Projects
- Research priorities: Operational research
- Country: Ghana
- Budget: €100,166 | Project number: FP23.9
- Duration: March 2023 -August 2025
- Status: Ongoing
The primary research question is: how can persons affected by leprosy support early case detection and DMDI in rural settings, specifically in the Upper West Region of Ghana?
The role of persons affected as agents of change in their community: leprosy peer mentors to support case detection, DMDI and stigma reduction.
Project coordination
Partners
- Ghana National Leprosy Control Program
- IDEA-Ghana
- Leper’s Aid Initiative (Catholic NGO)
Project summary
The primary research question for this study will explore how individuals who have previously been diagnosed with leprosy and effectively treated can support early case detection for new cases and support disease management, disability, and social inclusion.
This proposed study is the result of findings from an on-going study where the research team identified that these individuals are already serving an organic role as peer-mentors and supporting case detection, referral, and health education. Based on these initial findings, there is a need to learn more about what is already happening with peer-mentors at the community level and assess ways in which persons affected could be encouraged and supported to continue to serve this role as agents of change in their community and support overall leprosy targets and program objectives.
The role of peer-mentors to support positive health behaviors has been documented in other disease settings, such as HIV and maternal and child health. Furthermore, the role of peer mentors has been well documented in terms of stigma reduction for leprosy, but not necessarily in terms of case search and disease management. Globally, across the leprosy community, there is a focus on cost-effective cases search, active engagement of personas affected, activities to support early case detection to prevent leprosy related disability, and an overall priority on stigma reduction.
Secondary research questions of this study include understanding what may already be happening in communities in terms of peer-engagement and what a realistic model to improve peer mentoring could look like. The research team will also assess how a peer-based model for case search may impact individual empowerment and well-being as well as overall stigma within the community.
The study will be implemented through four phases. The first phase will involve interviews with existing mentors and health workers to understand the current role persons affected play in case search, referral, disease management and inclusion. The goal is to identify a number of individuals who are already serving a mentor role and invite them to participate in the subsequent phases of the study. Phase 2 will involve more in-depth interviews with both mentors and new cases to learn more about their experience and perceptions, as well as successful and challenges. During Phase 2, the research team will also conduct a health facility assessment to understand the capacity of facilities to receive referred patients. Based on the findings from Phase 1 and 2, phase 3 will involve planning workshops to design an optimal model for community-based peer mentoring and case search. Phase 4 will involve a pilot implementation of the recommended model, including an evaluation and dissemination of the success and lessons learned.
Results from this study will be valuable to a number of stakeholders and can be used to test similar approaches in other settings.
Co-financer: St. Francis’ Leprosy Guild
- Research priorities: Stigma and discrimination
- Country: India
- Budget: €107,268 | Project number: FP23.4
- Duration: July 2023 - June 2025
- Status: Ongoing
This study aims to address the following research question; To what extent can compassion training that specifically addresses stigma improve compassion and quality of care offered by health workers to persons affected by leprosy and other stigmatizing health conditions?
Compassion training for reducing stigma and improving quality of care for persons affected by leprosy
Project coordination
Partners
- The Task Force for Global Health
- NLR
- Association of People Affected by Leprosy (APAL)
- Emory University,Atlanta,USA
- Life University, GA,USA
Project summary
Compassion refers to “a virtuous response that seeks to address the suffering and needs of a person through relational understanding and action”. Compassion is often considered the hallmark of quality care, it is ranked among the greatest healthcare needs by patients and their family members and considered essential for quality universal health coverage. Especially in the context of stigmatised conditions, compassionate care is crucial. Many persons with a stigmatised condition, such as persons affected by leprosy, experience stigma and discrimination. Health workers often participate in stigmatizing beliefs and practices that exist within their communities. It is impossible for these health workers to provide respectful, compassionate care, as stigma is a major barrier to compassion. This compromises the quality of healthcare offered to persons with stigmatizing conditions, and it reduces access to services, as persons with stigmatised conditions would avoid further dehumanization by the health system.
While randomised controlled trials have demonstrated that compassion-based training can improve compassionate responses to suffering, little work on compassion has been done specifically in the setting of leprosy. We hypothesize that a stigma-informed compassion-based training can 1) reduce health worker stigma, 2) improve quality of health services for persons affected by leprosy, 3) improve communication in and trust within routine care; and 4) increase self-esteem and stigma resilience among persons affected. We hypothesize that these changes would eventually lead to compassionate care leadership.
The main research question of this study is “to what extent can compassion training that specifically addresses stigma improve compassion and quality of care offered by health workers to persons affected by leprosy and other stigmatizing health conditions?”
The research group will conduct a before-after study design with a mixed methods approach. The project will be implemented in Bokaro district, Jharkhand state, India. Bokaro district has 17 primary health care centres. The research group aims to train all health care workers from the 17 primary health care centres (50 health care providers). This study has three main phases:
(1) Exploration phase. In this phase, the researchers will explore how patients, their family members and health providers understand and experience compassion (this will also serve as baseline measurement).
(2) Intervention development and adaptation phase. In this phase, a compassion training curriculum will be developed, based on results of the Exploration phase and CIT. CIT includes components of meditation techniques, interactive discussions, lectures and exercises. The training will be adapted based on the baseline/phase 1 findings.
(3) Implementation, evaluation and dissemination phase. In this phase, the training will be piloted across 17 primary health care centres (PHCs). In this phase, we will also evaluate the training (using the same methods as at baseline). Once evaluated, the training will be made freely available online.
- Research priorities: Operational research
- Country: India
- Budget: €44,568 | Project number: FP22.17
- Duration: June 2022 - November 2024
- Status: Ongoing
The study aims to investigate whether removable off-loading devices are as effective as total contact cast to promote healing of non-complicated plantar ulcers.
Removable off-loading devices versus total contact cast to promote healing of plantar ulcer in Leprosy: a non-inferiority, randomized control trial
Project coordination
Project summary
Ulcer on the sole of the foot is a serious complication of leprosy. This happens because touch and pain sensations are lost due to nerve damage. Ulcers are inevitable despite leprosy-affected persons education to protect their limbs while engaging in the routine activities and work. The prevalence of ulcer ranges from 20% to as high as 50% requiring frequent hospital visits and admissions. One in two admissions and over 50% of bed days are utilized for ulcer care in leprosy hospitals, draining the existing resources. The chronic nature of the ulcers, forces patient to make a trade-off between work and treatment. The affected individuals often continue to walk and work as they do not feel pain or discomfort and report to the hospital very late.
Ulcer care is almost always institutional-based and provided by the leprosy centres (nongovernment organization) often located far from patients’ home addresses. Total contact plaster has been the accepted as effective strategy to expedite healing of ulcers. This reduces the pressure on the ulcer(referred to as ‘off-loading’) facilitating healing. One needs a high level of skill to apply total contact cast and improper applications can lead to serious complications. Therefore, in this proposed non-inferiority randomized control trial, the researchers aim to compare an innovative removable off-loading device (with the imbedded excavated insole under wound area) to the regular total contact plaster cast in healing of ulcers. The new device is easier to customize by health care staff and patients can use it in their homes thus making it more acceptable and user-friendly.
Patients with non-complicated ulcer will be randomly allocated to either the intervention group (removable cast) or the control group (total contact cast). The ulcer dressing, self-care teaching and other clinical care will be similar in both the groups. Patients will be recruited from a two large leprosy referral centres in North and Eastern part of India. The study centres have sufficient expertise in ulcer care in leprosy.
The primary outcome of the study will be the number of patients with healed ulcer at 6 weeks from recruitment or complete closure of the ulcer whichever is earlier and the reduction in the ulcer surface area as assessed using the standard tool, as time to heal in days. Secondary outcomes include ability to perform daily activities independently with the device, user satisfaction with off-loading devices used and the quality of life at 6 months from the recruitment. The study will provide evidence of the effectiveness of using removable casts for patients with non-complicated ulcers.
Co-financer: St. Francis’ Leprosy Guild
- Research priorities: Transmission
- Country: Nepal
- Budget: €143,803 | Project number: FP22.19
- Duration: March 2022 – February 2025
- Status: Ongoing
The study aims to provide this scientific evidence of the effectiveness of SDR-PEP in preventing leprosy among contacts in a routine programme setting. It also aims to provide a better understanding of the impact of ongoing SDR-PEP implementation on new case detection rate at district level.
How effective is ongoing SDR-PEP implementation under routine programme conditions – a retrospective cohort study in Nepal
Project coordination
Partners
Project summary
Leprosy, a neglected tropical disease, continues to disrupt the lives of people. The disease burden is higher in low-income countries. The affected people often face stigma and discrimination due to its disabling factor which leads the persons and their families to further poverty. Nepal is one of the top ten countries in the world where leprosy is a burden.
The current control strategy of leprosy, based on case detection and treatment with multidrug therapy (MDT), was introduced in 1982. MDT is an effective treatment, but it has insufficient impact on the leprosy incidence rate, as leprosy transmission is not interrupted.
It has been shown that contact tracing combined with the provision of post-exposure prophylaxis (PEP) with single-dose rifampicin (SDR) may reduce the risk of developing leprosy in contacts by 60%. Findings from different studies, such as, the PEP trial in Indonesia, the ‘COLEP’ study in Bangladesh and the LPEP study has shown its effectiveness and the feasibility of integrating chemoprophylaxis into routine leprosy control. SDR-PEP therefore is a promising new leprosy elimination strategy and recommended by the World Health Organization (WHO) Guidelines for the Diagnosis, Treatment and Prevention of Leprosy in 2018, as preventive treatment for contacts of leprosy patients. Additional practical evidence is needed to demonstrate the impact of SDR-PEP when this strategy is implemented as part of routine leprosy control.
The research question this project aims to address is therefore: How effective is contact screening and SDR-PEP implementation, as part of routine leprosy control, in preventing leprosy among contacts who received SDR-PEP, 4-7 years post intervention?
During the project period, 14,100 contacts who received SDR-PEP and same number who did not receive SDR-PEP between 2015 and 2019 in cohort and control districts will be assessed for leprosy. Similarly, all new leprosy cases detected during the same period among contacts in all these districts will be assessed.
- Research priorities: Stigma and discrimination
- Country: Niger
- Budget: €199,835 | Project number: FP22.6
- Duration: April 2022 - September 2025
- Status: Ongoing
The study aims to develop and test the effectiveness of a replicable stigma-reduction intervention to improve leprosy knowledge and to reduce negative perceptions and stigmatising behaviours towards Leprosy patients among HCWs in endemic communities in Niger.
Understanding & Reducing Leprosy-Related Stigma Among Healthcare Workers in Niger
Project coordination
Partners
Project summary
Neglected Tropical Diseases (NTDs) are endemic in Niger Republic. These diseases and their consequences are especially common among rural populations. Leprosy is a NTD that persists in Niger, despite efforts to increase access to care. In 2019, 333 new cases of leprosy were diagnosed nationally, of which 23% had advanced disability, an indicator of late case detection. This is partly due to the stigma associated with the infection and its physical sequalae even after the disease has been treated successfully. Stigma caused by leprosy is deeply rooted in history and permeates every aspect of society, including the healthcare system. Preliminary evidence of stigma directed at patients by healthcare workers (HCWs) and lack of knowledge of leprosy among HCWs indicate the need to identify leprosy-stigma reduction activities if the disease is to be eradicated through access to early screening, treatment and rehabilitation.
The goal of this study is to utilize a community-based participatory approach to develop and test a leprosy-stigma training programme among health workers in 16 regional health centres in Niger. The study has two phases. First, using the WHO stigma framework, it aims to identify the local and contextual reasons behind stigma directed at patients by HCWs, and the resulting impact on people affected by leprosy. An understanding of these elements is necessary to develop and invest in effective leprosy stigma-reduction strategies and will contribute to the Zero Transmission / Zero Disability agenda.
A second phase of the study aims to develop and test the feasibility, acceptability and effectiveness of a training programme to reduce stigmatizing attitudes and behaviours among HCWs. Results will provide a contextual, yet replicable model for Leprosy stigma-reduction programme.
This study will be conducted collaboratively with active involvement of all stakeholders, including the national and international study team, healthcare providers, leaders and members of communities of persons affected by leprosy. The study will use a mixed method design to identify the elements of leprosy-related stigma perpetrated by HCWs, the impact on people affected by leprosy, and the development and testing of a leprosy stigma-reduction program targeting HCWs.