This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Women in sub-Saharan Africa may hide and suppress their grief after having a stillborn baby. A study found that this response, which is in line with cultural norms, was a barrier to the grieving process. It suggested that healthcare workers could help women to express their emotions.
Researchers explored the impact of healthcare workers’ communication about stillbirth on parents. They interviewed women in Malawi, Tanzania and Zambia. The women said that they could not openly express their grief because of cultural expectations.
The researchers found that communication with healthcare professionals influenced women’s experiences of care. The women felt lonely and frustrated when communication was harsh or unclear; they were grateful when professionals took the time to give sensitive explanations. Cultural attitudes and beliefs (such as that grieving for a stillborn baby will affect future pregnancies) meant that many healthcare professionals did not encourage parents to openly mourn. This could leave them feeling isolated.
The team conclude that healthcare professionals should be given training on how to communicate about stillbirth. They call for every country to produce culturally-appropriate guidance.
What's the issue?
The World Health Organization defines a stillborn as a baby who dies before or during birth after 28 weeks of pregnancy (in the UK, stillbirth is defined as a death after 24 weeks). A miscarriage is when the baby dies earlier than this.
The global number of stillbirths has reduced over the last 10 years. Advances in understanding about care during pregnancy and in labour have helped. Even so, 2 million stillbirths occurred in 2019; most were in sub-Saharan Africa and South Asia.
The way healthcare workers convey information to women and their families at the time of stillbirth can shape their experience of care. Communicating with empathy can help people feel supported, while being disrespectful or unclear can cause stress and uncertainty.
Communication about stillbirth is influenced by cultural attitudes towards stillbirth. In some countries, stillborn babies are associated with curses and spirits, and are kept private to avoid humiliation. In some areas of sub-Saharan Africa, stillborn babies may not be recognised as human, which can mean parents are not given the chance to mourn. It can also mean that parenthood is not recognised. This can add to parents’ suffering and isolation.
The researchers explored how and when women became aware of the death of their babies, and how their interaction with healthcare workers shaped their feelings and experiences of grief.
The study included 33 women who had a stillborn baby (defined as a baby born without signs of life at or after 28 weeks) within the previous 12 months, and who had been cared for in hospital. The women were aged between 18 and 44 years; 9 were from Zambia, 16 from Tanzania and 8 from Malawi.
Interviews with the women revealed their need to conform to cultural expectations. They all felt their experience was a forbidden topic of conversation and they were unable to express their grief. Most said the study was their first chance to share their experience and they were grateful for the opportunity to reflect on what had happened.
The researchers considered how healthcare workers influenced women’s experiences at different stages of their hospital care.
When something felt wrong
Some women began preparing for the worst when they did not feel the baby move. Others’ doubts were triggered when healthcare workers asked a colleague to help find a heartbeat, or avoided explaining ultrasound findings. Lack of clear communication about the results of scans led people to draw their own conclusions. A woman from Malawi said:
“…after scanning me, she [the nurse/midwife] did not tell me anything but she told me that ‘just wait, let me find a colleague so that she should also scan you in order to see’. I had doubts.”
Women were devastated when they were told the baby was stillborn; those in Tanzania and Malawi often cried. But traditionally, people in Zambia believe that crying for a stillborn baby leads its spirit to prevent a mother from conceiving another child. One woman said:
“She was a beautiful baby… I felt like crying but I remembered what my mother told me about our tradition. I could not cry because I wanted another baby.”
Communication styles and attitudes
The communication style and attitudes of healthcare workers influenced women’s experiences of care. When learning of the death of their baby, women valued:
- healthcare workers who gave them their full attention (maintained eye contact and did not rush), used a low tone of voice, did not blame them, and called them by name
- sensitive language and simple, polite, apologetic phrases (such as ‘I am sorry for your loss’)
- concern, empathy, and support
- a private location away from others (especially from mothers with live infants), and having someone with them when the news was given.
By contrast, casual or harsh communication about the stillbirth, especially when the woman was alone, increased distress. Several women overheard by accident that their baby had died, rather than being told directly. This left them feeling abandoned. Several felt discriminated against. A woman from Zambia said:
“… Those nurses felt I didn’t need the care that women with live babies did, yet I needed more care because I was psychologically traumatised. I was so depressed giving birth to a dead child.”
Meeting the baby
Hospital protocols in Tanzania, Malawi and Zambia state that mothers are shown their baby, whether alive or stillborn to confirm the sex. Some women said this happened without them being prepared for it, and even when it went against their wishes. Other women wanted to spend more time with their baby, to properly see and hold their baby, even though it went against cultural norms:
‘’Although our culture does not allow us to see a stillborn baby, I preferred to see… I deserve the right to see how my baby looked like […] some of us have seen our stillborn baby. I am yet to see what will happen to me.''
In Tanzania, most women willingly held their babies. Women in Malawi would have liked to, but were not given the chance. In Zambia, traditional beliefs prevented parents from touching or keeping anything related to the stillborn baby, for fear of their spirit affecting future pregnancies. Some women wanted to avoid creating negative memories. Many had not considered taking photographs; the few women who kept photographs or items (such as hospital cards) hid them from their families.
Why is this important?
Women in Malawi, Tanzania and Zambia are expected to suppress their emotions, and not to talk about the death of the baby with family members or other childbearing women. They might not be allowed to attend the baby’s burial. They are discouraged from seeing, touching and holding the baby, and from creating memories through photographs. They are encouraged to forget their pregnancy and its outcome.
The hospital setting might be parents’ only chance to mourn their baby. The researchers urge healthcare workers to create opportunities for them to express their grief. This could promote psychological wellbeing, the study says, and prevent them feeling isolated in their communities.
The women in the study appreciated sensitive language, and clear and simple messages. Women needed time to absorb information. Having a companion with them when they received bad news reduced their distress and loneliness. Simple measures like this improved care around stillbirth.
Healthcare workers would benefit from training in how to communicate with women who have had a stillbirth and to encourage mothers (and fathers) to express their grief. Training could raise their awareness of the benefits of compassionate support. Hospital policies should signpost grieving women to bereavement counselling or psychological services (if available). Women may need long-term follow-up.
Many hospitals may lack individual consultation rooms where women can be told of their stillbirth. They are often placed close to families with living babies. An appropriate setting, which provides privacy and time for questions, can help parents process their loss and be involved in decisions concerning birth, burial and support. Where rooms are not available, curtains could give some privacy.
There are no global guidelines about communication around stillbirth. This study shows the importance of countries having their own culturally-appropriate guidelines. This is especially important in countries whose cultures restrict parents’ ability to grieve openly once they leave hospital.
You may be interested to read
This Alert is based on: Actis Danna V, and others. Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory study. Women and Birth 2022 (epub ahead of print) doi: 10.1016/j.wombi.2022.04.006.
A study of cultural beliefs and practices in Uganda and Kenya: Ayebare E, and others. The impact of cultural beliefs and practices on parents’ experiences of bereavement following stillbirth: a qualitative study in Uganda and Kenya. BMC Pregnancy and Childbirth 2021;443 doi: 10.1186/s12884-021-03912-4.
A study describing healthcare workers’ experiences of caring for parents after stillbirth: Mills TA, and others. ‘There is trauma all round’: A qualitative study of health workers’ experiences of caring for parents after stillbirth in Kenya and Uganda. Women and Birth 2022 (epub ahead of print) doi: 10.1016/j.wombi.2022.02.012.
NIHR Evidence Alert: How can we better support parents when their newborn baby is dying?
Funding: This research was funded by the NIHR Global Health Fund (16/137/53).
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.