Odoi, Paskari and Tukahebwa, Edridah M and Vennervald, Birgitte J and Wilson, Shona and Neema, Stella
(2024).
Adult Perceptions of Schistosomiasis, Mass Drug Administration and Praziquantel - An Ethnographic Study, 2019.
[Data Collection]. Colchester, Essex:
UK Data Service.
10.5255/UKDA-SN-857010
Schistosomiasis remains a major public health problem in many developing countries, Uganda inclusive. It affects the poorest people, living in remote, marginal and rural areas, and causes life-long disability, disfigurement, reduced economic productivity and social stigma. In Hoima District, communities on the shores of Lake Albert retain high infection intensities levels. This is despite concerted efforts to provide annual community wide preventative chemotherapy through mass drug administration (MDA) programmes, with the latest reported coverage rates for districts with Lake Albert shores being above the WHO target of 75% of those eligible for treatment (currently school aged children and adults). Failure to gain control of infection in primary school children can result in the development of persistent morbidity that can be life threatening in adulthood. Without improved intervention we will fail to meet the Sustainable Development Goal 3 aim of promoting well being for all. The data pertains to an anthropology work package within the overall FibroScHot research programme, at the core of which is a phase IV clinical trial to optimise treatment frequency amongst school-aged children living in Lake Albert schistosomiasis transmission hotspots. The anthropology studies looked at perceptions, knowledge and practices related to schistosome transmission, disease, treatment and adherence to mass drug administration.
Data description (abstract)
Elimination of schistosomiasis as a public health problem in all endemic countries is the international goal stated in the WHO Neglected Tropical Disease Roadmap for 2021–2030. The primary method of schistosomiasis control for meeting this goal is preventative chemotherapy programmes that utilise community or school based Mass Drug Administration of the drug praziquantel. Uganda was at the forefront of preventative control programme implementation but within the country hotspots of schistosomiasis infection remain. An overemphasis on regular treatment, without comprehensively addressing factors that result in poor uptake of treatment in these high-risk populations is likely to impact the elimination of schistosomiasis as a public health problem.
The data are the English language anonymised transcripts from an ethnographic study involving adult participants from Hoima District, Uganda - a known hotspot of schistosomiasis transmission. The aim of the study was determine the understanding and perceptions of schistosomiasis and its impact within this transmission hotspot. The study also aimed to determine the facilitating and limiting factors associated with the preventative chemotherapy control programme. The study involved focus group discussions and in-depth interviews with adult members of two communities in Hoima District and key informant interviews with stakeholders in Hoima District's control programme.
| Data creators: |
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| Sponsors: |
European and Developing Countries Clinical Trial Partnership 2 Programme
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| Grant reference: |
RIA2017NIM-1842
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| Topic classification: |
Health
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| Keywords: |
ETHNOGRAPHY, UGANDA, HOIMA (DISTRICT), ADULTS, COMMUNITY HEALTH SERVICES, ADMINISTRATION OF DRUGS, PERCEPTION
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| Project title: |
Impact of increased praziquantel frequency on childhood fibrosis in persistent schistosomiasis morbidity hotspots: FibroScHot (WP4 - Anthropology)
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| Grant holders: |
Prof Stella Neema, School of Social Sciences, Makerere University, Dr Edridah Tukahebwa, Vector Control Division, Uganda Ministry of Health, Dr Shona Wilson, Dept. of Pathology, University of Cambridge
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| Project dates: |
| From | To |
|---|
| 1 September 2018 | 31 August 2024 |
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| Date published: |
23 Jul 2024 12:26
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| Last modified: |
04 Dec 2024 09:20
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| Collection period: |
| Date from: | Date to: |
|---|
| 4 November 2019 | 13 December 2019 |
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| Geographical area: |
Hoima District, Uganda |
| Country: |
Uganda |
| Data collection method: |
Focus group discussions were conducted with community members comprising of 6 to 7 participants per group. Group categories included gender and youth/non-youth and were organised separately. A total of 14 FGDs were conducted, in which 97 people participated.
In-depth interviews were conducted with adult community members in order to understand their perceptions and lived experiences (phenomenology) and coping strategies. A total of 52 in-depth interviews were conducted. Eleven of these in-depth interviews (numbers 42-52) were purposively selected as individuals who had previously suffered from schistosomiasis (Bilharzia).
Key informant interviews were conducted with stakeholders in the control programme etiher at the district, subcounty, or lower local levels. In total 12 key informants were interviewed. Interviews and focus group discussions were conducted in English, Alur or Lunyoro. |
| Observation unit: |
Individual, Group |
| Kind of data: |
Text |
| Type of data: |
Qualitative and mixed methods data |
| Resource language: |
English (in translation) |
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| Data sourcing, processing and preparation: |
All interviews were recorded digitally and transcribed verbatim by research assistants. Transcripts were quality checked by the principal investigator. The original transcripts containing direct personal identifiers are only available to the core research team in Uganda. Transcripts were translated from the local languages (Alur, Lunyoro) into English prior to analysis and any direct personal identifiers were removed at this stage. These English language versions have undergone a further anonymisation process described below to improve protection from indirect identifiers.
Age, originally collected to the year, has been re-allocated into age ranges. In Uganda a youth is defined as 18-30 years. Youths have been allocated to 18-24 years of age and 25-30 years of age. Older age groups are in 5-year ranges until the age of 60, with all participants over 60 years of age being allocated to oldest age range.
Highest level of educational attainment was originally collected to the year completed. This has been collapsed into "primary", "secondary" and "tertiary". The allocation of primary and secondary does not indicate that this level of education was completed, only that the individual attended some years at this level. For tertiary, the type of qualification has been retained e.g. certificate, degree, post-graduate degree.
To protect community participant identities, occupations have been retained only if they are very common amongst adults in the study communities: "fisherman/woman", "fishmonger","farmer", "housewife" and "student". Other occupations have been collapsed into broader terms where possible: "business" and "health worker", when this was not possible their occupation is given as "other".
Ethnic group and religion were collected for participants of the focus group discussions. This data has been redacted. The English language transcripts have been checked for direct mention by the participants of these characteristics in relation to themselves and the text redacted where necessary. Sites of redactions within the text are indicated by [ ], with a descriptor of the reason for redaction given within the brackets.
The organisational level - District, sub-county, local - and the professional role undertaken was collected from the Key Information Interview participants. This data has been redacted. The English language transcripts have been checked for direct mention of their role by the particpants and the text redacted where necessary. Sites of redactions within the text are indicated by [ ], with a descriptor of the reason for redaction given within the brackets.
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| Rights owners: |
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| Contact: |
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| Notes on access: |
The Data Collection is available for download to users registered with the UK Data Service. All requests are subject to the permission of the data owner or his/her nominee. Please email the contact person for this data collection to request permission to access the data, explaining your reason for wanting access to the data, then contact our Access Helpdesk.
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| Publisher: |
UK Data Service
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| Last modified: |
04 Dec 2024 09:20
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