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We remember… Elders’ memories and perceptions of sleeping sickness control interventions in West Nile, Uganda

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Murilla, Grace Adira, Kovacic, Vanja, Tirados, Inaki, Esterhuizen, Johan, Mangwiro, Clement T. N., Lehane, Michael J., Torr, Stephen J. and Smith, Helen (2016) We remember… Elders’ memories and perceptions of sleeping sickness control interventions in West Nile, Uganda. PLoS Neglected Tropical Diseases, 10 (6). pp. 1-18. e0004745. doi:10.1371/journal.pntd.0004745 ISSN 1935-2727.

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Official URL: http://dx.doi.org/10.1371/journal.pntd.0004745

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Abstract

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.

Item Type: Journal Article
Subjects: D History General and Old World > DT Africa
R Medicine > RC Internal medicine
Divisions: Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Epidemic encephalitis -- Prevention -- Úganda, Epidemic encephalitis -- Diagnosis -- Úganda, Lugbara (African people) -- Health aspects -- Interviews, Oral history, Psychic trauma, Disease management -- History -- Úganda, Imperialism
Journal or Publication Title: PLoS Neglected Tropical Diseases
Publisher: Public Library of Science
ISSN: 1935-2727
Official Date: 2 June 2016
Dates:
DateEvent
2 June 2016Published
5 May 2016Accepted
19 January 2016Submitted
Volume: 10
Number: 6
Number of Pages: 18
Page Range: pp. 1-18
Article Number: e0004745
DOI: 10.1371/journal.pntd.0004745
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Open Access (Creative Commons)
Date of first compliant deposit: 4 August 2016
Date of first compliant Open Access: 4 August 2016
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
202945-101Bill and Melinda Gates Foundationhttp://dx.doi.org/10.13039/100000865

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