The HAPPEE Partnership Project (Humanities and Arts in Preventing Pre-eclampsia complications through community Engagement and Education)

The HAPPEE Partnership Project engages an international cross-disciplinary team to create a novel mix of expertise aiming to engage and empower women and communities affected by pre-eclampsia. HAPPEE will strengthen UK and LIC based research, knowledge translation and advocacy. We are anthropologists, creative artists, writers, theatre-makers, filmmakers, social scientists, midwives, obstetricians and health advocates. The core endeavour will be partnership building, strengthening UK and LIC links and developing new relationships with complementary expertise. HAPPEE seeks to better understand socio-cultural and religious contexts through community engagement via the creative arts to improve education and health awareness of pre-eclampsia and its complications. We aim to understand local experiences, priorities and values of health care, pregnancy and birth and their relevance for improving adverse outcome for mothers and babies.

Pre-eclampsia is a disorder unique to pregnancy and the postpartum period, characterised by high blood pressure and the presence of protein in the mother's urine. Approximately 830 women die in pregnancy and childbirth everyday. Pre-eclampsia is a leading cause of maternal mortality worldwide and leads to 60,000 maternal deaths each year. Nearly all deaths due to pre-eclampsia are preventable. As such, the chance of dying from pre-eclampsia in the UK is now less than 1 in a million, however more than 100 women still die every day globally from this condition. Pre-eclampsia can be unpredictable and rapidly advancing. Severe complications include eclamptic seizures or stroke due to uncontrolled high blood pressure, kidney and liver dysfunction and blood clotting disorders as well as stillbirth, growth restricted babies with a risk of cerebral palsy. Effective management involves early recognition and initiation of treatments in partnership with women. Women's understanding is key to implementing this strategy.

The HAPPEE project is divided into three main phases. Development of the partnership will overarch all phases and will be facilitated via regular face-to-face and virtual meetings locally and internationally.
Phase 1 involves exploring context and undertaking qualitative work in Zimbabwe and Haiti. Baseline information will be collected regarding maternity care structures locally. Each country will undertake face-to-face semi-structured interviews and focus groups. Participants may include women previously affected by pre-eclampsia, pregnant women, new mothers, male and female decision makers, community leaders, traditional birth attendants, traditional healers and local healthcare professionals. Efforts will be made to ensure that all groups are represented, even those that are hard to reach. The aim is not only to scope levels of knowledge with respect to screening tests, symptoms, warning signs or perceived causes of pre-eclampsia and eclampsia but also to explore socio-cultural, historical and language barriers to accessing appropriate care. Phase 2 of the project involves the development of culturally sensitive and context specific educational materials to address these barriers. These will be developed with direct input from community members and coproduced. We envisage these may be in the form of short film, animations or interactive community theatre workshops. This collaboration with the creative arts will explore different medium as a way to engage communities, investigate their beliefs but also as vehicles to deliver health awareness messages. Phase 3 of the HAPPEE project will centre on implementing the resources created locally in Zimbabwe and Haiti. This phase will include end-user feedback from women, families and healthcare professionals with appropriate adjustments in the resources accordingly.

HAPPEE seeks to create a bridge between the research community and women and the wider community enabling the flow of ideas, opinions and learning.

The HAPPEE project partnership aims to develop an international interdisciplinary collaboration across maternity care, the visual and performing arts in Zimbabwe, Haiti and the UK. This unique funding stream will enable both the time commitment and resources to allow engagement across disciplines and countries, including the different models of maternity care in Zimbabwe and Haiti. The network will be built through regular partnership meetings and through developing a program of work on community engagement in the area of pre-eclampsia through film, the visual and performing arts. Our partners have extensive expertise in maternal health, global health and partnerships, theatre and film and innovative methodologies for public engagement in global health. Through this program of work we will be furthering the literature of community engagement through the visual and performing arts.

Pre-eclampsia effects approximately 10% of all pregnant women. It contributes an estimated 60,000 maternal deaths annually worldwide which are largely avoidable. Many women with severe disease and high blood pressure do not experience any symptoms even though they need medical attention. Health seeking behaviour in pregnancy is shaped by cultural, financial, social and political factors and is a particular challenge in a condition where women feel well. Through furthering our understanding of social and cultural dynamics in different settings, this group will coproduce context specific community engagement resources for women and their families to improve understanding of pre-eclampsia and eclampsia. A rigorous stakeholder engagement phase, will ensure that the views of women, new mothers, families, community leaders, male and female decision makers, traditional birth attendants, traditional healers and health care providers are represented. Communities will be encouraged to investigate their beliefs through innovative engagement methodologies. These views will be used to coproduce dramatic and visual educational tools to deliver health awareness messages.

The use of dramatic arts in health will open up new channels of communication and expression for both women and health care providers, regardless of status or culture. This will not only empower women to seek health care when required but also empower communities to demand high quality care, facilitating pressure for change and in turn improving the quality of care at the facility level.

Haiti and Zimbabwe have different cultural and social values and different health systems. Findings will therefore will be generalizable to many other LIC and different specialties in health. To ensure findings are disseminated we will attend international forums in global health as well as the visual arts. We will also seek to further our existing contacts with patient and public engagement group, Action Pre-eclampsia in the UK, by supporting the development of local action groups in LIC. We will utilise these relationships to help the public understand our scientific findings and their importance for the health of women, through forums dedicated to the dissemination of the project.

Our experience to date suggests this initiative is key to implementing life saving measures in pre-eclampsia and eclampsia care.