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

Barriers and Enablers to Health-Seeking for People Affected by Severe Stigmatising Skin Diseases (SSSDs): A Scoping Review

People affected by severe stigmatising skin diseases (SSSDs) often live in the poorest communities, within the poorest countries, and experience a range of barriers to seeking timely, quality care. This scoping review analyses the available literature on health-seeking for patients affected by SSSDs, to identify enablers and barriers to health-seeking. We searched MEDLINE complete, CINAHL, Global Health databases for suitable articles published between 2010 and 2020. Search strings were compiled for health-seeking, SSSDs and lower middle-income countries (LMIC). Our search returned 1004 studies from across three databases. Of these, 136 potentially relevant studies were identified and full texts were reviewed for eligibility against the inclusion criteria, leading to the inclusion of 55 studies. Thematic narrative analysis was used, with results framed around the Levesque framework to analyse barriers and enablers to health-seeking along the continuum of the patient pathway. This scoping review has revealed barriers across the patient pathway, from both supply and demand aspects of health services. Spiritual beliefs emerged strongly relating to care-seeking and underlying stigma. Curative care was a focus for the majority of studies, but few papers emphasised holistic care (such as physical rehabilitation and psychosocial support). From our analysis, greater community engagement is needed to reduce barriers along the patient-care pathway

"Buruli ulcer and leprosy, they are intertwined": Patient experiences of integrated case management of skin neglected tropical diseases in Liberia.

BACKGROUND: Skin neglected tropical diseases (NTDs) such as Buruli ulcer (BU) and leprosy produce significant stigma and disability. Shared clinical presentations and needs for care present opportunities for integrated case management in co-endemic areas. As global policies are translated into local integrated services, there remains a need to monitor what new configurations of care emerge and how individuals experience them. METHODS: To explore patient experiences of integrated case management for skin NTDs, in 2018, we conducted a field-based qualitative case series in a leprosy rehabilitation centre in Ganta, Liberia where BU services were recently introduced. Twenty patients with BU (n = 10) and leprosy (n = 10) participated in in-depth interviews that incorporated photography methods. We contextualised our findings with field observations and unstructured interviews with health workers. FINDINGS: The integration of care for BU and leprosy prompted new conceptualisations of these diseases and experiences of NTD stigma. Some patients felt anxiety about using services because they feared being infected with the other disease. Other patients viewed the two diseases as 'intertwined': related manifestations of the same condition. Configurations of inter-disease stigma due to fear of transmission were buffered by joint health education sessions which also appeared to facilitate social support between patients in the facility. For both diseases, medication and wound care were viewed as the cornerstones of care and appreciated as interventions that led to rehabilitation of the whole patient group through shared experiences of healing, avoidance of physical deformities and stigma reduction. Patient accounts of intense pain during wound care for BU and inability of staff to manage severe complications, however, exposed some shortcomings of medical care for the newly integrated service, as did patient fears of long-lasting disability due to lack of physiotherapy services. SIGNIFICANCE: Under integrated care policies, the possibility of new discourses about skin NTD identities emerging along with new configurations of stigma may have unanticipated consequences for patients' experiences of case management. The social experience of integrated medication and wound dressing has the potential to link patients within a single, supportive patient community. Control programmes with resource constraints should anticipate potential challenges of integrating care, including the need to ameliorate lasting disability and provide adequate clinical management of severe BU cases

Factors influencing mass drug administration adherence and community drug distributor opportunity costs in Liberia: A mixed-methods approach

Background Preventive chemotherapy delivered via mass drug administration (MDA) is essential for the control of neglected tropical diseases (NTDs), including lymphatic filariasis (LF), schistosomiasis and onchocerciasis. Successful MDA relies heavily on community drug distributor (CDD) volunteers as the interface between households and the health system. This study sought to document and analyse demand-side (households) and supply-side (health system) factors that affect MDA delivery in Liberia. Methods Working in two purposively selected counties, we conducted a household MDA access and adherence survey; a CDD survey to obtain information on direct and opportunity costs associated with MDA work; an observational survey of CDDs; and key informant surveys (KIS) with community-level health workers. Data from the CDD survey and Liberian minimum wage rates were used to calculate the opportunity cost of CDD participation per MDA round. The observational data were used to calculate the time spent on individual household-level tasks and CDD time costs per house visited. KIS data on the organisation and management of the MDA in the communities, and researcher reflections of open-ended survey responses were thematically analysed to identify key demand- and supply-side challenges. Results More respondents were aware of MDA than NTD in both counties. In Bong, 39% (103/261) of respondents reported taking the MDA tablet in the last round, with “not being informed” as the most important reason for non-adherence. In Maryland, 56% (147/263) reported taking MDA with “being absent” at the time of distribution being important for non-adherence. The mean cost per CDD of participating in the MDA round was −$11.90 (median$5.04, range −$169.62 to$30.00), and the mean time per household visited was 17.14 min which equates to a mean opportunity cost of $0.03 to$0.05 per household visited. Thematic analysis identified challenges, including shortages of and delays in medicine availability; CDD frustration over costs; reporting challenges; and household concerns about drug side effects. Conclusions Improved adherence to MDA and subsequent elimination of NTDs in Liberia would be supported by an improved medicine supply chain, financial compensation for CDDs, improved training, healthcare workforce strengthening, greater community involvement, capacity building, and community awareness

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

Community Attitudes Toward Mass Drug Administration for Control and Elimination of Neglected Tropical Diseases After the 2014 Outbreak of Ebola Virus Disease in Lofa County, Liberia.

The recent outbreak of Ebola virus disease (EVD) interrupted mass drug administration (MDA) programs to control and eliminate neglected tropical diseases in Liberia. MDA programs treat entire communities with medication regardless of infection status to interrupt transmission and eliminate lymphatic filariasis and onchocerciasis. Following reports of hostilities toward health workers and fear that they might be spreading EVD, it was important to determine whether attitudes toward MDA might have changed after the outbreak. We surveyed 140 community leaders from 32 villages in Lofa County, Liberia, that had previously participated in MDA and are located in an area that was an early epicenter of the EVD outbreak. Survey respondents reported a high degree of community trust in the MDA program, and 97% thought their communities were ready to resume MDA. However, respondents predicted that fewer people would comply with MDA after the EVD epidemic than before. The survey also uncovered fears in the community that EVD and MDA might be linked. Respondents suggested that MDA programs emphasize to people that the medications are identical to those previously distributed and that MDA programs have nothing to do with EVD

Is the neglected tropical disease mass drug administration campaign approach an effective strategy to deliver universal health coverage? A case study of the Liberia neglected tropical disease programme

Background Access to affordable, quality healthcare is the key element of universal health coverage (UHC). This study examines the effectiveness of the neglected tropical disease (NTD) mass drug administration (MDA) campaign approach as a means to deliver UHC, using the example of the Liberia national programme. Methods We first mapped the location of 3195 communities from the 2019 national MDA treatment data reporting record of Liberia. The association between coverage for onchocerciasis and lymphatic filariasis treatment achieved in these communities was then explored using a binomial geo-additive model. This model employed three key determinants for community ‘remoteness’: population density and the modelled travel time of communities to their supporting health facility and to their nearest major settlement. Results Maps produced highlight a small number of clusters of low treatment coverage in Liberia. Statistical analysis suggests there is a complex relationship between treatment coverage and geographic location. Conclusions We accept the MDA campaign approach is a valid mechanism to reach geographically marginal communities and, as such, has the potential to deliver UHC. We recognise there are specific limitations requiring further study

Psychological Resilience, Fragility and the Health Workforce: Lessons on Pandemic Preparedness from Liberia and Sierra Leone

COVID-19 presents a time to redefine vulnerability; however, in discussions of vulnerability, the health workforce, particularly in regard to their psychosocial well-being, is often forgotten. Healthcare workers (HCWs) in fragile settings are constantly exposed to health system shocks, including; conflict, disease outbreaks and natural disasters, which compound the everyday challenges of working in an under-resourced health system. Based on a commitment to serve their communities, they often cope with repeated shocks and protracted crises through innovation and creative thinking. However, they also experience repeated acute and chronic stressors that can lead to psychological distress. For some, prolonged exposure to risk of psychological distress can lead to personal growth, for others, continuous exposure to chronic stress and uncertainty can lead to psychological injury

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

Research priorities to support the development of integrated national strategies to control skin-neglected tropical diseases.

BACKGROUND: Skin-presenting neglected tropical diseases (skin-NTDs) impose large burdens on affected people, families and communities. The NTD Roadmap 2021-2030 presents a strategic plan to guide collaborative, multisectoral action to overcome these burdens, defining targets to control, eliminate and/or eradicate skin-NTDs by 2030. One of its targets is for 40 countries to adopt integrated skin-NTD strategies. Despite this high-level support for integration, only four countries were implementing integrated skin-NTD strategies in 2020. METHODS: We hosted workshops at the 2021 annual meeting of the Coalition for Operational Research on NTDs, to discuss the operationalisation of Roadmap goals into national strategies and interventions for skin-NTD control. Speakers included NTD Programme Managers from NTD-endemic countries, technical experts and researchers of different aspects of skin-NTDs. RESULTS: Challenges include community perceptions of interventions, demonstrating the cost-effectiveness of integrated care, availability and accessibility of community-based and primary healthcare services, the quality of data on skin-NTD morbidity and changes to operational structures required for integration. Research priorities included the identification of optimal case detection platforms, evaluation of integrated care, understanding the impacts of integration on community members and community health staff and development of point-of-care diagnostics. CONCLUSIONS: The operational research priorities are intended to support the scale-up of integrated skin-NTDs programmes