TY - JOUR KW - Uganda KW - Sleeping sickness KW - Rivers KW - Negelected Tropical Diseases KW - Memory KW - Human African Trypanosomiasis KW - Elderly KW - Blood AU - Kovacic V AU - Tirados I AU - Esterhuizen J AU - Mangwiro CT N AU - Lehane M AU - Torr S AU - Smith H AB -

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.

BT - PLoS neglected tropical diseases C1 -

http://www.ncbi.nlm.nih.gov/pubmed/27253367?dopt=Abstract

DO - 10.1371/journal.pntd.0004745 IS - 6 J2 - PLoS Negl Trop Dis LA - eng N2 -

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.

PY - 2016 EP - e0004745 T2 - PLoS neglected tropical diseases TI - We remember… Elders' memories and perceptions of sleeping sickness control interventions in West Nile, Uganda. UR - http://journals.plos.org/plosntds/article/asset?id=10.1371%2Fjournal.pntd.0004745.PDF VL - 10 SN - 1935-2735 ER -