Using Community-Centered Root Cause Analysis to Reach the Last Mile in NTD Elimination

By Dany Chhan, WI-HER Senior Associate

A health worker in Uganda offered Julius Otim* medicine that prevents and treats trachoma infection, but he refused to take it.

Trachoma is an eye disease that causes blindness or visual impairment around the world, including among people in Julius’ town of Moroto, Uganda. It is transmitted by flies and infected surfaces like hands and clothes that have been in contact with the bacterium Chlamydia trachomatis. Trachoma can be prevented by taking antibiotics, which are often distributed by health workers to entire at-risk communities at the same time via mass drug administration (MDA). Maintaining facial cleanliness, as well as good hygiene and sanitation, are also vital to prevent the spread of the disease.

“In my family,” Julius said, “there was a belief that our relatives got blind because of a curse caused by one of the cows used to marry my great-grandmother. This cow is said to have been blind.” Because he did not understand how trachoma spreads or how to prevent it, Julius refused to take the preventive medicine when the health worker offered it to him.

Misconceptions like those in Julius’ family are common in communities that face the devastating effects of neglected tropical diseases (NTDs). People’s misconceptions, information gaps, and fears about NTD causes and prevention techniques contribute to continued NTD transmission in some communities. Other factors, such as systematic challenges in access to health care and lack of community acceptance of MDA, also contribute to the continued prevalence of trachoma in Uganda.

Root cause analysis (RCA) is a process for assisting programs in rapidly identifying populations that are being missed with interventions and barriers they are experiencing. Through community RCA, programs learn why these populations are not participating in order to facilitate targeted, localized action.

A root cause analysis (RCA) helps identify gaps in the health system and considerations around gender, socioeconomic status, livelihood, ethnicity, religion, and disability that serve as barriers to communities accessing and accepting NTD services. These barriers are common among the most marginalized populations and communities, as they experience overlapping and diverse forms of vulnerability and identity, such as conflict-affected populations, Indigenous and migrant communities, cross-border groups, youth, women, and ethnic minorities. Many of these populations inhabit a country’s proverbial “last mile” of NTD elimination. Only by understanding and addressing the reasons why individuals and communities miss or choose not to take NTD preventive medicine can governments strive to achieve the WHO’s target to prevent, control, and eliminate NTDs by 2030.

What a Root Cause Analysis Tool is & Its Role in Behavior Change Activities to Reach the Last Mile

Recognizing that rapid assessment and localized action is increasingly needed in NTD elimination, USAID’s Act to End Neglected Tropical Diseases | East (Act | East) program worked with governments to conduct gender equity and social inclusion (GESI) assessments to better understand the constraints and opportunities to improve MDA coverage in five countries, Ethiopia, Haiti, Nepal, Tanzania, and Uganda. To operationalize the assessment recommendations, Act | East works with local stakeholders to apply an RCA tool as part of  WI-HER’s iDARE™ methodology to ultimately co-design and expand local solutions with the groups most often missed or excluded by NTD services.

The Root Cause Analysis tool and overarching implementation process serve as a bridge between larger-scale assessment and targeted programmatic action (Figure 1).

The RCA tool includes questions on perceived norms, attitudes, beliefs, and influencing factors that shape the respondent’s decision to participate in MDA. Local health officials typically deploy the tool among a sample of the local population who missed taking the medicine in the previous MDA. The results give local officials insight into who precisely missed the previous MDA and why.

In response, influential stakeholders, such as religious leaders, local political and cultural leaders, male and female elders, teachers, business persons, and local health workers, can design and implement action plans to address the reasons for low MDA uptake identified through RCA. Using these data and action plans, district health officials engage in strategic planning for regional and district-wide MDA and microplanning at the sub-district level.  As a whole, this rapid assessment results in an enhanced understanding of context and location-specific coverage issues that foster locally owned and implemented solutions.

In Moroto, Uganda, root agents used the RCA tool to ask community respondents who contributed to their health decision-making, and many respondents named Julius Otim as an influencer. The Moroto district health office then equipped Julius and other community-endorsed influencers to address the RCA findings ahead of the next trachoma MDA.

Julius shared, “Following my selection as an influencer and the trachoma training I received, I was able to understand all the signs and symptoms of trachoma, and these are the same I saw with our relatives who became blind. With this information, I was able to mobilize my relatives for MDA, telling them blindness in our family was not caused by a curse but untreated trachoma.”

Julius worked within his family and larger community to share accurate information about trachoma and its prevention ahead of the next medicine distribution. Addressing the specific misconceptions that the RCA identified as prevalent in that area, Julius, for example, counseled charcoal burners and mobile workers, who the RCA identified as more likely to be missed by MDA. Interactions like these highlight the power and necessity of identifying the root causes of NTD program challenges and crafting solutions grounded in this community context.

3 Country Examples: How RCA was Used to Strengthen MDA Planning and Implementation

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* Names have been changed throughout to protect the privacy of the individuals.