Midwives leading the way on stillbirth prevention and bereavement care research

Every year around 2 million babies are stillborn, around 98% of these in low and middle income countries (LMICs) and two thirds in Africa. The UN Sustainable Development Goals and Every Newborn Action Plan set ambitious targets to reduce stillbirths to fewer than 12 per 1000 births for all countries by 2030. 

In 2017, the NIHR Global Health Research Group on Stillbirth Prevention and Management in sub-Saharan Africa was established to research and reduce stillbirths, address the difficulties faced in preventing stillbirth and provide childbirth and bereavement care in low-income settings. 

Led by Dame Tina Lavender, Professor of Maternal and Newborn Health at Liverpool School of Tropical Medicine, the Group partners with the Lugina Africa Midwives’ Research Network (LAMRN) comprising more than 1,000 trained research midwives in Kenya, Malawi, Tanzania, Uganda, Zambia and Zimbabwe. 

Together the partnership developed culturally sensitive and cost-effective interventions that would continue to improve maternity care across sub-Saharan Africa. The research programme was designed to help understand and improve three main areas of care around stillbirths in LMIC settings, focusing on:

• prevention of stillbirth by identifying women with high-risk pregnancies
• improving childbirth care by investigating the factors influencing how women seek and access care, the quality of the care received and specific causes of stillbirth in local healthcare facilities
• ensuring appropriate and respectful care for bereaved parents through understanding the experiences of women, partners and health workers after stillbirth.

The research team had a shared vision to change the lives of women, babies and families. We have successfully delivered a programme of research with direct benefits for practice, while giving midwives the skills and confidence to make a real difference to women and their babies in the future.
- Dame Tina Lavender, Professor of Maternal and Newborn Health at LSTM

Working across the six countries within the maternity network established by LAMRN, the Group engaged midwives and families in 12 studies investigating the risk factors associated with stillbirth, the way the death of a baby is communicated to families, and bereavement care and support. For example, the Group investigated the associations between stillbirth and potential risk factors in Zimbabwe, such as women’s medical history and use of antenatal care, to identify women most at risk of stillbirth and who may benefit from targeted interventions. 

Their research showed that having a previous stillbirth increased the risk for subsequent pregnancies. The Group tested an intervention in Zimbabwe in which women with a previous stillbirth were offered specialist support and continuity of care at an antenatal clinic. Of the 28 women who attended the clinic, 27 successfully gave birth to a live baby, and all reported a positive experience. The intervention’s success led to the local health authority deciding to continue the clinic after the trial ended. 

Other research outcomes from the programme include private rooms for bereaved parents in facilities in Kenya and Tanzania, and a team of bereavement champions to support parents whose babies die in hospitals in Uganda and Kenya. Audits of stillbirth have been embedded in two facilities in Malawi to improve childbirth care. 

Midwives and nurses provide front-line care and management during pregnancy, childbirth and for postnatal services, so developing research expertise amongst these professions is essential to improve evidence-based care and outcomes for women, babies and their families. The Group therefore prioritised their training, supporting its research teams to identify both their individual and country-level training needs. 

The training opportunities identified ranged from formal education, for example, researchers from Kenya and Zambia taking Master’s courses at the University of Manchester, to online training focusing on research methods and dissemination skills. The UK programme management team worked with countries’ local finance and governance teams to develop working processes, and the Uganda team mentored colleagues from Tanzania on conducting audits in their facilities. 

Community involvement and engagement (CEI) is also vital, ensuring that the views of women and their families shape the research. Partners from LAMRN identified parents from a variety of backgrounds who had experienced stillbirth to create CEI groups. Insights from these groups informed the research and developed interventions that were acceptable to different communities. 

An example of the influence of CEI can be illustrated by the team in Uganda, where its CEI group reviewed and improved research interview guides so that interviews with women and their partners were conducted sensitively and in a way that was easy to understand. Bereaved men in Uganda created a separate group for fathers to share their experiences and needs after stillbirth, helping to reduce some of the stigma associated with discussing stillbirth.

Stillbirth is one of the most traumatic life experiences for parents but is rarely discussed and is highly stigmatised in Africa. Women and families affected by stillbirth need appropriate and respectful care, but stigma associated with the bereavement often results in isolation and limited support from the healthcare system and communities.

We are proud of the huge strides this work has made in raising the profile of stillbirth within six countries in Africa, encouraging engagement with a topic that would often be viewed as taboo, and building the capacity for ongoing research in each country.
- Dr Sabina Wakasiaka, LAMRN Regional Coordinator for East Africa

Dr Sabina Wakasiaka, LAMRN Regional Coordinator for East Africa, said: "Working with parents, health workers, communities and governments through the CEI groups allowed those most affected by stillbirth to have their voices heard, help us frame our research and questions in culturally sensitive ways and develop services that directly address their needs."

The healthcare workers taking part in the research used their new skills and knowledge to offer women better maternity care, including greater compassion and support for bereaved parents. For example, women in Tanzania with a previous history of stillbirth are now seen by an obstetrician in a shorter time than before, and supportive care is now offered to women who have a stillborn baby in Zambia. In addition, midwifery, nursing and medical schools are incorporating the Group’s findings and interventions into course curriculums.

The Group’s findings also informed national guidelines and strategies on maternal health and stillbirth in Uganda and Kenya and led to inquiries into high stillbirth rates in Tanzania. In Zambia, the Group’s approach to collecting data is being used to provide better estimates of stillbirth numbers in other parts of the country. 

In 2021 the partners were successful in their application for a new 5-year grant for the NIHR Global Health Research Unit on the Prevention and Management of Stillbirths and Neonatal Deaths in Sub-Saharan Africa and South Asia. As well as bringing together leading maternal and newborn health experts from existing partners, the Unit has brought in new partners from India and Pakistan. The new Unit’s activities encompass the Group’s original goals while expanding to cover the spectrum of maternal and newborn health, from conception to postnatal and neonatal care. Its focus remains on building strong partnerships with local communities to reduce stillbirths and also neonatal deaths and to support those who experience them. 

Working in these eight countries (Kenya, Malawi, Tanzania, Uganda, Zambia, Zimbabwe, India and Pakistan) with national priorities to reduce the number of perinatal deaths, the Unit will deliver a programme of nine workstreams investigating:

• an antenatal care package to improve perinatal outcomes in Tanzania
• a respectful maternal and newborn care bundle in Tanzania and Malawi
• a childbirth care package in Zambia and Zimbabwe
• a newborn resuscitation tool (the BabySaver) in Uganda
• parental involvement in the care of sick newborns in India, Pakistan and Tanzania
• an intervention to improve care and support for parents after stillbirth or newborn death in Kenya, Uganda, India and Pakistan
• a peer-support programme for women experiencing stillbirth and birth-related injury in Kenya
• childbirth needs of adolescents in Zambia
• key outcome sets for use within LMIC research settings.

Additionally, the Unit has an integral capacity development programme which incorporates formal and informal training and mentorship. The Unit is supporting nine PhD’s, Three Master’s students and five Post-Doctoral Fellows.

The collaboration between our new Unit’s partners is critical to the success of the research programme across sub-Saharan Africa and South Asia. Our research over the last 4 years has had a huge impact on the lives of many and we will build upon this foundation of work, continuing to investigate ways to reduce preventable stillbirths and newborn deaths while improving bereavement care for parents.
- Professor Angela Chimwaza, University of Malawi and Unit Co-Director

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The NIHR Global Health Research programme funds several Units, Groups and RIGHT projects focusing on aspects of neonatal and maternal health. These include: 

• NIHR Global Health Research group on preterm birth and stillbirth
• NIHR Global Health Group on Perioperative and Critical Care
• NIHR Global Health Research Group on Improving Quality of Maternal Healthcare in Africa
• NIHR Global Health Research Group on leveraging improved nutrition preconception, during pregnancy and postpartum in SubSaharan Africa 
• NIHR Global Health Research Unit on Health System Strengthening in Sub-Saharan Africa, King's College London 
• NIHR Global Health Research Group: Implementation of simple solutions to reduce maternal and neonatal mortality and build research capacity in Sierra Leone

The NIHR-funded Global Health Research Group on Preterm Birth (PRIME), a NIHR Research and Innovation for Global Health Transformation (RIGHT) funded project led by researchers from the University of Pretoria and the University of Sheffield along with partners in Bangladesh, South Africa and Nigeria, are investigating the challenges posed by preterm birth in LMICs through innovative, sustainable and interdisciplinary research.

Preterm birth affects 15 million babies annually, with over 1 million deaths occurring as a direct consequence. It is the leading cause of under-5 deaths in LMICs, and reducing infant deaths is a key goal of the United Nations. In LMICs, pregnant women often register late for prenatal care, and usually give birth either at home or in inadequately resourced facilities.