A health-systems journey towards more people-centred care: lessons from neglected tropical disease programme integration in Liberia.

BACKGROUND: Neglected tropical diseases (NTDs) are associated with high levels of morbidity and disability as a result of stigma and social exclusion. To date, the management of NTDs has been largely biomedical. Consequently, ongoing policy and programme reform within the NTD community is demanding the development of more holistic disease management, disability and inclusion (DMDI) approaches. Simultaneously, integrated, people-centred health systems are increasingly viewed as essential to ensure the efficient, effective and sustainable attainment of Universal Health Coverage. Currently, there has been minimal consideration of the extent to which the development of holistic DMDI strategies are aligned to and can support the development of people-centred health systems. The Liberian NTD programme is at the forefront of trying to establish a more integrated, person-centred approach to the management of NTDs and provides a unique learning site for health systems decision makers to consider how shifts in vertical programme delivery can support overarching systems strengthening efforts that are designed to promote the attainment of health equity. METHODS: We use a qualitative case study approach to explore how policy and programme reform of the NTD programme in Liberia supports systems change to enable the development of integrated people-centred services. RESULTS: A cumulation of factors, catalysed by the shock to the health system presented by the Ebola epidemic, created a window of opportunity for policy change. However, programmatic change aimed at achieving person-centred practice was more challenging. Deep reliance on donor funding for health service delivery in Liberia limits the availability of flexible funding, and the ongoing funding prioritization towards specific disease conditions limits flexibility in health systems design that can shape more person-centred care. CONCLUSION: Sheikh et al.'s four key aspects of people centred health systems, that is, (1) putting peoples voices and needs first; (2) people centredness in service delivery; (3) relationships matter: health systems as social institutions; and (4) values drive people centred health systems, enable the illumination of varying push and pull factors that can facilitate or hinder the alignment of DMDI interventions with the development of people-centred health systems to support disease programme integration and the attainment of health equity.

Incorporating the diagnosis and management of female genital schistosomiasis in primary healthcare in Liberia: a mixed methods pilot study.

BACKGROUND: Liberia's national neglected tropical disease (NTD) master plan 2016-2020 adopted the need for integrated approaches to tackle the threat of specific NTDs including schistosomiasis. Female genital schistosomiasis (FGS) affects up to 75% of women and girls living in schistosomiasis-endemic areas. Liberia's Bong and Nimba counties are endemic for schistosomiasis. The communities affected are poor and dependent on primary healthcare services. Incorporating the diagnosis and treatment of FGS within primary healthcare is a critical step in the control and elimination of schistosomiasis in Liberia. The Calling Time for Neglected Tropical Diseases (COUNTDOWN) research programme partnership included the Liberia Ministry of Health NTD programme. Together, partners designed this study to co-develop, pilot and evaluate a primary healthcare package for clinical diagnosis and management of FGS in Liberia. METHODS: Mixed methods were applied to assess the intervention outcomes and process. Quantitative descriptive analysis of routine health facility (secondary) data was used to characterise women and girls diagnosed and treated for FGS. Qualitative rapid analysis of meeting reports and training observations, thematic framework analysis of in-depth interviews with women and girls and key-informant interviews with health system actors were used to establish the success and sustainability of intervention components. RESULTS: In 6 months, 258 women and girls were diagnosed and treated for FGS within routine service delivery across six primary health facilities. Diagnosis and treatment were completed by health facility staff who had been trained in the FGS intervention developed within this study. Some women diagnosed and treated had symptom relief or were optimistic about the intervention due to improved diagnostic and treatment communication by health workers. Health workers and stakeholders were satisfied with the care package and attributed intervention success to the all-inclusive approach to intervention design and development; cascaded training of all cadres of the health system; and the locally driven intervention rollout, which promoted local ownership and uptake of intervention components. CONCLUSION: This study demonstrates the possibility of using a clinical care package to diagnose women and girls suspected of FGS, including the provision of treatment using praziquantel when it is made available at primary healthcare facilities.

A quality improvement approach in co-developing a primary healthcare package for raising awareness and managing female genital schistosomiasis in Nigeria and Liberia.

BACKGROUND: Girls and women living in endemic areas for urogenital schistosomiasis may have lifelong vulnerability to female genital schistosomiasis (FGS). For >2 decades, the importance of FGS has been increasing in sub-Saharan Africa, but without established policies for case detection and treatment. This research aimed to understand the level of FGS knowledge of frontline health workers and health professionals working in endemic areas and to identify health system needs for the effective management of FGS cases and prevention of further complications due to ongoing infections. METHODS: Workshops were conducted with health workers and stakeholders using participatory methods. These workshops were part of a quality improvement approach to develop the intervention. RESULTS: Health workers' and system stakeholders' knowledge regarding FGS was low. Participants identified key steps to be taken to improve the diagnosis and treatment of FGS in schistosomiasis-endemic settings, which focused mainly on awareness creation, supply of praziquantel, development of FGS syndromic management and mass administration of praziquantel to all eligible ages. The FGS intervention component varies across countries and depends on the health system structure, existing facilities, services provided and the cadre of personnel available. CONCLUSION: Our study found that co-developing a new service for FGS that responds to contextual variations is feasible, promotes ownership and embeds learning across health sectors, including healthcare providers, NTD policymakers and implementers, health professionals and community health workers.

Resuming NTD activities in the context of COVID-19: an investigation into the advantages of risk assessment processes to mitigate the transmission of COVID-19 during NTD delivery.

BACKGROUND: The neglected tropical disease (NTD) sector is adapting to the uncertain circumstances of coronavirus disease 2019 (COVID-19). The development of the Risk Assessment and Mitigation Action (RAMA) tool was driven by partners of the programme Accelerating the Sustainable Control and Elimination of NTDs (hereafter called Ascend) to enable countries to recommence NTD activities following the World Health Organization advisories of April and July 2020. This article explores the advantages of the RAMA process for NTD delivery. METHODS: The analysis used interview transcripts with NTD practitioners in Cote d'Ivoire, Guinea, Liberia and Nigeria and results from the monitoring of compliance with COVID-19 mitigation measures in Nigeria. RESULTS: Three themes emerged from the results: adaptability and innovation, collaboration and government ownership and preparedness. CONCLUSIONS: The advantages of the RAMA tool suggest its importance in mitigating the transmission of COVID-19 during NTD delivery. There is the potential for the tool to be adapted for use throughout future pandemics.

A syndemic born of war: Combining intersectionality and structural violence to explore the biosocial interactions of neglected tropical diseases, disability and mental distress in Liberia.

The intersections between NTDs, disability, and mental ill-health are increasingly recognised globally. Chronic morbidity resultant from many NTDs, particularly those affecting the skin-including lymphatic filariasis (LF), leprosy, Buruli ulcer (BU) and onchocerciasis-is well known and largely documented from a medicalised perspective. However less is known about the complex biosocial interaction shaping interconnected morbidities. We apply syndemic theory to explain the biosocial relationship between NTDs and mental distress in the context of structural violence in Liberia. By advancing syndemic theory to include intersectional thought, it is apparent that structural violence becomes embodied in different ways through interacting multi-level (macro, meso and micro) processes. Through the use of in-depth qualitative methods, we explore the syndemic interaction of NTDs and mental distress from the vantage point of the most vulnerable and suggest that: 1) the post-conflict environment in Liberia predisposes people to the chronic effects of NTDs as well as other 'generalised stressors' as a consequence of ongoing structural violence; 2) people affected by NTDs are additionally exposed to stigma and discrimination that cause additional stressors and synergistically produce negative health outcomes in relation to NTDs and mental distress; and 3) the impact and experience of consequential syndemic suffering is shaped by intersecting axes of inequity such as gender and generation which are themselves created by unequal power distribution across multiple systems levels. Bringing together health systems discourse, which is focused on service integration and centred around disease control, with syndemic discourse that considers the biosocial context of disease interaction offers new approaches. We suggest that taking a syndemic-informed approach to care in the development of people-centred health systems is key to alleviating the burden of syndemic suffering associated with NTDs and mental distress currently experienced by vulnerable populations in resource-limited settings.

Guiding principles for quality, ethical standards and ongoing learning in implementation research: multicountry learnings from participatory action research to strengthen health systems.

Global health gains can be achieved through strengthening health systems to identify and address implementation challenges in low- and middle-income countries. Participatory research, that promotes joint problem and solution finding between communities and different health systems actors, supports policy implementation analysis at all levels. Within the neglected tropical disease programmes in Liberia and Nigeria, we applied participatory action research (PAR) to address programmatic and health system bottlenecks with health systems strengthening embedded. This paper shares learning from 20 interviews with co-researchers, from national and sub-national levels and academic researchers who worked collaboratively to understand challenges, co-create solutions and advocate for policy change. Through analysis and reflections of existing PAR principles, we inductively identified five additional guiding principles for quality, ethical standards and ongoing learning within PAR projects that aim to strengthen health systems. (1) Recognize communities as units of identity and define stakeholder participation to ensure equitable engagement of all actors; (2) enable flexible action planning that builds on existing structures whilst providing opportunities for embedding change; (3) address health systems and research power differentials that can impede co-production of knowledge and solution development; (4) embed relational practices that lead to new political forms of participation and inquiry within health systems and (5) develop structures for ongoing learning at multiple levels of the health system. PAR can strengthen health systems by connecting and co-creating potentially sustainable solutions to implementation challenges. Additional research to explore how these five additional principles can support the attainment of quality and ethical standards within implementation research using a PAR framework for health systems strengthening is needed.

Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

BACKGROUND: Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. METHODS: We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FINDINGS: For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience. SIGNIFICANCE: This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.