An exploration of family quality of life in persons with leprosy-, lymphatic filariasis– and podoconiosis-related disabilities and their family members in Ethiopia

Leprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life.

A cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25–125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0–63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0–80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis.

 A total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between the FQOL and SALSA scores.

Family quality of life is an important area to address because neglected tropical diseases often affect the whole family. It is therefore important in order to provide appropriate support for persons affected and their family members. Efforts to improve the quality of life of families in which a family member is affected by leprosy, podoconiosis or LF should give priority to women and families with a smaller family size.

Anna van 't Noordende, Moges Wubie Aycheh, Alice Schippers
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Transactions of The Royal Society of Tropical Medicine and Hygiene, 2020, 0: 1-10 (online publication)