When studying the factors that affect community participation in a treatment and prevention program for river blindness (a parasitic disease caused by the black fly), it makes sense to go to a location where river blindness occurs. This was the case with College of Nursing doctoral candidate Kate York, who traveled to Tanzania May-August 2011 to gather information for her dissertation: "The Community Health Worker’s Role in the Community-Directed Treatment with Ivermectin Program.”
What is river blindness?
"River blindness (onchocerciasis) is a disease that causes unrelenting itching, chronic skin changes, disfigurement by scarring, swelling and visual impairment or complete blindness. This disease is caused by being bitten by a black fly that breeds in fast-flowing rivers (mainly in Africa) and carries the parasite Onchocerca volvulus. When the fly bites, the parasite is introduced to a new host and it creates a nodule under the skin. Over time, the parasites mature and are able to produce up to 2,000 offspring (microfilariae) per day. The offspring migrate under the skin and create itching when they die. They can also migrate to the eye, causing low vision or complete blindness. When the fly bites an infected person, the parasite is transferred to the stomach of the fly where it matures over a period of one to three weeks. The cycle begins again when the parasite is injected into the next person. The disease is treatable with an annual dose of medication (ivermectin). The medication kills the offspring, but not the adult parasite, necessitating long-term treatment (up to 15 years) for those who have contracted the disease. The medication also acts as a prophylaxis for the disease for those people who live in areas at risk for infection. River blindness creates an environment for disability, decreased productivity and poverty among afflicted communities, necessitating sustained treatment and prevention efforts."
Why is it of interest to you?
"I became interested in river blindness during an international health class when I learned about the disease and efforts to control health and socioeconomic effects through a community-based medication distribution program. My focus is on community health and this program embodies the ideals of having the community take charge of a public health problem to improve the lives of the people who live there. The disease is easy to prevent and treat with one dose of medication per year, but getting people to take it year after year and sustain high rates of participation is a challenge. The program will lose external funding from the World Bank by 2015, so the national and local governments have to incorporate the program into their health system, which creates another set of barriers to sustainability. Although the river blindness is found throughout sub-Saharan Africa, I chose Tanzania for the site of my dissertation due to the functioning of the drug distribution program, the country’s openness to research that will benefit the population, my relationship with a prominent non-governmental development organization that facilitates the distribution program, the stability of the Tanzanian government and the lack of conflict in the country."
Did you see cases of it there?
"I did not see any cases in the field during data collection, but I saw a woman and a young man who were both diagnosed with onchocerciasis at an urban health center in the Morogoro Region of Tanzania. Many people who have the disease don’t know it until the symptoms become severe; that is why the prevention/treatment program is so important. The medication is given free to all endemic communities through Merck’s Mectizan Donation Program and is given at no charge during the once-a-year distribution campaign. But after the mass distribution, if villagers who did not take the medication become symptomatic, they must pay for the medication at the dispensary or hospital."
How did the trip impact your dissertation?
"The goal of the trip to Tanzania was to collect data for my dissertation through cultural emersion. There was a lot of fluidity necessary prior to and during data collection. Situations arose due to miscommunication, delays occurred and there were last-minute changes that were imperative to make the data collection happen. I finally managed to gather data from two villages that were quite different in order to observe a broad spectrum of issues related to the medication distribution program. This is just what I wanted to explore in my research. From staying in the villages and talking with health professionals, medication distributors, community health workers and community members, my breadth of knowledge grew exponentially. I spent three months In the country, which allowed me to better understand the meaning of the results of the data. I was privileged to work with a research scientist from Tanzania who reviewed the data collection methods and analysis for cultural appropriateness and accuracy. The collaborative effort has had a large impact on my dissertation."
What was the greatest personal hardship for you there? The thing you realized you can’t do without?
"Other than missing my family, I didn’t really experience any hardships. The country is full of people who are quite friendly and I felt very welcome. In fact, it was unusual to meet people who didn’t want to know how I liked Tanzania and who welcomed me to stay. The people of Tanzania are very proud of their country and its natural resources and want the world to know what a great place it is. There are aspects of living there that are quite different from the U.S., including the major power rationing that closes businesses for days at a time. The lack of power is a challenge when trying to input data on the laptop that needs to be charged, or when attempting to read transcripts by candlelight through mosquito netting, or working through the night since there isn’t always power from 11 p.m. to 6.a.m. But, all of these could be overcome with a little tweaking of my schedule and creative uses of downtime. Seeing the amount of poverty and realizing why the average lifespan is only 53 put any thoughts of me having hardships out of my head. By the end of my three months, I realized that there is nothing that I can’t do without."
Do you plan to go back?
"I plan to return to Tanzania to fulfill my obligation to disseminate our research findings to the villages that participated in the study. I collaborated with an international non-governmental development organization called Sightsavers, the Morogoro Regional Health Authority, the Ministry of Health and Social Welfare and Ifakara Health Institute, and all are interested in further collaborative studies. The study we just completed generated more questions that can be answered through more comprehensive research. I also had the good fortune of presenting preliminary findings to the Ministry of Health and Social Welfare’s Neglected Tropical Disease Division and I would like to base my next study on the effects of the recommendations given to improve education for members of the medication distribution team and the villagers."