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.

Cognitive testing of the WHOQOL-BREF Bangladesh tool in a northern rural Bangladeshi population with lymphatic filariasis.

PURPOSE: The purpose of this study was to test the cultural suitability of the WHOQOL-BREF Bangladesh for a rural village population in Bangladesh. METHODS: Participants (n = 35) were purposefully stratified for age, gender, education level and location from the Nilphamari district in northern rural Bangladesh. Cognitive interviews were conducted via an emergent probing method to identify issues with language and constructs within the tool. Data were collected through note taking and recordings of interviews. A coding framework was used to identify key issues with questions, which were analysed using SPSS version 19 and Chi-square analysis using a Fisher's exact test to determine statistically significant variances within the sample. RESULTS: Twenty-two of the 26 questions in the tool were found to be problematic. The majority of problems with questions related to wording and conceptual difficulties. The majority of participants found the tool to be overly formal. Issues with translation appeared to affect the interpretation of a number of questions, and some concepts in the tool were found to be irrelevant in a village setting. There were statistically significant differences between those of different educational backgrounds and between genders. CONCLUSIONS: The study found that the WHOQOL-BREF Bangladesh as it currently stands is not culturally or linguistically suitable for use within a rural northern Bangladeshi population.

Disability measurement for lymphatic filariasis: a review of generic tools used within morbidity management programs.

Lymphatic filariasis (LF)-related disability affects 40 million people globally, making LF the leading cause of physical disability in the world. Despite this, there is limited research into how the impacts of LF-related disability are best measured. This article identifies the tools currently being used to measure LF-related disability and reviews their applicability against the known impacts of LF. The findings from the review show that the generic disability tools currently used by LF programs fail to measure the majority of known impacts of LF-related disability. The findings from the review support the development of an LF-specific disability measurement tool and raise doubt about the suitability of generic disability tools to assess disability related to neglected tropical diseases (NTDs) globally.

The emerging story of disability associated with lymphatic filariasis: a critical review.

Globally, 40 million people live with the chronic effects of lymphatic filariasis (LF), making it the second leading cause of disability in the world. Despite this, there is limited research into the experiences of people living with the disease. This review summarises the research on the experiences of people living with LF disability. The review highlights the widespread social stigma and oppressive psychological issues that face most people living with LF-related disability. Physical manifestations of LF make daily activities and participation in community life difficult. The findings confirm the need for the Global Programme to Eliminate Lymphatic Filariasis (GPELF) to support morbidity management activities that address the complex biopsychosocial issues that people living with LF-related disability face.