NIHR - Global Health Research GROUP on Stillbirth Prevention and Management in Sub-Saharan Africa, Liverpool School of Tropical Medicine Background: Globally, 2.6 million babies die just before or during birth each year; 98% of stillbirths occur in low and middle income countries. Stillbirth is a tragedy for women and families, who suffer long lasting grief for their baby and are at high risk of anxiety, depression and post-traumatic stress disorder; most have little support and care. In low income countries, including Sub-Saharan Africa, over half of stillbirths happen during labour. Many women also have associated health problems, e.g. obstetric fistula. Stillbirth also affects health services, through increased costs for care and treatment along with health staff stress and burnout when supporting bereaved families. Many stillbirths are preventable with good quality maternity care. Unfortunately progress in preventing stillbirth has been far too slow to reach international targets and many women still do not receive basic humane care after their baby dies. A major problem is the lack of understanding of causes, how to change practice and provide better care in the countries most affected. The group aims are to: 1) Undertake high quality research into stillbirth within low income settings 2) Develop research capacity amongst health professionals in LMIC's 3) Build capacity amongst UK group members in global health research 4) Ensure that the work of the group demonstrates change, or potential to change, in policy and/or practice for women and/or families at a local, national and international levels 5) Engage key stakeholders in research activities, as appropriate During this 3 year programme, the research group are bringing together leading researchers, with expertise in stillbirth prevention and bereavement care to work with colleagues who have long standing experience of working in maternity care in low and middle income countries. The University of Manchester team have partnered with the Lugina Africa Midwives Research Network (www.LAMRN.org), a network of midwives from 6 countries (Kenya, Malawi, Tanzania, Uganda, Zambia and Zimbabwe) to deliver high quality research. The group are tackling 3 main areas of care: 1.Prevention of stillbirth through improved identification of women with high risk pregnancies. 2.Better childbirth care by examining factors which influence how women seek and access care, the quality of the care received and specific causes of stillbirth in local healthcare facilities, using new effective tools. 3.Ensuring humane and respectful care for bereaved parents through understanding the experiences of women, partners and health workers after stillbirth. Outcome: The Research group will a) gain understanding of the issues in improving stillbirth prevention, childbirth and bereavement care in low income settings b) develop culturally relevant studies for further investigation, and c) establish itself as a catalyst for change. Abstract:
a)The UoM prioritises cross and inter-disciplinary research addressing key global challenges with a strategy focused on making pioneering discoveries and improving the lives of people globally. This project speaks to our Addressing Global Inequalities research beacon which combines the best academic minds to meet these challenges head on. b)UoM hosts the Maternal and Fetal Health Research Centre which is focused on prevention of stillbirth and improving care for bereaved parents in the UK. The centre, embedded in St Mary's Hospital, includes 80 obstetricians, midwives and researchers. This project will allow the group to expand to address stillbirth as a global health issue. It will be embedded within the UoM Centre for Global Women's Health, a WHO collaborating centre with existing expertise and established networks. c)Existing and future investments revolve around the key aims of training outstanding researchers and giving parity of esteem to discovery, application, knowledge transfer and impact. Our commitment to addressing key global challenges, is recognised by the WHO, with Collaborating Centre status awarded to 3 UoM research groups. d)Stillbirth was described in the Lancet (1) as one of the most neglected tragedies in global health; 75% occur in Africa and South Asia. Human costs are long-lasting, extending beyond the mother to her family, and society; an estimated 4.2 million women have associated depression (2). Despite this, stillbirth was absent from the MDGs and overlooked in international policy. UNICEFs Every Newborn Action Plan (ENAP) challenges countries to reduce stillbirth rates to <12 per 1,000 births by 2030. The current rate of reduction is only 1.9%; more than a twofold increase to 4.2% is needed to achieve the ENAP target (3). A major barrier to achieving this goal is that evidence is largely synthesised in HICs and rarely applied to LMIC settings. There are differences in the causes of stillbirth in LMICs, e.g. 50% of stillbirths occur during labour in comparison to <10% in HICs. Critically, stillbirth reduction can lead to less adverse neonatal and maternal health outcomes. The Lancet Series(1) highlighted the need to expand stillbirth research in LMICs. This requires implementation of effective interventions to prevent and respond to stillbirths. We will address prevention and detection in pregnancies at high risk of stillbirth, intrapartum management and respectful care in 3 work streams(WS). These will run in parallel to a capacity development programme and monitoring and evaluation(M&E) strategy. These work streams will be delivered via LAMRN (founded by Lavender) which has established relationships with care providers in Kenya, Tanzania, Uganda, Malawi, Zambia and Zimbabwe. LAMRN has trained 150 midwives in research/audit. Prior relationships with key in-country stakeholders and the International Stillbirth Alliance (ISA) will foster programme support and enable practice and policy implementation. WS 1 Prevention and detection (Heazell, Smyth) Background: As 50% of antepartum stillbirths are preceded by reduced fetal movements (RFM), education of women about fetal movements and identification of fetal compromise may reduce antepartum stillbirths. Monitoring of fetal wellbeing, in this way is attractive as it requires little initial resource. Yet, few studies in LMICs have evaluated RFM as a tool to prevent stillbirths. Aim: To establish current practice regarding fetal movements and fetal wellbeing and the accuracy and availability of methods to assess fetal wellbeing after perception of RFM in LMICs. To develop an intervention to identify fetal compromise based on RFM. Method: Explore, qualitatively, womens' and professionals' views of RFM as a screening tool for fetal compromise and identify barriers to accessing care. Perform a cohort study to evaluate which facets of clinical history, examination and investigation most accurately predict adverse outcome after RFM and evaluate these methods to inform development of an intervention. Outcome: Understanding of utility of maternal perception of RFM to identify increased risk of stillbirth and determine tools to identify subsequent fetal compromise. Inform a definitive study and clinical practice changes. Deliverables: Short term(0-6 months): Agreed study protocol, approvals in place. Medium term(6-24 months): Qualitative study submitted for publication, cohort study recruitment complete. Long term(24-36 months): Intervention developed using RFM. Completed feasibility study to test the utility of fetal movement as a screening tool in LMIC setting. WS 2: Childbirth Care (Lavender, Smyth) Background: As half of all stillbirths in LMICs occur in labour, improved management could reduce stillbirths. Drawing on the 3 delays model (4) we will explore 1) triggers to seek help, 2) barriers to accessing care and 3)reasons why women fail to receive appropriate care. 2A Aim: To explore barriers to timely and effective care in healthcare facilities and implement appropriate interventions to overcome these. Method: We will use qualitative interviews and focus groups; recruiting women, partners and community health workers to explore access to care. An educational module for essential childbirth care, developed with the WHO, will be piloted alongside a series of board games aimed at improving clinical decision-making. Focused labour ward observations will capture aspects of decision-making that could be improved. Outcomes: Greater understanding of the contextual issues around decision-making and information to design an intervention (or country-specific interventions) to be tested in a feasibility study. Deliverables: Short term(0-6 months): Agreed research protocol, identification of sites. Medium term(6-24 months): Qualitative findings submitted for publication. Development of a tailored intervention. Long term(24-36 months): Feasibility study protocol to compare intervention against usual care. 2B (Bedwell) Aim: To conduct institutional perinatal audits to understand the reasons for stillbirth, to develop care accordingly. Methods: An audit will be conducted, using the new WHO ICD-PM classification for perinatal death (5) and tools developed to understand the reasons for stillbirths in LMIC maternity units. The baseline audit will result in implementation of an action plan, and subsequent re-audit. Outcomes: Further understanding of the reasons why stillbirths occur to inform appropriate plans of care and future areas for investigation. We will test the acceptability of implementing the WHO ICD-PM tool, sharing lessons learnt. Deliverables: Short term(0-6 months): Agreed audit protocol. Local approvals in place. Medium term(6-24 months): Baseline audit data, action plan, re-audit data. Long term(24-36 months): Roll-out of audits and established strategy for independently conducted robust audits. Disseminate findings through multiple mediums. WS 3: Respectful care (Mills, Lavender) Background: Stillbirth has profound and lasting psychological effects. Disenfranchised grief is common and associated with poor outcomes. Respectful care supports recovery, but is not universal. In LMICs, psychological distress may be compounded by physical morbidity; eg. obstetric fistula occurs in 50-100,000 women yearly and 70% are accompanied by stillbirth (6). Research exploring the response of health systems to bereaved parents in LMIC, is lacking. Aim: To build on ongoing qualitative work in Kenya (Wellbeing of Women International development Fellowship, Mills), exploring parent and health worker experiences of stillbirth, to develop an intervention with possible roll-out to other LAMRN countries. Method: Qualitative interviews will explore parents' and professionals' views and experiences in urban and rural settings, including women with obstetric fistula. Thematic analysis will capture experiences of care and support, identifying areas for service improvement. Links will be developed with local service users, clinicians and each health ministry to support interpretation and dissemination. Outcomes: Data will inform an intervention (or country-specific interventions) to be tested in a feasibility study. Deliverables: Short term(0-6 months): Agreed protocol, local approvals in place. Medium term(6-24 months): Understanding of parents and health professionals needs (country/region-specific). Published in high impact journal. Identification of key intervention components to improve bereavement care. Protocol and results of feasibility trial. Long term(24-36 months): Develop main trial protocol, should pre-defined parameters be met. Capacity Building Capacity building is integral to our strategic plan, developing skills of UK partners in conducting research in LMIC settings and developing research, dissemination and implementation skills of African partners. Monitoring and Evaluation In conjunction with LAMRN, an M&E strategy, focusing on activities, outputs and impact related to the short, medium and long term goals of the work streams and the overall project will be developed. This will encompass performance indicators, sources, types of data and responsibilities for data collection. Six monthly interim reports will document progress and alert the network to areas requiring adjustment, with a final evaluation report at 36 months. By month 6 we will have: 1.Contracted the 6 country partners 2.Held a strategic start-up meeting 3.Facilitated in-country PPI groups 4.Recruited staff in UK and Africa 5.Agreed TORs 6.Developed a M&E strategy 7.Established a group brand identity and developed a communication plan 8.Completed work stream deliverables International partnerships New and existing partnerships and the expertise of the cross-disciplinary team will ensure timely delivery. A communication plan will ensure active engagement with all relevant partners.