Evaluating care pathways for women with pre-eclampsia in low resource settings: a health systems approach

Student thesis: Doctoral ThesisDoctor of Philosophy

Abstract

Background
Pre-eclampsia is a leading cause of maternal, fetal and neonatal mortality and morbidity in low resource settings. It complicates 2 - 5% of pregnancies, leading to an estimated 27,830 maternal and 500,000 perinatal deaths globally per year. Women and babies in low- and middle- income countries are disproportionately affected by poor outcomes associated with pre-eclampsia. The vast majority of deaths due to pre-eclampsia could be prevented with timely access to high-quality care.

Pre-eclampsia is a complex, pregnancy-specific disorder that can present in many ways in either the antenatal, intrapartum or postnatal period. Women may be asymptomatic or present with headache, visual disturbance, abdominal pain and significant swelling. Severe complications include eclamptic seizures, stroke and placental abruption. The clinical definition of pre-eclampsia has evolved from new onset hypertension after 20 weeks’ gestation and proteinuria, to a broader classification that includes multi-organ involvement and uteroplacental complications. Pre-eclampsia is progressive, and the risk of maternal and perinatal complications increase with time. Risks can be reduced with early detection and appropriate care escalation. Appropriate management is dependent on the clinical presentation and involves treatment of hypertension, treatment or prevention of eclampsia and timing delivery.

Despite significant reductions in maternal mortality globally over recent decades, many women and babies still face perilous risks during pregnancy and after birth. This PhD aimed to evaluate care pathways for women with pre-eclampsia in low resource settings, using Ethiopia, Haiti and Zimbabwe as case studies. These diverse settings, all with similarly high maternal mortality rates, were selected to allow a comparison of findings across distinct sociocultural contexts. The objectives of this thesis were: 1) To explore local knowledge, understanding and lived experience of pre-eclampsia across three diverse low-income settings. 2) To identify health systems bottlenecks to delivery and uptake of quality maternal care for pre-eclampsia in rural Ethiopia. 3) To understand processes and experiences of hospital level care for pre-eclampsia in Ethiopia. 4) To develop a Theory of Change to support the co-production of culturally relevant educational resources aiming to improve shared understanding of pre-eclampsia in Haiti and Zimbabwe.

Methods
The study comprised four components: 1) A comparative qualitative study in Ethiopia, Haiti and Zimbabwe to explore lived experience, community conceptualisations of pre-eclampsia and pluralistic care. 89 in-depth interviews and 17 focus group discussions (n=106) were conducted with antenatal and postnatal women including survivors of pre-eclampsia, families of deceased women, partners, older male and female decision-makers, traditional birth attendants, religious and traditional healers, community health workers and facility-based health professionals. Template analysis was used to facilitate cross-country comparison drawing on the Health Belief Model and Social Learning Theory. 2) A mixed-methods study evaluating health systems bottlenecks to pre-eclampsia care in Ethiopia. Multiple data sources including an antenatal care survey (n=2079), in-depth interviews (n=49), ethnography, a situation analysis, a document review and meetings with key stakeholders were integrated using a Theory of Change. The findings were synthesised around a conceptual framework for high-quality health systems. 3) A qualitative study examining challenges as they impacted on hospital level care for pre-eclampsia in Ethiopia. A rapid ethnographic approach was used including direct participant observation, interviews (n=21) and guidelines to contextualise the accounts and observations of care. 4) Theory of Change used as a participatory framework to plan and design educational interventions with stakeholder engagement.

Findings
Three main themes emerged in the multi-country community qualitative study: i) challenges in coherence: a lack of shared language and interpretations, ii) complex priorities: balancing expectations and preferences, iii) opportunities for inclusivity, improving quality and support.

Across settings, raised blood pressure in pregnancy was often attributed to psychosocial distress and dietary factors, and eclampsia linked to spiritual manifestations. Pluralistic help- seeking was driven by attribution of causes, social norms and expectations relating to alternative care and trust in biomedicine across all three settings. Divergence across the contexts centred around nuances in religious or traditional practices relating to maternal health and pregnancy. The mixed methods study identified numerous systemic barriers to the provision and uptake of quality, person-centred care for pre-eclampsia in Ethiopia across the care pathway. Prediction, prevention and early detection of pre-eclampsia were challenged by weak foundations of the health system. Care escalation was hindered by fragmented referral pathways, lack of ambulances and poor documentation. Appropriate management was impacted by a lack of availability or adherence to guidelines, a lack of training or non-availability of medications. Equity was a cross-cutting issue. The ethnographic study at hospital level identified three main themes: i) inconsistencies and inequities (in care and how policies were implemented) ii) improvising and making do (how staff managed with limited resources and knowledge), iii) trust and support (social hierarchies and punitive cultures challenged quality care and learning environments). ToC was effectively used to support collaboration between women, wider community members and healthcare professionals. Sensitive facilitation of workshops created safe spaces for participants to voice their ideas, renegotiate power dynamics, broaden perspectives and ensure vulnerable voices were heard. Two short films were co-created and screened in communities in Haiti and Zimbabwe aiming to developing shared understanding of pre-eclampsia.

Conclusion
These findings have contributed to the understanding of barriers to quality care and opportunities to address them across the care pathway for pre-eclampsia. Women, families and healthcare professionals want to understand more about pre-eclampsia across diverse low resource settings. Shared understanding of pre-eclampsia should be developed through engagement with communities, ensuring culturally relevant approaches are used to empower women. Quality and equitable care for women with pre-eclampsia requires organisational and system level change to create safe spaces for learning and improvement, alongside efforts to offer patient-centred care and ensure providers are equipped with knowledge, resources and support to adhere to evidence-based practice.
Date of Award1 Aug 2023
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorAndrew Shennan (Supervisor), Charlotte Hanlon (Supervisor) & Jane Sandall (Supervisor)

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