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 practised. 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. In this project, we therefore want to explore how family members can be involved in self-management and prevention of impairments of their affected family member: a family based-approach.
Our 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 project consists of 5 steps:
Step 1: People affected by leprosy, podoconiosis or LF and their family members will be asked to participate in semi-structured interviews. They will be asked about their lives, family lives, care, support and possible idea for a family based approach. In addition, three quantitative measures will be used as a baseline measure to assess family and individual quality of life and stigma levels.
Step 2: Based on the opinions and needs of participants, a family-based approach will be developed.
Step 3: The family based approach that has been developed will be piloted in the Agew Awi zone.
Step 4: The people that have participated in the pilot studies will be asked about their experiences and possible outcomes during interviews and focus groups. Also, several quantitative measures will be used to check the effect of the family based approach.
Step 5: The family based approach will be adjusted based on the experiences of the pilot.
Research assistants collecting the data will be people recruited from organizations and projects about leprosy, podoconiosis and LF. They will receive training and work together with someone from the University of Debre Markos, and the Ethiopian partners and researchers from the Netherlands. After this exploratory project, the family based approach that has been developed will be ready to test in further research.
This current study aims to investigate how prevention and self-management of disabilities can be strengthened and made more sustainable using family-based approaches in the Ethiopian context and to develop a feasible family-based strategy to support prevention and self-management of disabilities.
In order to gain an understanding of the perspectives of people with leprosy, podoconiosis and LF and their family members, qualitative methods will be used. The study has two phases: one exploratory phase, which will lead to the development of one or two family-based approaches. In the second (and pilot) phase, these approaches will be tested for feasibility and acceptability and evaluated through qualitative interviews, quantitative instruments and focus groups.
[not availabe yet]
Start year of project: 2017
Duration of the project: 2.5 years
Research line(Family) Quality of Life
Researchers / project members
Tesfaye Tadesse, Fikre Hailekiros Gidey, Tanny Hagens, Alice Schippers, Anna van ’t Noordende, Girmay Tsegaye, Moges Wubie
People or organisations involved in the project
Ethiopian National Association of People Affected by Leprosy (ENAPAL), The Leprosy Mission International (TLMI) Ethiopia, NLR (Leprastichting), Debre Markos University and Disability Studies in the Netherlands.
The research team will consist of the Ethiopian partners, Ethiopian researchers and research assistants, and researchers from the Netherlands.
Participation of people with disabilities
This research will be led by and partly carried out by the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), a large Ethiopian leprosy DPO. They have been closely involved in the development of this proposal. People affected by leprosy, podoconiosis and LF will be involved in the selection of family-based approaches. The research assistants will preferably be people affected by leprosy, podoconiosis or LF.
Other project partners include NLR (Amsterdam, the Netherlands), Debre Markos University (Debre Markos, Ethiopia) and The Leprosy Mission International (Addis Ababa, Ethiopia) and DSiN.
Mr. Tesfaye Tadesse, BSc
Ethiopian National Association of People Affected by Leprosy (ENAPAL), Ethiopia