The use of focus groups to develop a culturally relevant quality of life tool for lymphatic filariasis in Bangladesh

PURPOSE: The purpose of this study was to conduct focus groups to operationalise the construct of quality of life (QOL) for people living with lymphatic filariasis (LF) in Bangladesh to develop culturally valid items for a Bangladeshi LF QOL tool. METHODS: Ten focus groups were conducted with a stratified purposeful sample (n = 60) of LF patients (3 focus groups, n = 17), doctors (1 focus group, n = 5), nurses (1 focus group, n = 6) and other hospital staff (1 focus group, n = 5), community leaders (2 focus groups, n = 14), community volunteer health workers (1 focus group, n = 5) and Bangladeshi LF researchers and planners (1 focus group, n = 8). Focus group methodology was informed by local culture in consultation with cultural mentors and local advisors, often going against standard focus group procedures. Data were collected through note taking, audio taping, transcripts, observational notes and a reflection diary. Open coding of transcript data was completed until data saturation was achieved. RESULTS: Forty-three constructs were identified through the focus groups that had not previously been identified in the literature, including constructs relating to environmental supports and barriers, activities, participation and psychological impacts. There were marked differences between the impacts reported by different groups, highlighting the need for a comprehensive purposive sample. In particular, contributions from participants who would not traditionally be viewed as “experts” were vital. CONCLUSIONS: The use of focus groups strongly contributed to the operationalisation of the concept of QOL in Bangladesh for people living with LF. Use of literature review or expert opinion alone would have missed vital constructs.