Project coordination
Ethiopian National Association of People Affected by Leprosy (ENAPAL)
This project explores family-based approaches aimed at prevention and sustainable self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis.
Exploring family-based approaches aimed at prevention and sustainable self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis within the family
Duration of project
April 2017- September 2019
Project coordination
Ethiopian National Association of People Affected by Leprosy (ENAPAL), Ethiopia
Partners
- National Podoconiosis Action Network (NaPAN), Ethiopia
- The Leprosy Mission International (TLMI)
- Ethiopia Disability Studies
- Metamedica, VU Medical Centre, Netherlands
- Debre Markos University, Ethiopia
Project summary
People with leprosy, podoconiosis and lymphatic filariasis (LF) often experience restrictions in their daily lives, due to their impairment. Most impairments, such as wounds or swelling, can be prevented when self-management is practiced. There have been efforts to formulate self-care groups, in which people with leprosy, podoconiosis and LF meet and support each other on a regular basis. However, the involvement of families in preventing disabilities has received little attention. Therefore, this project wants to explore how family members can be involved in preventing impairment of their affected family member: a family based-approach.
The main research question is: In what way can families or family members of people affected by leprosy, podoconiosis and lymphatic filariasis (LF) contribute to sustainable prevention and self-management of disabilities?
The exploratory phase of the project consists of 2 steps:
(1) People affected by leprosy, podoconiosis or LF and their family members as well as key-informants will be asked to participate in semi-structured interviews. They will be asked about their lives, family lives, care, support and possible interest in a family-based approach.
(2) Based on the opinions and needs of participants, a family-based approach will be developed.
Pending the results of the exploratory phase – the project may continue with a pilot phase during which the feasibility and acceptability the newly developed family-based approach will be tested by affected families.
The research team consists of local researchers and research assistants – as well as researchers from the Netherlands. The research assistants collecting the data will be recruited from organizations and projects about leprosy, podoconiosis and LF. They will receive training and work together with a researcher from the University of Debre Markos, as well as with the Ethiopian (co-)applicants and researchers from the Netherlands.
Budget
€ 49,947
Project number: 705.17.30
Related publications
Van't Noordende, A. T., Aycheh, M. W., & Schippers, A. P. (2020). An exploration of family quality of life in persons with leprosy-, lymphatic filariasis–and podoconiosis-related disabilities and their family members in Ethiopia. Transactions of The Royal Society of Tropical Medicine and Hygiene, 114(12), 1003-1012.
van ‘t Noordende, A. T., Aycheh, M. W., & Schippers, A. (2020). The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia. PLoS neglected tropical diseases, 14(3), e0008173.
van‘t Noordende, A. T., Aycheh, M. W., Tadesse, T., Hagens, T., Haverkort, E., & Schippers, A. P. (2021). A family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis in Ethiopia: A proof of concept study. PLoS neglected tropical diseases, 15(2), e0009167.