DOI: 10.5064/f6qxn205
title: Data for: Synthesis of Findings from the Literature and a Qualitative Research Study on the Impacts of Gender, Disability, and Ethnicity in Neglected Tropical Diseases Programs

description: &lt;h3&gt;Project Overview&lt;/h3&gt;&lt;p&gt;The United States Agency for International Development’s (USAID) Act to End Neglected Tropical Diseases (NTDs) | West (Act | West) program is a five-year USAID-funded cooperative agreement that seeks to eliminate or control five NTDs (lymphatic filariasis, trachoma, onchocerciasis, schistosomiasis, soil-transmitted helminths) in 11 West African countries: Benin, Burkina Faso, Cameroon, Ghana, Guinea, Ivory Coast, Mali, Niger, Senegal, Sierra Leona and Togo. The program – managed as a consortium of partners, with FHI 360 as the overall lead – supports national governments to roll out mass drug administration (MDA) campaigns to treat all eligible individuals in an affected community with drugs that both treat the disease in those who are infected, as well as protect those who aren’t from future infection. These campaigns are primarily carried out by community drug distributors (CDDs) who are trained by government health teams to raise awareness of NTDs and the drugs used to treat them, as well as ensure all eligible individuals participate in the MDA campaigns.&lt;/p&gt;&lt;p&gt;As a way to ensure the program is equitably addressing the needs of men, women, boys and girls with NTD control and elimination activities, Act | West conducted a gender and social inclusion (GESI) analysis study in 2019 to determine how NTDs differentially impact various populations and how gender and social norms and power differentials between men and women might impact results, with a view to informing future NTD programming, integrating elements to explicitly advance gender equality and social inclusion. The GESI analysis took an intersectional approach, looking not just at how gender norms and roles impact various components of NTD programming, but also looking at ethnicity, geographic context, urban vs. rural, and disability.&lt;/p&gt;&lt;p&gt;The objectives of the gender and social inclusion analysis were to identify the following:&lt;ul&gt;&lt;li&gt;How neglected tropical diseases (NTDs) might differentially impact women, men, and school-aged children 6-15 years old, recognizing intersectionality such as disability, ethnicity, etc.;&lt;/li&gt;&lt;li&gt;How gender norms, roles, and power dynamics, including social exclusion of people with disabilities, might affect the attainment of program results; and&lt;/li&gt;&lt;li&gt;How program activities might advance gender equality and social inclusion and promote sustainable health outcomes in the context of NTD control and elimination programming.&lt;/li&gt;&lt;/ul&gt;&lt;/p&gt;
description: &lt;h3&gt;Data Collection Overview&lt;/h3&gt;&lt;p&gt;For country-level data collection, we purposively selected three countries (Côte d’Ivoire, Sierra Leone, and Ghana) to be as representative as possible of the 11 West African Act to End NTDs | West program countries, including demographic data such as religious and ethnic make-up. We also selected countries based on percentage of women trained as CDDs, types of MDA present, length of NTD program implementation, and security considerations.&lt;/p&gt;&lt;p&gt;The key informant interviews and focus group discussions totaled 477 individuals across the three study countries. Seventeen KIIs were conducted across the three countries, including with in-country Act to End NTDs | West program staff, government officials involved in NTD programming, members of international organizations involved in NTD programming, including disabled persons groups, and members of local community-based or civil society organizations involved in NTD programming.&lt;/p&gt;&lt;p&gt;Twenty-one FGDs were conducted in each country. Each FGD consisted of 6−8 participants from each of the following groups:&lt;ul&gt;&lt;li&gt;3 groups of community leaders (mixed male and female)&lt;/li&gt;&lt;li&gt;6 groups of community drug distributors (CDDs) (3 females and 3 males in each country)&lt;/li&gt;&lt;li&gt;3 groups of health providers (mixed male and female)&lt;/li&gt;&lt;li&gt;3 groups of mothers of school aged children (6-15 years old)&lt;/li&gt;&lt;li&gt;3 groups of fathers of school aged children (6-15 years old)&lt;/li&gt;&lt;li&gt;3 groups of grandmothers of school-age children (6-15 years old)&lt;/li&gt;&lt;/ul&gt;&lt;/p&gt;&lt;p&gt;These participant groups were selected based on their role in decision-making and participation in both community-based and school-based MDA campaigns.&lt;/p&gt;&lt;p&gt;Prior to fieldwork, research team members underwent training on best practices in human subject research ethics, gender analysis data collection, data entry and cleaning, and qualitative analysis prior to data collection. All individuals who participated were provided informed consent prior to the start of the interview, and written consent was obtained from all participants who were able to sign their name. Verbal consent was obtained for any participants who were not able to sign their name. The protocol for this study, data collection instruments, and consent forms were approved by FHI 360’s Protection of Human Subjects Committee and local research ethics boards in each of the three study countries (Comite National d’Ethique des Sciences de la Vie et de la Sante in Côte d’Ivoire; Ghana Health Service Ethics Review Committee on Research Involving Human Subjects in Ghana; and the Office of the Sierra Leone Ethics and Scientific Review Committee in Sierra Leone).&lt;/p&gt;
description: &lt;h3&gt;Data Processing and Analysis&lt;/h3&gt;&lt;p&gt;Data were transcribed into English from audio recordings, and triangulated using notes, into Microsoft Word. Microsoft Excel was used for efficient analysis, and the transcripts were coded according to the domains of gender analysis from USAID’s ADS Chapter 205: Integrating Gender Equality and Female Empowerment in USAID’s Program Cycle [2] adapted to the context of NTD programming. FGDs were analyzed collectively by population group, and KIIs were analyzed collectively as one group.&lt;/p&gt;&lt;p&gt;A codebook was developed by the Principal Investigator and co-investigators in an iterative process. The study team used the process of circular coding, including information collected from literature and raw data, using grounded theory. No double-coding was done.&lt;/p&gt;&lt;p&gt;Data were coded and analyzed according to the domains of gender / gender and social inclusion analysis. The following domains were applied: policies and regulations; patterns of power and decision making; gender-related health and social impacts of NTDs; access to information about NTDs and MDAs; access to and acceptability of MDAs; and cultural norms and beliefs impacting the selection and roles of male and female CDDs.&lt;/p&gt;
description: &lt;h3&gt;Selection and Organization of Shared Data&lt;/h3&gt;&lt;p&gt;The data consist of 22 de-identified transcript summaries with data from Ghana, and two matrices in tabular format with coded qualitative data from Cote d’Ivoire and Sierra Leone. The documentation for this project consists of a codebook with theme definitions, the five informed consent forms used, this data narrative, and an administrative README file.&lt;/p&gt;
description: Update Notes for Version 2.0
New data files were added: twenty-two de-identified transcript summaries from Ghana. 
The Data Narrative, README file and the Description metadata fields were updated to reflect the additional materials; the Geographic Coverage metadata field was updated to reflect the additional data collection site.