Full project tilte:
Assessing the effectiveness of family-based approaches aimed at prevention and sustainable self-management of disabilities, impacting the quality of life, mental wellbeing and participation of people with leprosy, podoconiosis and lymphatic filariasis and their families in the Amhara region, Ethiopia

Project coordination
Ethiopian National Association of People Affected by Leprosy (ENAPAL)

Partners
Debre Markos UniversityDisability Studies Nederland

Aim: This study assessed the effectiveness, longer-term outcomes and sustainability of the family-based approach aimed at prevention and sustainable self-management of disabilities due to leprosy, LF and podoconiosis, impacting the quality of life, mental wellbeing and participation of affected persons and their families in Ethiopia. 

Final project summary:
Leprosy, podoconiosis, and lymphatic filariasis (LF) are neglected tropical diseases (NTDs) that can lead to long-term disability when diagnosis and treatment are delayed. While leprosy can affect the eyes, hands, and feet, podoconiosis and LF primarily cause swelling of the lower limbs and recurrent episodes of painful inflammation. The consequences of these conditions extend beyond physical health, often affecting mental well-being, family life, social participation, and economic opportunities.

Recognising the important role that families play in supporting people affected by these diseases, this study evaluated a family-based intervention designed to improve disability management, enhance quality of life, and reduce stigma. Unlike earlier studies, the project used a rigorous cluster randomized controlled trial to assess both the effectiveness and the long-term sustainability of the intervention compared with routine care.

The study was conducted in the East and West Gojjam Zones of Ethiopia and involved 832 people affected by leprosy, podoconiosis, or lymphatic filariasis, together with their family members. Before implementing the intervention, the research team adapted and validated several tools in Amharic to ensure they could reliably measure family quality of life, stigma, and participation restrictions within the local context.

The intervention combined health education, disability management, socioeconomic support, psychosocial support, and community strengthening activities. Participants received information about their condition to improve understanding and reduce stigma, while practical training focused on self-care and disability management, including proper care of affected eyes, hands, feet, and legs. Families received essential materials such as shoes, socks, soap, and buckets to support self-care practices. The programme also promoted mental well-being, encouraged family involvement, and strengthened existing disability associations while supporting the development of new community support groups.

Data were collected before the intervention, immediately after completion of the programme, and again one year later. The findings demonstrated substantial and lasting benefits for participants and their families.

The intervention led to significant improvements in physical health. Among people affected by leprosy, problems involving the eyes, hands, and feet decreased considerably. Participants living with podoconiosis or lymphatic filariasis experienced meaningful reductions in swelling, with foot circumference decreasing by up to three centimetres and leg circumference by an average of two centimetres. The study also found fewer wounds, infections, and other complications associated with these diseases.

Participants who had previously experienced frequent acute attacks reported a marked reduction in these episodes following the intervention. As a result, they experienced greater comfort, improved mobility, and were better able to work, care for their families, and participate in everyday community life.

The programme also had a significant positive impact on family well-being. Measures of family quality of life improved steadily throughout the intervention and remained high one year later, suggesting that the benefits were sustained over time. This highlights the value of involving family members in care and support, rather than focusing solely on the individual affected by the disease.

Beyond the physical improvements, participants reported important social and psychological benefits. Experiences of stigma decreased, people felt less isolated, and symptoms of depression were reduced. Many participants reported greater confidence and increased participation in community activities. Families also gained a better understanding of the diseases and developed more positive attitudes towards disability, helping to create a more supportive home environment.

Overall, this study demonstrates that a family-based approach can significantly improve the lives of people affected by leprosy, podoconiosis, and lymphatic filariasis. By integrating medical care, self-care education, psychosocial support, and practical assistance, the intervention delivered lasting improvements in health, well-being, and social inclusion. The findings provide strong evidence that family-centred approaches can play a vital role in reducing disability and stigma and should be considered in future NTD programmes and policies in Ethiopia and other similar settings around the world.

Impact

van't Noordende, A. T., Aycheh, M. W., Moges, N. A., Tadesse, T., & Schippers, A. P. (2022). Family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis versus usual care in Ethiopia: study protocol for a cluster-randomised controlled trial. BMJ open, 12(3), e056620.

Aycheh, M. W., van’t Noordende, A. T., Moges, N. A., & Schippers, A. P. (2023). The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy or podoconiosis in Northwest Ethiopia. PLoS Neglected Tropical Diseases, 17(10), e0011235.

Aycheh, M. W., van’t Noordende, A. T., Moges, N. A., & Schippers, A. P. (2026). Family quality of life and associated factors among people with leprosy or podoconiosis/lymphatic filariasis with visible disabilities and their family members in Ethiopia: a baseline study for a randomized controlled trial. Transactions of the Royal Society of Tropical Medicine and Hygiene, 120(3), 199-210.