A qualitative study on the implementation of a holistic care package for control and management of lymphoedema: experience from a pilot intervention in northern Ethiopia

Abstract

Background Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis (LF) and leprosy mainly affect communities in low resource settings. These diseases are associated with physical disability due to lymphoedema as well as poor mental health and psychosocial outcomes. Integration of care across these NTDs at primary health care level, which includes mental health and psychosocial care alongside physical health care, is increasingly recommended. Methods A holistic integrated care package was developed and piloted as part of the EnDPoINT project in Gusha district, Awi zone, Ethiopia. The intervention was conducted at the health care organization, health facility and community levels. To assess the impact of the care package in terms of acceptability, scalability, sustainability and barriers to implementation, a qualitative study was conducted in January 2020. This included four focus group discussions (29 participants) and ten key informant interviews with decision makers, health professionals, patients, and community representatives. Results The integrated lymphoedema care package was found to be efficient compared to vertical programs in saving time and resources. It also resulted in improved awareness of the causes, treatment and prevention of lymphoedema, in marked improvements in the lymphoedema, and in reduced stigma and discrimination. The care package was found to be acceptable to patients, health professionals and decision makers. The barriers to integrated care were unrealistic patient expectations, inadequate dissemination across health workers, and poor transportation access. Health professionals, decision makers and patients believed the integrated lymphoedema care package to be scalable and sustainable. Conclusion The integrated holistic care package was found to be acceptable to patients, health professionals and decision makers. We recommend its scale-up to other endemic districts.

A qualitative process evaluation of a community conversation intervention to reduce stigma related to lower limb lymphoedema in Northern Ethiopia

“…In conclusion, even though there was a range of observed challenges, the CC intervention was found to play an important role in promoting access to integrated holistic lymphoedema care services through addressing misconceptions and reducing stigma. Apart from serving as inputs for further improving the quality of the CC implementation process, the lessons documented through this qualitative process evaluation could help researchers, development partners and policy makers to optimize the benefits of integrating CC into the primary health care system as a feasible health communication strategy in the context of stigmatizing disease conditions like lymphoedema [5,14,25,26].…”

“…In essence, this care package constituted capacity building, program management, health education, MMDP, and socio-economic rehabilitation. The piloting and scale-up of the EnDPoINT programme was conducted in selected districts of Awi zone in the North West of Ethiopia [24][25][26][27][28]. During Phase 3 of EnDPoINT, a more detailed investigation into stigma reduction was enabled through the embedded IMPRESS ('Improving access to integrated Morbidity management and disability Prevention Services through Stigma reduction for people with lower limb lymphoedema in Ethiopia') project.…”