The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia

Background Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. Methodology The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. Results A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants. Conclusion This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty.
Author summary Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looked at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life in Northwest Ethiopia. The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted with persons affected and their family members. A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on family quality of life, resulting in: participation restrictions, reduced productivity, marginalisation, discrimination, divorce, difficulties finding a spouse, school dropouts, mental health problems and poverty. Both persons affected and their family members were impacted. Many problems reported related to impairments, stigma and poverty. The results of this study can be used to inform leprosy, lymphatic filariasis and podoconiosis treatment and after care programmes.