Alison: I first helped to found the Uganda Village Project in 2003, just after graduating from college. I traveled to eastern Uganda to perform a needs assessment with two other students. Having seen the desperate needs of the communities there, I began spending more and more time trying to build the organization to serve those communities. I took over as director in 2005. I have served in the assistant director or director role since then.
UVP's core program concept is called Healthy Villages. In this program, we include a variety of interventions aimed to address the needs of each rural community we work with. We are specifically targeting a group of villages identified with the assistance of the District Health Office as being the most deficient in sanitation measures, which is a proxy for poverty level. Interventions included in the Healthy Villages Program include mosquito net distribution and malaria prevention education, sanitation campaigns, HIV testing and counseling, family planning, construction of protected water sources, and formation of a team of community health workers called Village Health Teams. The formation of these teams is endorsed by the Ugandan government, and they serve as the main point of contact for a community and source of sustainability for the programs after the communities graduate from the 3 year program.
In addition, UVP also supports a scholarship program for secondary school and university students, and helps to facilitate referral networks for common diseases of poverty for which curative treatments are locally available, specifically, obstetric fistula and eye health (cataract surgery etc.).
Alison: They are amongst the happiest people I have ever met. Their continual joy for life is part of what makes visiting the area and learning from them about their culture and traditions so rewarding. They also can be challenging to work with, because of the huge cultural divide between my experience and theirs. I sometimes find it difficult to understand the motivations behind their behaviors and practices. I would also describe them as remarkably resilient. They think nothing of doing back-breaking labor for extended periods of time to achieve their goals, which is something that is uncommon in the United States.
Alison: The fistula patients are a heterogeneous group, so I think it is difficult to make sweeping generalizations about them. We have helped to facilitate fistula repair for women ranging from a 7 year old girl to women whose ages are unknown and listed as "elderly.” However, what they tend to share is that they are from poorer households and more rural communities. The less access they have to advanced healthcare facilities, the more likely they are to develop obstetric fistula, because they did not receive the prenatal care that identified them as high risk, or they had a prolonged and obstructed labor and were not able to access a location with the capability to perform a C-section until it was too late. Part of the accessibility issue is location and part of it is money. In Uganda, men tend to control the household finances, and they may not give their wives enough money to receive prenatal care or to give birth in a healthcare facility because they do not understand the value of it.
Fistula patients are under great pressure not to take time off from their household chores, farming, and family obligations. This is so much the case that they are willing to risk the success of their repair to go back home and start working again. We have to pay them to stay at the camp so that they can justify their absence. We also do a sensitization with the family and husband in particular to emphasize what needs to be done to try to keep the repair successful, such as no sexual intercourse for an extended time after the surgery, as the women are not in a position to say "no" to intercourse to their husbands.
I believe that despite our best attempts at social support, it is impossible for us to truly comprehend the suffering and emotional debility faced by fistula patients. This point was driven home about two years ago when a woman whose surgical repair had failed killed herself before we could get her back to the camp for another surgery.
Alison: Poverty is the root cause of most of the challenges, in part because poverty forces community members to prioritize their work over healthy practices and behaviors, and to try to 'save money' by not spending on necessary preventative healthcare or treatment for diseases, although in the end of course this can result in having to pay the ultimate cost.
With fistula patients, we are working with the most marginalized population of an already marginalized population. They have no power in society and their human rights have been steamrollered. We have to give them the best social support we can offer to try to get them through to a new life without fistula.
Alison: The most important aspects of program design would be, in my opinion:
- Maximize support of the patients during the process because of their vulnerability and lack of money or power, this includes as best it can be arranged, extended follow up after the repair to try to ensure that complications are dealt with appropriately, that post-surgical precautions are observed and understood, and that success rates of repair can be monitored.
- Build capacity for continued programming locally, in terms of hospital resources and local physicians/medical officers/midwives and nurses.
- Couple the repair intervention with community education so that community members understand the actual cause of obstetric fistula and that it can be cured, to eradicate myths and misconceptions.
Alison: I worry that the fistula program is in danger because the physicians who do the surgeries may leave. The British surgeons may retire, and the Ugandan physician has considered leaving Kamuli Hospital. Fistula care does not pay well and it is highly complex. Not enough local physicians are being trained or have any incentive to be trained in the surgery.
I also worry that patient rights need to be respected during the surgery process. Because of the power differential it is easy to forget that the patients still require privacy, respect, fully informed consent, etc. Because of this issue, for the past several camps we have been providing a Ugandan medical student as an interpreter for the patients, who also gets to observe and assist on the surgeries. I also was able to facilitate an American OB/GYN resident to rotate at Kamuli this year, and hoping to continue to facilitate visiting OB/GYN residents because I think they will help bring a good perspective on improving the experience for patients as well, and it's a fantastic experience for them.