Projects
- Research priorities: Operational research
- Country: India, Nigeria
- Project no.: FP24\21
- Budget: €102,520
- Duration: June 2024 - May 2026
- Status: Ongoing
- Co-funding partners: St Francis Leprosy Guild
Full project title:
Capacity Building for Leprosy
Project coordination
The Leprosy Mission Nigeria
Partners
GLRA India
NLR
LTR Nigeria
The Leprosy Mission Trust India
Aim: The primary aim of this study is to build evidence on the quality and impact of blended training packages developed as part of the Lift Leprosy Learning project and piloted in Nigeria and India based on identified learning needs of health workers (at community level, service level and supervisory level). This evidence will add to the limited body of evidence on blended learning in leprosy (and other NTDs).
Project summary
The CapaBLe (Capacity Building in Leprosy) research project aims to study the effect of updated, modernized training materials developed for those working with people affected by leprosy.
Leprosy, a neglected tropical disease caused by leprosy bacteria and affecting the nerve system, can cause paralysis and loss of sensation leading to complications such as wounds, infections and blindness. Although great progress has been made in the treatment of leprosy in past decades, over 200.000 new cases are still diagnosed each year. Missing these cases risks the disease to spread again causing more medical, social and economic suffering. Envisioning a world without this disease asks for effective early diagnosis and treatment of patients, which requires skilled project managers, supervisors, health staff and community health workers, who are the target group of our project.
Training of new people remains important. In 2021 the International Federation of Leprosy Organizations concluded that knowledge gaps exist at all levels of leprosy programs and approaches used to train people were outdated and not sustainable. Over the years, effective learning approaches and new digital developments such as telemedicine and e-learning have emerged. These new opportunities are also available in the field of leprosy. Hence, a group of leprosy organizations initiated the Lift leprosy Learning project (2023-2025) to develop and pilot modernized training approaches and materials, building on existing knowledge.
The two year CapaBle project will study the effect of these modernized training packages (a combination of on-line and face-to-face modules) in pre-selected areas in India and Nigeria. The packages are being defined based on the needs of the target group in the two countries in close collaboration with the Ministry of Health. To measure the effect the study will use different research methods: testing of knowledge (before and after trainings), interviewing trainees and trainers about their experience, observing trainees diagnosing or treating leprosy patients, and calculating the costs of these trainings. We also plan to compare and identify differences between the effect of training people in a single disease (as is the case in India) and offering training in an integrated multi-disease manner (Nigeria). Study results will provide evidence on the effect of the trainings, and insights on what does and does not work in different locations. This information will be useful for improving trainings; to convince others to use the trainings in other countries, and to add more evidence to what we already know about certain training approaches.
- Research priorities: Disability
- Country: India
- Project no.: FP24\19
- Budget: €206,665
- Duration: July 2024 - October 2026
- Status: Ongoing
Full project title:
Establishing the effectiveness of a peer support approach based Basic Psychological Support for NTDs (BPS-N) to address mental wellbeing, stigma and social participation of persons affected by leprosy and lymphatic filariasis in Jharkhand, India
Project coordination
NLR India Foundation
Partners
GLRA India
Central Institute of Psychiatry, Ranchi, Jharkhand
NLR
Association of Persons Affected by Leprosy (APAL)
LEPRA Society
Aim: This study aims to evaluate the effectiveness of BPS-N-based peer support for addressing stigma, mental well-being and social and work participation of persons affected by leprosy or LF.
Project summary
India is home to a large proportion of the global burden of leprosy and lymphatic filariasis (LF), two neglected tropical diseases (NTDs). Both leprosy and LF can cause life-long and irreversible disabilities which can lead to serious problems . The fact that these affected people are not participating in important aspects of life can be explained by the stigma that exist. Together, the disabilities, limited participation and negative environment can cause people affected by leprosy or LF to experience poor mental health, depression and/or anxiety.
In 2020 and 2021, NLR India Foundation developed Basic Psychological Support for persons affected by NTDs (BPS-N) guide. This is an intervention that aims to reduce the psychological consequences by providing support to people affected by leprosy or LF. The intervention is delivered by peers, other people who have (had) leprosy or LF who provide support. The first results from the BPS-N implementation when piloted in India, showed promising results. However, the actual effectiveness of this tool has not been studied yet. This research proposal aims to develop a project to test the effectiveness of peer support based on BPS-N, for addressing issues related to stigma, mental well-being and participation among persons affected by leprosy or LF. In this study we will compare the mental wellbeing of people affected by leprosy or LF who will receive the BPS-N intervention with a group of people affected by leprosy or LF who will not receive this. This will hopefully provide additional evidence on the potential of this intervention to improve the (mental) well-being of persons living with NTDs.
The study will be conducted in two districts in Jharkhand state, India (Garhwa and Palamu. Our study will consist of three phases:
1) During the first phase, we will prepare all study material, we will also train the peer-supporters on the use of the BPS-N guideline, and collaborate with local government departments. Further, we will identify all participants for the study, these include the peer supporters, people receiving the peer-support intervention, and the people who will not receive the intervention. Who belongs to which group, will be randomly decided based on their geographical location.
2) During the implementation phase, the peer-supporters will receive a training and then provide the BPS-N intervention to the people affected by leprosy or LF. Meanwhile, the researchers will collect information about the mental wellbeing, participation and stigma of the study participants. They will also be interviewed and asked how they experienced the intervention. In addition, the local health and social services will be involved. The researchers will also collect information about how the BPS-N intervention can be integrated with their services.
3) The last phase will focus on evaluating the effects of the intervention, by comparing all collected information stigma, mental wellbeing and participation with the initial levels and between the groups. Recommendation will be written up and offered to the health and social services in Jharkhand state how to integrate the BPS-N intervention in their existing programmes.
- Grant: Research Capacity Strengthening Grant
- Budget round: 2023
- Research priorities: Diagnostic tests
- Country: Nepal
- Project no.: FP23_CS.6
- Budget: € 19,750
- Duration: October 2023 – September 2025
- Status: Ongoing
The study aims to further validate the use of thermography in leprosy diagnosis and monitoring of nerve impairment.
Thermographic assessment of autonomic innervation in Leprosy
Project coordination
Project summary
Leprosy affects the nerve function of the affected body parts. The changes can be felt as weakness in muscles, unable to feel, touch, and dryness mainly in hands and feet. It is easy to monitor muscle weakness and loss of sensation but not the dryness in hands and feet. There are previous studies that correlate skin temperature and skin nerve activity. There have been great advances in infrared thermography in recent years and has been used in various clinical diagnoses.
We can use thermography or electric conductance of the skin to quantify neurological function. Research has proven that thermography can measure disruptions in skin temperature and can be used as an assessment tool for diagnosing neuropathy. The study is designed and aims to further validate the use of thermography in leprosy diagnosis and monitoring of nerve impairment. Thermography is an easy and noninvasive tool that aids in the diagnosis and early detection of nerve impairment in leprosy.
- Grant: Research Capacity Strengthening Grant
- Research priorities: Operational research
- Country: Nigeria
- Project no.: FP23_CS.5
- Budget: € 20,000
- Duration: September 2023 – October 2025
- Status: Ongoing
This study engages the theory of “collaborative co-design” to role model and deliver lessons on optimal educational collaboration between academic researchers and practitioners (dermatologists, GHWs) to have the greatest coverage and impact for persons affected by skin NTDs, such as leprosy.
Collaborative co-design to optimize evidence-based and contextual general health worker training in
integrated screening for leprosy and other skin NTDs in Nigeria
Project coordination
Project summary
Because a lot of Nigerians have diseases related to their skin, and there are not enough specialty doctors (dermatologists) to treat such illnesses, it is necessary to increase early checks on individuals for skin disease and to train other health workers to provide the care that doctors have been. This means that support workers called General health workers (GHW) are important people to train. But, GHW’s do not learn much about skin diseases. This is especially the case for neglected tropical skin diseases (skin NTDs) such as leprosy, which can cause disability, exclusion and discrimination. To successfully improve this knowledge gap and foster early diagnosis and treatment of patients with skin NTDs, it is important to not only train GHWs, but to involve them in the design of their training.
This study will use both numerical and language-based information in three different steps. First, we will study what other researchers have written about GHW training for looking at skin diseases, and hold a meeting with GHWs themselves to plan a training. Second, we will conduct three training sessions with Nigerian GHWs, and collect numeral information about whether it was good or not, and whether GHWs learned from it. Third, we will ask the GHWs, and trainers what they learned that can be applied in other places and programmes. This study will give us a well-designed training that can be used by others in different places in the future, a research paper about what we found, a research paper saying what the literature says about such training; and improved skills of participants, including Nigerian GHWs. All materials which resulted from this study will be made available free of charge (open-access) to further enhance capacity strengthening in recognizing leprosy and other skin NTDs internationally.
- Research priorities: Operational research
- Country: India
- Budget: €82,695 | Project number: FP23.19
- Duration: April 2023 - June 2025
- Status: Ongoing
This study will address the following question: What are the perspectives of persons affected by leprosy, their families and healthcare providers on living with chronic aspects of leprosy, to formulate a guideline that can address care after multi-drug treatment?
Addressing healing after multi-drug treatment centred around perspectives of persons affected by leprosy, their families and healthcare providers: a qualitative study
Project coordination
Project summary
Leprosy is an illness with chronic implications, having multidimensional impacts on the patient’s life. Persons affected by leprosy continue to face challenges beyond the completion of Multi Drug Therapy (MDT), as the consequences of nerve damage are lasting, requiring lifelong care. Despite being declared cured medically at the end of their MDT treatment, persons affected by leprosy with impairments themselves feel that they are not cured because they still suffer from persisting symptoms. They continue to endure lingering disabilities, other related difficulties, and stigma. The current model of care does not acknowledge or address the chronic nature of leprosy and the needs of persons affected who are released from treatment (RFT). They continue to struggle with the physical and psychosocial consequences of leprosy without any systematic support from healthcare providers. Though there are few studies that quantify the disabilities faced post-RFT, there are no standard guidelines or holistic care models addressing the needs of persons affected by leprosy to help them on their recovery journey.
This study attempts to understand the perspectives of care after cure in leprosy from the point of view of both patients, the family members and healthcare providers through interviews. Through a literature review, this study will draw lessons from other illnesses like diabetes, tuberculosis, HIV/AIDS and schizophrenia which are similar to leprosy in terms of chronicity, to look beyond the concept of cure, and to identify measures to promote healing. Based on the learnings from the literature and perspectives of the stakeholders, we will attempt to develop a set of guidelines that will help inform care of the chronic aspects of leprosy. The researchers propose that the adoption of the concept of healing will add a new dimension to leprosy care and if incorporated into practice, it would empower people with leprosy to live meaningful lives, even with persisting symptoms.