Socioeconomic profile of people affected by skin neglected tropical diseases in the communes of Zagnanado and Allada, Benin: a mixed-methods cross-sectional study

This mixed-methods study in Benin reveals that skin neglected tropical diseases disproportionately affect impoverished rural populations, with care-seeking hindered by commune-specific financial and infrastructural barriers as well as a critical "nosological dissociation" between biomedical diagnoses and local cultural interpretations that necessitates targeted, context-specific interventions and collaboration with traditional practitioners.

The Gist

Imagine two neighboring villages in Benin, West Africa: Zagnanado (deep in the countryside) and Allada (closer to the city). In both places, people are suffering from a group of painful, often disfiguring skin diseases known as "Neglected Tropical Diseases" (NTDs), such as Buruli ulcer, leprosy, and severe scabies.

This study is like a deep-dive investigation into the lives of the people fighting these diseases. The researchers didn't just count how many people were sick; they asked, "Who are these people, why are they sick, and why aren't they getting help?"

Here is the story of their findings, broken down into simple concepts:

1. The People: A Struggle for Survival

The people affected are mostly poor, rural farmers, fishers, and livestock keepers.

• The Analogy: Think of their daily lives as walking through a minefield. They work in wet, muddy environments (swamps, rice paddies, rivers) where the bacteria causing these diseases thrive. Every time they use a hoe, a machete, or their hands to fish, they risk a small cut that lets the infection in.
• The Reality: Most of these people have little to no formal education and rely on unstable, day-to-day income. They are like a house built on a shaky foundation; one bad harvest or one medical bill can collapse their whole world.

2. The Big Disconnect: "The Name Game"

This is the most surprising discovery. Even though there are special hospitals right in their towns dedicated to curing Buruli ulcer, only 7 out of 100 people could actually name the disease.

• The Analogy: Imagine a doctor trying to treat a patient for "Influenza," but the patient only knows it as "The Winter Chill" or "The Bad Cold." The doctor keeps shouting "Influenza!" while the patient is confused and thinks they are talking about something else entirely.
• The Reality: The medical term is "Buruli ulcer," but locals call it by different names depending on what the sore looks like (e.g., "the wound that won't heal" or "the tomato spot"). Because the medical name and the local name don't match, people don't realize they have a specific disease that has a cure. They think it's just a bad cut or a curse.

3. Two Different Kinds of Trouble

While both villages are poor, the reasons people can't get help are different, like two different types of traffic jams.

• In Allada (The "Too Expensive" Jam): The hospital is relatively close, but people are stuck because they can't afford the ride or the ticket. It's like having a car that works, but no gas money. The biggest barrier here is the cost of treatment.
• In Zagnanado (The "Too Far" Jam): The people here are stuck because the hospital is a world away. It's like having a free ticket to a concert, but the venue is in another country and you have no way to get there. The biggest barriers here are the lack of roads, the distance, and the fact that there simply aren't enough clinics or doctors nearby.

4. The "Magic" Factor

A significant number of people (about 1 in 5) believe these skin diseases are caused by witchcraft, curses, or divine punishment, not germs.

• The Analogy: If you have a flat tire, you might think it's a "bad omen" from a spirit rather than a nail in the road. Because of this belief, people often go to a traditional healer (a "bɔkɔnɔ") first to cast a spell or remove the curse, rather than going to the hospital for antibiotics. This delays treatment until the wound is severe.
• The Twist: The study found that almost 80% of people actually want the government to work with traditional healers, not against them. They see the healers as the first line of defense and want them to be partners in sending people to the hospital.

5. The "One Hole" Problem

The study also looked at where people live. Many families use the same hole for everything: bathing, washing clothes, cooking, and even going to the bathroom.

• The Analogy: Imagine a kitchen sink that is also the toilet and the bathtub. It's a recipe for spreading germs.
• The Reality: This lack of clean water and proper sanitation keeps the diseases spreading. People get sick, wash their wounds in the same dirty water they drink, and get re-infected.

The Bottom Line: What Needs to Happen?

The researchers say you can't use a "one-size-fits-all" solution.

• For Allada: You need to help people with money (so they can afford to travel and pay for care).
• For Zagnanado: You need to build roads and clinics (so care is actually reachable).
• For Everyone: You need to change the language. Instead of shouting medical terms nobody understands, health workers need to speak the local language, using the local names for the sores to explain that they are treatable diseases, not curses.

In short: The people are trapped in a cycle of poverty, distance, and misunderstanding. To break the cycle, the solution isn't just more medicine; it's better roads, financial help, and a conversation that respects local beliefs while bridging the gap to modern science.

Technical Summary

Technical Summary: Socioeconomic Profile of People Affected by Skin NTDs in Zagnanado and Allada, Benin

Problem Statement
Skin neglected tropical diseases (skin NTDs), including Buruli ulcer, leprosy, lymphatic filariasis, and scabies, disproportionately affect impoverished rural communities in sub-Saharan Africa. In Benin, despite two decades of national control programs (PNLLUB, PI-PSILUB), these diseases persist. The persistence is attributed to a lack of locally grounded socioeconomic evidence regarding the affected populations. Current control efforts struggle with limited access to health infrastructure, entrenched traditional beliefs, and frequent recourse to traditional medicine, which hinder early detection and clinical management. There is a documented gap in commune-level epidemiological data necessary to design equitable control programs.

Methodology
The study employed an explanatory sequential mixed-methods cross-sectional design, adhering to STROBE guidelines, conducted between November 2024 and May 2025 in two endemic communes: Zagnanado (Zou department, remote rural) and Allada (Atlantique department, peri-urban).

• Quantitative Component: A weighted proportional random sampling strategy enrolled 403 participants (rights-holders with clinical signs and their household relatives) from the catchment areas of two Buruli ulcer screening and treatment centres (CDTUBs). The effective participation rate was 99.8%. Data were collected via structured questionnaires on Android devices (ODK Collect) covering sociodemographics, economic activities, income sources, and access to care.
• Qualitative Component: 60 purposively selected semi-structured interviews were conducted with rights-holders, duty-bearers (health providers, traditional healers), and obligation-bearers (local authorities). Interviews were conducted in Fongbé and French, audio-recorded, and transcribed.
• Analysis: Quantitative data were analyzed using IBM SPSS Statistics 29.0, utilizing descriptive statistics, Pearson chi-squared tests for intercommunal disparities, and crude odds ratios (Woolf's method) for bivariate associations. Qualitative data underwent reflexive thematic analysis (Braun and Clarke, 2006), with triangulation against quantitative results and direct observations.
• Ethics: The study received approval from the National Ethics Committee for Health Research of Benin (CNERS 002/2025). Informed consent was obtained from all adults and guardians of minors.

Key Results

• Sociodemographic Profile: The sample was balanced by sex (50.6% women) and dominated by adults aged 25–49 (55.1%). The majority were engaged in farming, livestock-rearing, or fishing (43.7%), lived in rural areas (50.1%), and had low educational attainment (38.5% with no formal schooling). The Fon ethnic group comprised 77.4% of the sample.
• Barriers to Care: Treatment cost was the leading barrier overall (84.6%), with no significant difference between communes. However, marked intercommunal disparities existed in structural barriers:
  • Geographical Access: Significantly higher in Zagnanado (66.7%) compared to Allada (26.4%).
  • Inadequate Infrastructure: Significantly higher in Zagnanado (53.0%) compared to Allada (10.0%).
  • Residents of Zagnanado were 5.59 times more likely to report limited geographical access and 10.15 times more likely to report inadequate infrastructure compared to Allada residents.
• Nosological Dissociation: A critical finding was the extremely low spontaneous recognition of Buruli ulcer (7.2%), despite the presence of specialized treatment centres. Participants recognized local Fongbé terms (e.g., akpa djɔmakou, timantibo) but did not connect them to the biomedical entity "Buruli ulcer." This "nosological dissociation" suggests current awareness campaigns using biomedical nomenclature fail to resonate with local illness concepts.
• Perceived Causes and Beliefs: While most attributed disease to hygiene (75.9%) or environmental factors, 22.8% attributed skin diseases to sociocultural factors such as witchcraft, divine punishment, or curses. Qualitative data revealed that these beliefs often drive initial recourse to traditional healers, delaying biomedical consultation.
• Environmental Risks: The study highlighted the "One Health" dimension, noting that populations engaged in aquatic livelihoods (fishing, raffia collection in swamps) face sustained exposure to hydromorphic environments conducive to Mycobacterium ulcerans. The practice of "tout dans le même trou" (using a single water source for all domestic activities including defecation) was widely documented.
• Proposed Strategies: Participants' preferred control strategies differed by commune. Allada prioritized financial support for care access (62.3%), whereas Zagnanado prioritized improved health infrastructure (39.3%) and workforce strengthening (32.2%). Integration of traditional medicine into control programs received strong overall support (78.9%).

Significance and Claims
The paper claims to provide novel, commune-level evidence on the socioeconomic and environmental determinants sustaining skin NTDs in Benin. Its primary contributions include:

1. Differentiated Structural Analysis: The study distinguishes between universal financial barriers and structural barriers that vary significantly by location. It argues that a "one-size-fits-all" approach is insufficient; Allada requires financial protection mechanisms, while Zagnanado requires infrastructure investment and health workforce deployment.
2. Conceptualizing Nosological Dissociation: The authors introduce the concept of "nosological dissociation" to describe the perceptual gap between biomedical disease entities and local vernacular terms. They claim this is a critical, under-recognized barrier that explains why awareness campaigns fail to connect with local realities, leading to delayed care-seeking.
3. Strategic Integration of Traditional Medicine: Rather than viewing traditional beliefs solely as obstacles, the paper argues for structured collaboration with traditional healers, who are often the first port of call for affected families. The high endorsement (78.9%) of integrating traditional medicine suggests this is a viable asset for improving referral pathways and adherence.
4. Policy Relevance: The findings are presented as essential for informing the WHO NTD Roadmap 2021–2030 and the Beninese National Programme for the Control of Leprosy and Buruli Ulcer (PNLLUB). The authors assert that breaking the disease-poverty cycle requires holistic interventions that combine financial protection, infrastructure strengthening, culturally adapted communication (bridging vernacular and biomedical terms), and political investment in CDTUB capacity.

The authors maintain modesty regarding causal inference due to the cross-sectional design and note limitations in generalizability to other Beninese communes with different profiles. They emphasize that the observed disparities are objective differences in service landscapes rather than mere perceptions.