In Liberia, a country ranking 181st out of 188 on the human development index, researchers will test whether integrated, person-centred health systems can reduce the devastating physical, psychological, and economic toll of severe stigmatising skin diseases (SSSDs) like Buruli ulcer and leprosy. For people with SSSDs, fragmented care often means delayed diagnosis, catastrophic out-of-pocket costs, and lifelong stigma that can destroy livelihoods and social standing. Liberia is one of the first countries to attempt a national integrated approach to managing these diseases, but evidence on how to deliver such services equitably and at scale is almost non-existent. The REDRESS project will fill that gap by evaluating current detection, referral, and treatment pathways, then co-designing and testing new interventions with patients, families, and health providers. If successful, the project will produce affordable, sustainable models for managing SSSDs that could be adapted across sub-Saharan Africa. The goal is not just better clinical outcomes, but a health system that routinely addresses the social and financial consequences of these diseases, reducing stigma and preventing the catastrophic impoverishment that currently follows a diagnosis.
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Research question To what extent can integrated person-centred approaches improve the equitable and effective management of SSSDs whilst contributing to health systems strengthening? Background For many persons with severe stigmatising skin diseases (SSSDs), lack of access to effective service provision results in significant physical and psycho-social consequences, complex treatment journeys, and catastrophic socio-economic impacts. Integrated health system approaches to managing SSSDs have been proposed as a key solution to these challenges, to address equity and effectiveness issues. Liberia is one of the first countries in the world to develop a national integrated approach to managing SSSDs. However, evidence on optimal approaches, the quality of services delivered, and how to implement services at scale to ensure equitable delivery, is limited. Liberia is an OECD state of fragility, ranks 181/188 in the human development index and is prioritised by DFID and other global health stakeholders. Aims and Objectives Using a person-centred approach, we will evaluate, develop and adapt health systems interventions for the management of SSSDs in Liberia to generate learning for other settings in sub-Saharan Africa by: i) Identifying effective strategies to detect, refer, treat and support people living with SSSDs that are acceptable, affordable and sustainable especially amongst the most vulnerable ii) Designing and testing innovative health systems interventions that are responsive to both biomedical and social support needs by assessing persons living with SSSDs, family, and provider perspectives and priorities at different levels iii) Enhancing quality and equity of approaches that will see all persons living with SSSDs receiving essential, effective and affordable treatment, care and support at the individual, family, community and facility level. Methods & Timelines REDRESS will take a multi-disciplinary systems approach to assess SSSD management. There are four core themes of focus throughout: Clinical effectiveness, epidemiology, and lab-systems strengthening; health financing; human resource management; and patient engagement and person-centred approaches; and two cross cutting themes: evidence translation and implementation, and capacity strengthening. We will utilise an action research approach to study design and delivery. During phase one (year one, formative research), we will evaluate existing integrated approaches to the detection, referral and treatment of SSSDs across our core themes. In phase two, (year two, planning), we will synthesise evidence from across core-themes and come together with community and health systems stakeholders to collaboratively develop new interventions. In years 2 and 3, phase three (action), will see the implementation of innovative interventions and phase four (observation and reflection), will focus on multi-disciplinary evaluation of our new interventions across our themes. In phase five (throughout, but intensified in Year 4, knowledge translation and policy change), we will work with National and Regional programme implementers to embed successful components of piloted interventions within routine management of SSSDs, so that impact can be realised at scale. Dissemination and Anticipated Impact Our approach will allow our partnership to co-develop and disseminate new knowledge with regional and global relevance on affordable, timely, appropriate and improved management strategies for SSSDs that reduce stigma and address other social issues for affected vulnerable populations.
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