As I get an opportunity to write this blog, I want to start by writing a proverb which called as “Health is a hidden treasure; only the sick know its value!” On my reference, it is a Nigerian proverb which I always infer when I come up to talk about health.
I have gotten the chance to conduct research with some Dutch researchers on disability management caused by leprosy, podoconiosis, and lymphatic filariasis using the family-based approach. At the outset, I was passionate about teaching, contributing something for changing attitude and showing the practice of self-care of people affected by chronic diseases like noninfectious elephantiasis (podoconiosis); and I do have experience previously in this regard. Keep this in mind and now I am working on the agenda of a family-based approach of disability management caused by the listed diseases.
These diseases (leprosy, podoconiosis, and lymphatic filariasis) cause not only health matters on the affected people, but also social, psychological and economical problems. As facts, all three diseases have led affected people to disabilities. The impacts of the diseases go beyond the affected persons towards the families. As a result, family has also faced difficulties in many extents of their family quality of life because of the presence of the affected family member.
As for podoconiosis and lymphatic filariasis:
More or less, the disability impact of podoconiosis and lymphatic filariasis is common in the area. Because of this, nowadays, the issue gets more attention by policymakers and is incorporated in the health care systems of Ethiopia. Guidelines for morbidity management and disability prevention of lymphatic filariasis and podoconiosis have been developed and are already implemented in the government health system.
As for leprosy, the situation is different:
The government of Ethiopia ministry of health has developed and implemented leprosy case management in health institutions. Through time the burden of leprosy cases exhibited decrements but the management of disability created by leprosy is still not fully addressed. Some steps are taken, though.
A family-based approach for sustainable disability management is a commonly used method in developed countries, but there is limited research about using this method in developing countries including Ethiopia.
Because of these facts we started a pilot project to apply a family-based approach for disability management of leprosy, podoconiosis and lymphatic filariasis. When we applied this method in Ethiopia, it was an important consideration to turn geographical variation, religion and cultural matters into an advantage. In the area were we did our research, Awi Zone, Northwest Ethiopia, disability because of leprosy, podoconiosis and lymphatic filariasis is common, but was not addressed by the family-based approach before our project started.
Besides this, family help for the disease affected person is an obligatory activity by religion order. And finally, it is a cultural practice that, out of respect for her husband, the wife washes his feet, and children do this for their mother. This practice could form a basis for developing a family-based approach to self-care and disability management. Self-care and disability management consist of foot hygiene using soap and water, skincare with the removal of callous, application of the ointment, elevation and exercises, and bandaging. Advice on appropriate footwear is also an important part of disability management.
Another aspect in favor of a family-based approach is that people do not like to expose their problems outside the family, but prefer to keep matters to themselves. Based on this, we have got a good outcome of the family-based approach of disability management intervention as improving the family quality of life of disease affected persons and their families. Even so, a randomized controlled trial is needed to associate and see the long term sustainability of the family-based approach by comparing it with the usual management of the control group.
Moges Wubie is an Assistant Professor in Tropical and Infectious Diseases in Debre Markos University in Ethiopia and Freelance employer in Ethiopian National Association of People Affected by Leprosy (ENAPAL) as researcher. His research is focused on family-based approaches aimed at prevention and sustainable self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis within the family.