02478nas a2200301 4500000000100000008004100001653001100042653002200053653001100075653003300086653001100119653003400130653001200164653001000176100001400186700001400200700001800214700001800232700001300250700001100263700001200274245011700286856009000403300001300493490000700506520164900513022001402162 2016 d10aUganda10aSleeping sickness10aRivers10aNegelected Tropical Diseases10aMemory10aHuman African Trypanosomiasis10aElderly10aBlood1 aKovacic V1 aTirados I1 aEsterhuizen J1 aMangwiro CT N1 aLehane M1 aTorr S1 aSmith H00aWe remember… Elders' memories and perceptions of sleeping sickness control interventions in West Nile, Uganda. uhttp://journals.plos.org/plosntds/article/asset?id=10.1371%2Fjournal.pntd.0004745.PDF ae00047450 v103 a

The traditional role of African elders and their connection with the community make them important stakeholders in community-based disease control programmes. We explored elders' memories related to interventions against sleeping sickness to assess whether or not past interventions created any trauma which might hamper future control operations. Using a qualitative research framework, we conducted and analysed twenty-four in-depth interviews with Lugbara elders from north-western Uganda. Participants were selected from the villages inside and outside known historical sleeping sickness foci. Elders' memories ranged from examinations of lymph nodes conducted in colonial times to more recent active screening and treatment campaigns. Some negative memories dating from the 1990s were associated with diagnostic procedures, treatment duration and treatment side effects, and were combined with memories of negative impacts related to sleeping sickness epidemics particularly in HAT foci. More positive observations from the recent treatment campaigns were reported, especially improvements in treatment. Sleeping sickness interventions in our research area did not create any permanent traumatic memories, but memories remained flexible and open to change. This study however identified that details related to medical procedures can remain captured in a community's collective memory for decades. We recommend more emphasis on communication between disease control programme planners and communities using detailed and transparent information distribution, which is not one directional but rather a dialogue between both parties.

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