By Student Guest Blogger:
McCormick School of Engineering and Applied Science 2012
Research Topic: Ugandan Hydrocephalus Project
Research Location: Mbale, Uganda
Research Update: I am in Mbale, Uganda with a fellow Northwestern student, Emily Laning, working at a pediatric neurosurgery hospital. Most of the patients are infants with hydrocephalus or spina bifida. The hospital sees about 900 of these cases a year. While spina bifida is a condition children are born with, the majority of the hydrocephalus cases are post-infectious, meaning they acquire the disease after birth from an infection, typically meningitis. After a recent research project’s results were analyzed, it was found that 50% of the patients who leave the hospital healthy after a successful surgery end up expiring or being in life-threatening states because of ignorance and neglect by the parents. Our project involves developing a post-operative education program for the parents so that they understand their role in the necessary care for the child; this ranges from preventing pressure sores from accumulating on the paraplegic child to simply knowing the symptoms that indicate the child should go back to the hospital. Much neglect stems from the stigmas that the culture has put on these conditions, so the education also heavily emphasizes the value of the children and the incredibly bright futures they have. Many villages and communities will say that if the parents take the child to this hospital, CURE Children’s Hospital, they are wasting their money as the child is not a value to society or even a curse.
After collecting data from past patient files and current patients in the ward at the hospital, Emily and I have created an assessment to determine the level of knowledge the parents have about the condition of their child, the necessary care to be given at home, and how they will respond to any negativity that may come from their families and communities with regards to their child. The results from this assessment show the social workers and nurses of the hospital where the parents may need more education. Next week we will begin administering the assessment and collecting data to edit the form. In this process, we are also trying to edit a form created by a Yale medical student who was here a few months ago. His form evaluates quality of life of returning patients, specifically those treated for hydrocephalus. These results combined with those of the assessment will help us start an outline for an education program the hospital will start for the parents. Patients are here an average of 6-10 days and the program will be a cycle of educational lectures or activities that will prepare the parents for discharge and being successful when they go home.
As we went through the patient files to acquire information about past patients from the ten years this hospital has been running, we found that the hard copy, non-electronic system is extremely unorganized and difficult to navigate. Emily and I have looked through the forms that the different departments give to the patients and have eliminated redundant questions, added key, unasked questions, and created a plan to consolidate the forms in one central file instead of each department having their own file for the patient. We have a meeting set up for next week with the heads of each department to present our plan and hear what we should keep about the plan and what needs to be adjusted. A computerized system is something that the CUREInternational headquarters in the U.S. would love to start, but the current infrastructure will not support an immediate shift in that direction. However, Emily and I have been asked to make some sort of outlined plan of what would need to happen to make that shift and what the projected time frame would look like. Either way, having a more organized filing system will make the switch much smoother.