The experience of stillbirth

Stillbirth has a significant impact on parents, health professionals and wider society and yet related research, policy and practice remains low-profile internationally. Worldwide, the stillbirth rate in 2015 was 18.4 stillbirths per 1000 total births¹ (Lawn et al., 2016). This rate varied considerably from country to country, although the majority of stillbirths (98%) occurred in low- and middle-income countries (LMIC). In high-income countries (HIC) the rate varied from 1.3 to 8.8 per 1000 births. The experience of stillbirths produces an under-recognised burden on health and well-being and there is an opportunity for psychology to provide leadership in supporting families and healthcare professionals through this experience. The role of psychology is not only evident because of the support needed for the estimated 4.2 million women who are living with depression associated with previous stillbirth (Heazell, Slassakos, & Blencowe et al. for the Lancet Ending Preventable Stillbirths Series study group, with the Lancet Ending Preventable Stillbirths investigator group, 2016), but also because even a brief overview shows many opportunities for psychosocial intervention.

The majority of stillbirths in HIC occur in the antepartum period and may be associated with preventable lifestyle factors such as obesity and smoking (Flenady, Wojcieszek, & Middleton et al. for the Lancet Ending Preventable Stillbirths study group & The Lancet Stillbirths in High-Income Countries Investigator Group, 2016). Social disadvantage also plays a role. In the UK, women who are pregnant and live in socially deprived areas are 50% more likely to experience a stillbirth or neonatal death compared to women who live in less socially deprived areas (Manktelow et al., 2016). Ultimately, the most challenging psychosocial problem is addressing the grief of parents which is largely hidden. In a systematic review of the psychosocial impact of stillbirth by Burden et al. (2016), a key theme identified in the meta-summary was feeling isolated and stigmatised as the experience of being a parent without a child was not recognised by society. Fathers especially reported feeling left out and marginalised by their experience.

In higher-income settings, approaches to supporting women following a stillbirth changed considerably during the 1990s when the approach of directly addressing the grieving process began to be addressed. A population-based survey by Radestad, Steineck, Nordin, and Sjogren (1996) in Sweden raised awareness of the importance of immediate sensitive management in preventing psychological complications after stillbirth. The findings highlighted the importance of promoting a quiet, supportive environment after the birth of the baby directly when a mother is supported to engage with her baby in whatever way she wants rather than being prescriptive about procedure and activity. Radestad et al. (1996) also raised concerns that the then relatively new approach of confronting the grieving process may raise problems if staff are inflexible in the application of care protocols. This concern is still very pertinent 20 years later. A systematic review which aimed to provide evidence to help understand and improve care after stillbirth found that maternity care staff identified a number of emotional, knowledge and system-based barriers to providing effective care (Ellis et al., 2016). These included not enough time, complexity of paperwork, being emotionally overwhelmed, the need for coping strategies such as avoidance and a lack of knowledge of cultural and social differences around the grieving process. Staff reported a lack of confidence in supporting bereaved parents, and while some reported the experience as rewarding, others recognised the need for more training and a more supportive working environment to help them support parents better.

Much less is known about experiences of stillbirth in LMIC; however, the review by Burden et al. (2016) separated out findings by country and found that women in LMIC countries reported being frequently blamed for the death of their babies, and feeling stigmatised and in some cases rejected through avoidance, divorce, physical abuse or being asked to leave their communities. So while research into stillbirth has not been highly visible, the voices of parents are emerging (Heazell et al., 2016; Redshaw, Rowe, & Henderson, 2014). The need for support is evident, but how to support parents in practice is less clear. Qualitative research often points to the importance of rituals for parents, including offering photographs and momentos and encouraging parents to hold their stillborn baby; however, these approaches are not well supported by evidence. A Cochrane review concluded there was insufficient evidence from randomised controlled trials on the benefit of interventions to support families after perinatal loss (Koopmans, Wilson, Cacciatore, & Flenady, 2013).

Conducting trials in the area is fraught with problems because of the sensitive nature of stillbirth, lack of rigorous measurement of psychosocial outcomes and also because of the small sample sizes in trials, so other designs are necessary to identify the impact of interventions. An analysis of population-based data from the UK conducted by Redshaw, Hennegan, and Henderson (2016) has shown that most women held their babies after stillbirth and the women who held their baby had a higher odds of reporting anxiety at 9 months and relationship difficulties within the family. Such findings suggest we still have a long way to go in having an effective, flexible approach in providing psychological care for parents after stillbirth.

There is high variability on what parents need at this time and when, depending on their culture and experiences, and so we need more information from parents and health professionals about their experiences of stillbirth, particularly in LMIC. We also need well-designed studies to identify the most effective ways of providing support at this very difficult time. Looking forward to 2017 and beyond, the current reviews, surveys and Lancet Series on Ending Preventable Stillbirths provide a very valuable starting point for relevant and robust psychological research which aims to support families who have experienced stillbirth.

Professor Fiona Alderdice
Chair in Perinatal Health and Well-being, School of Nursing and Midwifery, Queens University Belfast

Notes

1. Definition of stillbirth: all pregnancy losses after 22 weeks gestation.