Physical and psychosocial burden of cholera

Over two-thirds of participants either had cholera themselves or knew multiple individuals who had been sick. In their narratives, most framed the outbreak almost as a physical multifront assault, employing common militaristic disease metaphors such as individuals being ‘attacked’, localities ‘ravaged’, and the region overall ‘hit really, really, really hard’ by cholera.

‘Nan [zòn sa], li fè ravaj’ [It ravaged through this area]…I have an 18-year-old son who was ‘atake’ [attacked] by the disease…Even my mother had it too, was attacked. (Female homemaker)

I would barely return from taking someone to [a health center] that I’d have to go again. You take this person and when you come back, it’s either an aunt, a cousin, or someone else. My kid or someone else. I have to go back. Even I, while I was in the fields…it hit me. (Male farmer)

Many deaths were highlighted from these ‘attacks’, especially in villages along the river banks. As participants recounted these experiences, a salient theme of suffering, loss, and helplessness emerged from their descriptions.

There’s a little locality called Vale—in a week, some 5 to 6 people died…We didn’t know what to do. (Male tailor)

People were just dropping. Here in the 5th section [Bocozel]…it was as if the bastion of the disease itself was located here. (Male community representative)

In addition to this physical burden, participants commonly reported people living in fear, sadness and anxiety. This psychological distress was linked with important disruptions in everyday life and social relations, including a rejection of suspected cases and an exodus of fearful residents from affected neighbourhoods.

‘Nou te vrèman pè’ [We were really scared]…There are people who had it, their families still took care of them. But [others]…they were afraid of going near them…People [also] died because when they got it, they would need a taxi driver to transport them. Taxi drivers were afraid of you. (Female farmer)

If [you] didn’t get a grip of yourself, you would have gone crazy. Because no one really stayed put. They were running [because] they saw a disease that was killing people. (Female participant)

Several male farmers further described negative interactions with urban residents who were afraid of coming into contact with people or food from cholera-affected rural areas.

My wife lives in Gonaïves…Before ‘kolera’ [cholera] had reached Gonaïves, [when] I would go to bring her merchandise, some people would run to my side…But now, some would come out, look at me, but wouldn’t come close. ‘Yo vin pè paske zòn kote m soti a kolera ap fè ravaj’ [They’d become afraid because cholera was ravaging through the area that I come from].

Despite fear, a few participants noted the formation of local response committees to coordinate transportation of cases to health facilities, first on their own and later in collaboration with emergency ambulance services.

I sought out five guys who had motorcycles; I bought fuel for them. Whenever someone said they had ‘dyare’ [diarrhoea], they took the person on a motorcycle and quickly brought them to [a health center]…All night long, we were picking up people…When things got worse for us, we had to call ambulances from Saint-Marc. (Male farmer)

Knowledge of cholera before and during the epidemic

When we asked participants about cholera knowledge prior to the epidemic, almost all indicated unawareness of the disease before its introduction to Haiti.

When the cholera disease was causing ‘ravaj’ [ravage], no one knew what it was. We all heard about people dying…‘Tout 5èm nan nèt, moun ap mouri’ [All over the 5^th section of Bocozel, people are dying]…But we didn’t know the disease’s name. (Male community leader)

Three participants claimed to have previously heard of ‘kolera’ (the Haitian Creole word for cholera) in reference to diarrhoeal illnesses in Haiti or in news reports of outbreaks in other countries. But two of them acknowledged a misuse of the term for simply ‘any other diarrhoea’.

Lacking previous exposure to epidemic cholera, most remembered an attribution of the first cases and deaths to ‘malefisans’(maleficence): the deliberate use of witchcraft or ‘poud’, a disease-causing powder purportedly lethal following contact.

At the time, in October [2010], we were in the fields and a man named Jean…they came back with him very sick. ‘Se te dyare, vomisman’ [It was diarrhoea, vomiting]…But his family thought that something else was happening with him…like a ‘poud’ used on the streets…a ‘malfesan’ [maleficent person] attacking him. (Female homemaker)

A very small number of participants also reported themselves or others interpreting some early cases as ‘vant pase’ or ‘usual’ diarrhoea, attributed to gastrointestinal issues such as colic.

As the outbreak rapidly expanded across localities, these initial views were largely abandoned and replaced with news reports or rumours tracing the source of the epidemic to a contamination of the Artibonite River.

The first thing said was, ‘They put something in the river’…No one knew who the ‘they’ were. MINUSTAH [the United Nations peacekeeping troops linked to the introduction of cholera in Haiti] was mentioned later on. (Male community representative)

Such statements, according to several participants, generated scepticism among some residents who reasoned, based on the historical use of the river across many generations, that ‘mikwòb pa touye Ayisyen’ (microbes don’t kill Haitians).

By the time of the focus groups, however, local understandings of cholera generally aligned with public health messages disseminated by the Haitian Ministry of Health and its partners, and which focused on prevention and treatment. Prevention messages, communicated in Haitian Creole and translated here, included content such as: (1) wash your hands with soap and safe water, (2) use treated water, (3) wash fruits and vegetables with treated water, (4) cook all your food thoroughly and (5) throw away stool and vomit in latrines.24 Additional content discouraged open defecation and emphasised environmental hygiene or cleanliness.25

When queried about their current knowledge, most participants who addressed the cause of cholera associated it with a microbe or unsafe health practices, particularly the ingestion of contaminated food or water and unwashed hands. Two men specifically referred to the pathogen as V. cholerae.

It is a germ-causing disease, ‘yon mikwòb’ [a microbe]. (Male farmer)

You can get ‘kolera’ from…untreated water. (Female community leader)

When participants discussed prevention measures, they most frequently listed handwashing and water treatment, followed by proper food handling and an avoidance of open defecation.

We wash our hands, wash them very clean…treat the water so we don’t get it [cholera]. (Female farmer)

A minority further highlighted cleanliness, which paralleled a belief among some participants that cholera ‘loves dirtiness’ or could be transmitted through filthiness.

Don’t put dirty clothes on…so you don’t expose yourself to the ‘mikwòb’ [microbe]. (Male teacher)

Cleanliness is good, because even though there were a lot of people in my compound, only one person had the disease. Because people always took their responsibility, always cleaned their hands and bodies. (Female participant)

Concerning treatment, participants’ responses corresponded with changes in their causal perceptions of cholera. In the early days of the epidemic—when awareness of this specific disease was low—individuals who attributed symptoms to gastrointestinal ailments treated illnesses with home remedies (eg, herbal teas or other local concoctions). If symptoms worsened or led to a death, especially in settings experiencing multiple cases, attempts were made to seek medical care for survivors.

When we saw people dying, you saw people with ‘dyare’ [diarrhoea] and then dying, when you see others ‘atake’ [getting attacked], you bring them to the hospital. (Female participant)

With improved knowledge, the most cited treatment steps included the provision of some form of oral rehydration solution to suspected cases, their transportation to health facilities, or both.

If the person has cholera, just make some ‘sewòm’ [oral rehydration solution] if you haven’t gone to the hospital yet. Take some ‘sewòm’ with you on the way to the hospital. (Male driver)

In addition, the self-medicated use of antibiotics and antidiarrhoeal agents (eg, tetracycline and loperamide) was frequently reported.

Community vulnerabilities and perceived risk of cholera

Participants described several conditions that placed Bocozel residents at elevated risk for cholera, including the region’s predominantly agriculture-based occupational structure. Many noted farmers’ susceptibility and associated it with their interaction with the contaminated river through irrigation canals and their limited access to potable water and latrines while in the fields.

For some people, it happened in the fields…The person was fine, came from the field and then had the disease. (Female homemaker)

Those who died drank from the water along the road while working in the fields…‘Yo pa jwenn bon dlo trete [tou prè yo] pou yo bwè’ [They can’t find good treated water to drink nearby], so they drink the [untreated] water while working. (Male participant)

Some further pointed to Bocozel’s vulnerability to flooding, which created favourable conditions for cholera transmission.

Every time there’s a storm, it’s on us…[A]s soon as the flooding comes, it’s an ordeal…Water oozes inside the house. (Female homemaker)

[W]hen the river’s in flood…it brings all the feces, all the filthiness near [or] inside our yards, and leaves it there when the water recedes. (Male carpenter)

Others stressed how poor road conditions and limited access to health facilities, which were at times worsened by flooding, contributed to delayed care and preventable deaths, especially with the arrival of cholera in October 2010 coinciding with the rainy season.

It was a bit difficult at the time because of frequent rains. And the roads to get to the upper 5^th section are not good at all. So, taking someone to [a health center] was very hard. (Male community representative)

We don’t currently have a health center in the lower 5^th section…[And] when it [cholera] first arrived…if someone didn’t see a doctor within 4 hours, he could die. ‘Se sak fè te gen anpil moun ki te mouri’ [That’s why a lot of people died]. (Male community leader)

In this environment, survival from cholera was considered dependent on one’s access to ‘means’ and ‘opportunities’ (eg, family resources, social assistance) that could mediate the exacerbating effects of structural deficiencies. For those lacking such means, death was the expected outcome.

[W]e have…nothing to survive on. If you’re already struggling and this disease is ravaging you and you can’t find anyone to provide some assistance, what’s going to happen to you? Aren’t you going to die? But if there was someone to provide assistance, death wouldn’t come near you. You wouldn’t die prematurely. (Female homemaker)

Several participants used this indirect language of ‘struggle’ or ‘lack of means’ to allude to poverty, or employed words such as ‘someone’ or ‘they’ to refer to those in authority or with the perceived power to address its impact. A few simply observed that communities were abandoned both before and during the epidemic, making no references to unspecified culpable entities.

If the disease had started in the Artibonite, in the 5^th section…no one would have come near us, as we were already abandoned as it was. (Male farmer)

‘Zòn lakay mwen manke jwenn sèvis’ [My home area doesn’t receive enough services]…The river water flows down to the locality and people still use it. (Female homemaker)

This sense of abandonment was echoed in evaluation of the early institutional response to cholera, which was deemed too late to prevent the first wave of deaths.

When they came, people were not [dying] anymore. Everyone who were dying had already died. (Male community representative)

Where aid was provided, many claimed that it was insufficient, inequitably distributed, based on friendship or political ties, and coming at first mainly from individuals who were campaigning for political office.

They gave one bar of soap for handwashing, but you have as many as 4 to 5 children in the house. (Female participant)

If you were not in step with [the candidates], you couldn’t receive it…‘Yo fè politik avè l’ [They played politics with it]…They protected us so we’d still be alive to go vote for them. (Male taxi driver)

A minority nevertheless complimented some members of the health, water and sanitation sectors for their assistance.

[One NGO] did a good job. There are people who didn’t have toilets in their compound; they built toilets for them. (Female participant)

Cholera prevention practices and barriers

Participants highlighted some improvements in health behaviours since epidemic onset. They reported that individuals were more likely to wash their hands and treat their water for drinking and bathing. Some also mentioned making efforts to purchase pretreated water or treatment products, using their own resources, either when communities did not receive such supplies during the emergency response or after free distributions had ended. Their reasons for adopting and maintaining these practices included the high impact of cholera or the risk of illness, which a minority, particularly men, blamed on a collective ‘negligence’ of hygiene measures before the epidemic or persisting individual neglect.

We didn’t usually use Aquatabs [a brand of water purification tablets]. Now, we do. (Female participant)

Till now I always do it [handwashing]. Because it’s something that we should have been doing even before ‘kolera’…It’s our lack of—it’s our ‘neglijans’ [negligence] that allowed [this]. Because cholera had occurred in other places and didn’t inflict all this damage. (Male teacher)

In spite of the cited improvements, some women indicated that poor access to needed resources contributed to inconsistent use of treated water or treatment products.

They use Aquatabs or Clorox [bleach] when they have them. When they don’t, they use the river water.

Our locality is far from [the center of Bocozel], and to buy a gallon of treated water, one would have to go to Saint-Marc. It’s very difficult to come back with it. Even when they do, they don’t use it as [much as] they should. [And] they can’t find Aquatabs in the area.

With respect to sanitation, participants generally reported seeing little to no changes in open defecation practices. They most frequently listed a lack of latrines for the continued behaviour, and financial constraint as the main barrier to their construction.

In my locality, ‘se nan rak preske moun yo fè bezwen yo’ [it’s virtually in the bushes that people defecate]. Even though I work as a health agent telling them of the danger in it… they cannot take actions…Only the few people with some means have a little pit in their yards. You may see those with more means build a latrine with concrete blocks, but others cannot use it. (Male farmer)

Given these obstacles, many wished for some type of governmental or humanitarian assistance to improve prevention practices.

If [this NGO] made a visit, [it]’d see the necessity for building more latrines in this area, because it needs it. (Male carpenter)

‘Leta’ [The state] could take all the necessary measures to provide potable water. (Male teacher)

Despite acknowledging a need for assistance, three women agreed that the government would never be able to subsidise universal coverage and individuals themselves must ultimately take responsibility for sanitation.

There are people who dug pits themselves…and use it to defecate…Sometimes, people use the state as an excuse. But, really, you must help yourselves. By the time to cover the entire country of Haiti—what kind of state would be able to? (Female homemaker)

Although men did not express this view themselves, a few saw an individualistic attitude among latrine owners who were unwilling to share facilities. These owners seemed to convey to non-owners that they should ‘naje pou soti’ (swim their way out) of their circumstances, and not expect assistance from others.