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Prevalence and sociocultural beliefs and practices of Epilepsy in Nairobi urban informal settlements: Epilepsy Pathway Innovation in Africa (EPInA), N/A

KENYA, 2021 - 2022
Health and Well-Being (HaW)
Prof. Charlse Newton
Last modified April 10, 2026 Page views 36 Documentation in PDF Metadata DDI/XML JSON

Identification

IDNO
DDI-KEN-APHRC-EPInA-2021-V1.0
Title
Prevalence and sociocultural beliefs and practices of Epilepsy in Nairobi urban informal settlements: Epilepsy Pathway Innovation in Africa (EPInA), N/A
Subtitle
N/A
Country
Name Country code
KENYA KEN
Abstract
Epilepsy is a common and serious neurological condition in sub-Saharan African countries. However, the true burden of epilepsy and impact on populations are not known because of under-reporting due to social stigma and a weak capacity to diagnose epilepsy by primary health care workers. There is a clear lack of data on epilepsy in urban informal settlements in Kenya. The study aims to estimate the prevalence of epilepsy and explore how sociocultural beliefs and stigma in urban-poor communities influence epilepsy diagnostic gaps to inform approaches for improving care for epilepsy in Nairobi urban informal settlements. The study will be nested in the APHRC- led Nairobi urban demographic surveillance system to screen the entire population of approximately 87,000 residents for epilepsy using a two-stage process. In stage 1, probable cases of epilepsy will be identified by field workers using a standardized questionnaire administered at the household level. In stage 2, all probable cases will be referred to designated clinics within the study area for further screening by primary health workers (PHWs) using a diagnostic mobile app and the same participants will be concurrently assessed by a neurologist/physician. Ethnographic research will be conducted to understand beliefs, practices and stigma. This is expected to shrink treatment gaps for epilepsy in urban slums through empowering PHWs and traditional healers. Interactions with the communities will achieve an enduring reduction in stigma associated with epilepsy.

Version

Version Date
2023-12-05
Version Notes
N/A

Coverage

Geographic Coverage
This survey covered the Nairobi urban informal settlements
Unit of Analysis
Individual persons living within the Nairobi Urban Demographic Surveillance System.
Universe
All residents of the Nairobi Urban Health Demographic Surveillance System (NUHDSS).

Producers and sponsors

Authoring entity/Primary investigators
Agency Name Affiliation
Prof. Charlse Newton KEMRI-CGMRC
Producers
Name Affiliation Role
Prof. Charlse Newton KEMRI-CGMRC Co-principle Investigator
Dr. Gershim Asiki African Population and Health Research Center Co-principle Investigator
Dr. Frederick Wekesah African Population and Health Research Center Investigator
Dr. Damazo Kadengye African Population and Health Research Center Investigator
Dr. Daniel Mwanga African Population and Health Research Center Investigator
Dr. Peter Otieno African Population and Health Research Center Investigator
Dr. Mercy Atieno KEMRI-CGMRC Investigator
Prof. Sloane Mahone University of Oxford Investigator
Prof. Arjune Sen University of Oxford Investigator
Gilbert Katana KEMRI-CGMRC Investigator
Maria Mumbo KEMRI-CGMRC Investigator
Collins Kipkoech KEMRI-CGMRC Investigator
Mary Bitta KEMRI-CGMRC Investigator
Joan Kinuthia African Population and Health Research Center Investigator
Frank Ouma African Population and Health Research Center Data Documentation Specialist
Funding Agency/Sponsor
Name Abbreviation Role
National Institute for Health Research – Research and Innovation for Global Health Transformation NIHR Funder
Other Identifications/Acknowledgments
Name Affiliation Role
Daniel Mwanga African Population and Health Research Center Data Analyst
Joan Kinuthia African Population and Health Research Center Research Officer
Frank Ouma African Population and Health Research Center Data documentation specialist
Bonface Ingumba African Population and Health Research Center Data Governance Expert

Sampling

Sampling Procedure
No sampling method employed. The study conducted a census of the the entire population within the NUHDSS.
Deviations from the Sample Design
N/A
Response Rate
100%
Weighting
N/A

Data Collection

Dates of Data Collection (YYYY/MM/DD)
Start date End date
2021-09-17 2022-12-22
Mode of data collection
Face-to-face [f2f]
Supervision
Field supervision was done in two ways;on daily basis by the team leaders and the field supervisor. Data quality checks was done on a daily basis by the team leaders before data submission. A weekly review of the field activities and overall data management was conducted by the senior management team which entailed the Research Officer and the associate research scientist. Project reports were reported on a weekly basis.
Type of Research Instrument
Informed consent, Questionnaire, both in english and swahili languages; Demographics and Background Information, History of convulsive seizure, History of non-convulsive seizure, Focal seizures without impaired awareness or simple partial seizures, Focal seizures with impaired awareness or complex partial seizures, Absence seizures or absences, Drop attacks, Nature of the history of convulsive seizure

Data Processing

Cleaning Operations
Survey CTO
Team leaders conducted quality checks of the data before submission.
Other Processing
N/A

Data Appraisal

Estimates of Sampling Error
N/A

Data access

Contact
Name Email URI
APHRC datarequests@aphrc.org aphrc.org
Conditions
APHRC data access condition.
All non-APHRC staff seeking to use data generated at the Center must obtain written approval to use the data from the Director of Research. This form is developed to assess applications for data use and facilitate responsible sharing of data with external partners/collaborators/researchers. By entering into this agreement, the undersigned agrees to use these data only for the purpose for which they were obtained and to abide by the conditions outlined below:

1. Data Ownership: The data remain the property of APHRC; any unauthorized reproduction and sharing of the data is strictly prohibited. The user will, therefore, not release nor permit others to use or release the data to any other person without the written authorization from the Center.

2. Purpose: The provided data must be used for the purpose specified in the Data Request Form; any other use not specified in the form must receive additional or separate authorization.

3. Respondent Identifiers: The Center is committed to protecting the identity of the respondents who provide information in its research. All analytical data sets (both qualitative and quantitative) released by the Data Unit MUST are stripped of respondent identifiers to protect the identity of the respondents. By accepting to use APHRC data, the user is pledging that he/she will not, under any circumstance, regenerate the identifiers or permit others to use the data to learn the identity of any individual, household or community included in any data set.

4. Confidentiality pledge: The user will not use nor permit others to use the data to report any information in the data sets that could identify, directly or by inference, individuals or households.

5. Reporting of errors or inconsistencies: The user will promptly notify the Head of the Statistics and Survey Unit any errors discovered in the data as soon as the errors are discovered.

6. Publications resulting from APHRC data: The Center requires external collaborators to work with APHRC staff on all publications resulting from its data. In order to facilitate this, lead authors should send a detailed concept note of the paper (including the background, rationale, data, analytical methods, and preliminary findings) to the Principle Investigator (or Theme Leader) for the project (with a copy to the Director of Research), who will circulate the abstract to concerned researchers for possible expression of interest in participating in the publication as co-authors. Any exception to the involvement of APHRC staff should be approved by the Director of Research, APHRC.

7. Security: The user will take responsibility for the security of the data by ensuring that the data are used and stored in a secure environment where access is password protected. This will ensure that non-authorized people should not have access to the data.

8. Loss of privilege to use data: In the event that APHRC determines that the data user is in violation of the conditions for using the data, or if the user wishes to cancel this agreement, the user will destroy the data files provided to him/her. APHRC retains the right to revoke this agreement or informs publishers to withhold publication of any work based wholly or in part on its data if the conditions for using the data are violated.

9. Acknowledgement: Any work/reports from this data must acknowledge APHRC as the source of these data. For example, the suggested acknowledgement for NUHDSS data is:

"This research uses livelihoods data collected under the longitudinal Nairobi Urban Health and Demographic Surveillance System (NUHDSS) since 2006. The NUHDSS is carried out by the African Population and Health Research Center in two slums settlements (Korogocho and Viwandani) in Nairobi City."

Additionally all funders, the study communities that provided the data, and staff who collected and analyzed or processed the data should be acknowledged.

10. Deposit of Reports/Papers: The user should submit electronic and paper copies of all publications generated using APHRC data to the Policy Engagement and Communications Department, with copies to the Director of Research.

11. Change of contact details: The user will promptly inform the Director of Research of any change in your personal details as contained on this data request form.
Citation requirement
Use of the dataset must be acknowledged using a citation which would include:
- the Identification of the Primary Investigator
- the title of the survey (including country, acronym and year of implementation)
- the survey reference number
- the source and date of download

Metadata production

Document ID
DDI-KEN-APHRC-EPInA-2021-V1.0
Producers
Name Abbreviation Role
African Population and Health Research Center APHRC Documentation of DDI
Date of Production
2023-12-05
Document version
Version 1.0