Abstract
The aim was to evaluate whether an intervention including education about the role of inherited susceptibility in development of a tropical lymphedema increased shoe-wearing among high risk children without increasing community stigma. A cluster randomized intervention trial was conducted with caregivers in affected and unaffected households. Six communities in Ethiopia were randomly assigned to: (1) usual care health education (UC), (2) household-based skills training and community awareness campaign (HB), or (3) HB plus a genetics education module (GE). Recruitment for the six month intervention began in February 2012 and study activities were completed May 2013. Primary outcomes 3 and 12 months were direct observation of shoe use by an index child (age 3-6), experienced stigma among affected participants (n=585), and unaffected participants’ (n=1,124) reports of enacted stigma. Among affected households, neither intervention arm increased shoe wearing or reduced stigma relative to the usual care condition at 3 or 12 months (shoe wearing 3-month difference (95% CI): HB-UC 0.15 (-0.09, 0.40); GE-UC 0.07 (-0.18, 0.32); 12- month: HB-UC -0.24 (-0.34, -0.14); GE-UC -0.18 (-0.28, -0.08); stigma 3-month: HB-UC 0.42 ( -0.63, 1.47); GE-UC 0.62 (-0.43, 1.66); 12-month: HB-UC 0.49 (-0.02, 0.99) ; GE-UC 0.12 ( -0.38, 0.62)). Among unaffected households, differences by intervention arms were marginally significant (p<0.09) with the GE and HB arms showing the largest baseline to 12 month decreases in enacted stigma: HB-UC -0.25 (-0.64, 0.15) ; GE-UC -0.45 (-0.84, -0.05). Improved understanding of disease heritability showed greatest benefit for unaffected households.
Key words: intervention, genetics, shoe wearing, neglected tropical disease