loss for ethical reasons. These ethical reasons had always been self-evident to me, but my view has changed since the birth of my daughter. Clearly, some bereaved parents will find it too painful to participate in studies focusing on the perinatal period. However, for many of them, participation is very meaningful (‘I think that it could help other parents’, ‘In this way, something positive will remain from our experience’, …). Even more importantly, it also is an opportunity to assert their identity as parents. By excluding these families from perinatal mental health studies because they have lost a baby, we contribute to rendering their experience invisible and reinforce the social taboo surrounding perinatal bereavement, which they will already face in many other ways (Burden et al., 2016). Because of this veil of silence, friends, relatives, and society overlook the fact that stillbirth often involves dealing with lactation, postpartum bleeding, or perineal rehabilitation – the usual aftermath of any pregnancy. All this remains overlooked or hidden, as if parenthood ends when the child dies. By excluding bereaved parents and their families from our studies, we reinforce and might even appear to endorse this taboo and the ignorance that it entails in society. In the end, in the name of ethics, are we not confusing the need for privacy with abandonment (Ellis et al., 2016)?

Fundamentally, the real barrier often seems to be our fear, as researchers, of hurting bereaved families. Most parents who have experienced stillbirth are indeed confronted with painful situations – such as hearing a neighbour saying that she would have killed herself if she had lost her baby or, more commonly, all the people who systematically avoid the subject. The risk of being tactless does exist but, in the context of our studies, I think it is relatively low. Unlike the above-mentioned people, we are trained professionals with experience and expertise in perinatal mental health research. While this does not completely protect us from a clumsy word, let us not underestimate the competences we have acquired to approach families during the perinatal period, whether or not they are experiencing difficulties. Although the subject of stillbirth may seem particularly daunting, it is ultimately the same skill base that is needed to work with bereaved parents. Thus, we should have more confidence in our capacity to engage with them in a sensitive way. It is also worth remembering that parents experiencing stillbirth are in any case confronted with the raw reality of what is happening to them, whether we include them in our studies or not. The facts are there, they are already known, so there is no reason to be afraid of naming them and let our apprehensions take over. By using simple and respectful words that show our concern to understand their experience, and by inviting parents to share their experience through participating in our studies, we may transmit much-needed positive signals of recognition and acknowledgement – even to those who decline our invitation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. In this editorial, stillbirth refers, as defined by the World Health Organisation, to the death of a child after 28 weeks of pregnancy, before or during birth (World Health Organisation, 2023). However, most of the remarks would also apply to deaths occurring earlier in pregnancy or, more broadly, to any perinatal loss. Furthermore, please note that 84% of stillbirths occur in low- and lower middle-income countries (World Health Organisation, 2023) thus my experience is, in that respect, not representative.