Even to this day, there are still times when I wake up and long to be back in our bustling, historically rich summer abode that was Madurai. Memories of late night talks with Manya, Celeste, and Suhaas in our Inspiration “living room”, eating home-cooked lunches in the canteen amidst busy days of work, and making that short morning walk between Inspiration and LAICO or the Hospital still often come back to me in my dreams.
When I arrived in Madurai this summer, I didn’t know much about what to expect from this internship. What exactly could I, as a recent first-year in college, even contribute to this thousands-strong eye care system? Fortunately, our internship coordinators, Dhivya ma’am and Srilakshmi ma’am, helped us take our first steps as we embarked on this journey. Right on our first day, we were taken on a tour of the Paid and Free Hospitals, to learn a broad overview about the different departments and even shadow a patient as they went through the process of receiving their needed care. Amongst all the places we visited, and amongst the MLOPs and doctors I was able to briefly talk with during these first couple of days, I remember most strongly resonating with one department in particular, pediatrics. Of course, there was the natural excitement that came with this distinctly colorful and vibrantly decorated department with constant bustle and youthful excitement from all the children and their parents and grandparents that was a natural draw. But there was even more on top of that. We had learned during our intro presentation that Dr. V strongly believed in the power of prevention as the best form of care. It seemed natural to me, then, that the best way I could contribute, was helping to treat eye diseases and prevent future vision problems at as early an age as possible—for kids!
After I conveyed to Dhivya ma’am about my interest in working in the pediatric department because of this, she arranged a meeting with some people who I could potentially work with—Dr. Janani, one of the Medical Officers in the pediatric clinic, and Murugaraj sir, who is in the DTP (Communications) Department in LAICO and focuses on creating patient education and communication materials for pediatric patients and their families.
My initial meeting with them resulted in a project topic I was very excited about. Amblyopia, also known as “lazy eye” is the leading cause of pediatric vision loss. It occurs when one eye has greater visual acuity than the other, resulting in the brain simply not using the weaker eye over time. Almost 5% of all children in India have some degree of amblyopia, and it is essential to treat it an an early age to prevent monocular vision loss. Untreated amblyopia is a significant cause as well of complete vision loss during adulthood in the future. As I learned from Dr. Janani, the treatment for amblyopia is very effective—patching, or optical penalization, is done to the stronger eye to force the brain to increase its neural connections to the weaker eye. Along with this, children are given visual exercises and sometimes even computerized games to help train their binocular vision.
Unfortunately, there is a huge problem with amblyopia treatment—kids are just not following it. Despite doctors prescribing this regimen of eye patching, visual exercises, and computerized games, a very low percentage of patients actually adhere to what doctors prescribe. As I later found out through my research project, only about 25% of patients are effectively following treatment. To add on top of this, follow-up appointments are essential for effective amblyopia treatment. Children need to return every 3 to 6 months in order for doctors to check any changes in their visual acuity and adjust treatment as needed. But even the rate of return was appallingly low—less than 20% as I found later on. Clearly, we needed to do two things: (1) find out why this low treatment adherence and follow-up attendance was occurring, and (2) develop actionable, patient-centric solutions to increase these rates to make treatment more effective.
Thus, after this eye-opening and informative discussion with Dr. Janani and Murugaraj sir, my project topic was set.
The first steps of my project involved answering that first question. I first began by talking with the counseling sisters in the pediatric department. These are specially trained MLOPs stationed in a small room towards the entrance of the department who are responsible for meeting each child with their parents after the doctor consultation, and conveying to them about the importance of the treatment prescribed, advice for following the treatment, answering any questions, and scheduling the next follow-up appointment. The first time I went here, I met Aruna sister and Nandhini sister, who greeted me with me with warm smiles as I began introducing myself and what I was doing here in Tamil. As I could tell right then, they ended up being crucial to my project throughout the summer and our friendship only grew as we continued working with each other.
I learned from them that whenever an amblyopia patient comes in, they provide the eye patches, instruct the parents about the proper way to patch: only when the child is awake, make sure they are reading or playing with toys during patching so they can strengthen their weaker eye, ensure you are using a clean patch every day. They would also emphasize parents about the necessity of bringing their child in for routine follow-up appointments, and to call if there are any questions in the meantime. Parents would, for the most part, smile and nod at all these instructions, but I could tell that actually, much of the information was flying over their heads because they were just more stressed about how they could add this additional complication to their busy lives of already having to go to work and care for their children. As I learned from sitting in on these counseling sessions and talking with these parents, step 1 of improving treatment was right here, in the counseling room.
In order to more quantifiably measure these problems and complaints with the existing treatment paradigm, and also measure at-home adherence to treatment instructions and follow-up appointment attendance, I decided to create a questionnaire that I could use to interview parents at the clinic and via telephone, about these metrics. Murugaraj sir offered to guide me in making and translating these questionnaires to Tamil.
Once we created and printed out the questionnaires, I could begin collecting our initial data. I soon began spending more time in the pediatric clinic at the Hospital than in our small office at LAICO in order to meet with the parents of patients, talk with them about their experiences with amblyopia treatment, and ask them the questions I had created. I learned a lot just through these conversations: about the different lifestyles and backgrounds of families across geographical areas and parts of society, how children were raised differently and by different people in each home, and how hard some parents were working for the bare necessities, much less have the time to think about amblyopia treatment for their child.
My patient interviews and questionnaires led to a few conclusions about the barriers to following amblyopia treatment effectively. For one, many parents were seemingly aware of the guidelines for eye patching, but were just too busy with work and taking care of all their children to make sure it was actually being done properly. Additionally, because of work schedules, different caretakers would often bring the child to their appointments each time: sometimes the father, sometimes the mother, sometimes aunts, uncles, grandparents, and a combination of the above. As a result, there was a communication gap. What the father would be told in the counseling session would not be communicated to the mother, or vice versa—and because different people were bringing in the child each time, a significant amount of information was being lost in this way. On top of this, many families just found it extraordinarily (and understandably) difficult to travel all the way to Madurai for follow-up appointments even just every few months. With patients coming from Kerala, northern parts of Tamil Nadu, and even many other states across south India and the country as a whole, it was both time-consuming and expensive to travel to AEH-Madurai. These families from Kerala told me they would have to spend a couple thousand rupees just for one trip. Even for more local people, the money spent on travel could be used towards the family, and the time to go all the way to the hospital was just impractical to take off from work. Even for more well-off families, there was the child’s embarrassment or social anxiety when they had to wear their eye patch in public.
Clearly, there were a host of very valid but complex reasons across the board of families from different backgrounds for not effectively following amblyopia treatment and follow-ups for their children.
By the beginning of July, I had developed this general idea of the main barriers to effective amblyopia treatment adherence and follow-up appointment attendance. Still, there was another aspect that the pediatric department wanted to show me. The newest method that AEH-Madurai has implemented for amblyopia treatment is computer-based visual exercises. Patients wear special glasses that filter red light through one eye and blue light through the other, so both eyes are forced to work together to piece together the red and blue parts of the images on the computer screen when performing tasks. I met an optometrist, also named Janani, who kindly let me sit in on a few of these CBVT (computer-based visual therapy) appointments. She even showed me a new virtual reality (VR) headset that the hospital had just gotten the previous day to help make these exercises even more immersive. I talked with these children and their parents as well, and I learned that the kids getting CBVT at AEH-Madurai were coming in every day. Fortunately, they all lived in Madurai so it wasn’t too much of a burden, but this meant that patients coming from further away could not benefit from this vastly better treatment approach. AEH has tried to distribute this software for use on patients’ own personal computers, but for obvious reasons, this isn’t feasible for the large portion of people in Tamil Nadu and India more broadly that don’t have access to a computer at home.
Finding a solution to accomplish CBVT across a larger scale, therefore, would be another focus of my project.
By the middle of July, I was in a solution-focused mode. There were only a few weeks remaining of the internship by this point, so I needed to make headway in designing a pilot that AEH-Madurai could test out and subsequently implement across the system after further evaluation following my internship.
As could be guessed, this aspect of my project was certainly the most difficult. It is relatively easy to find out why an existing system isn’t working effectively, but exponentially harder to actually design a better system. Fortunately, I was under the wing of Dr. Janani, Murugaraj sir, and the brilliant members of the AEH-Madurai pediatric department that definitely kept pushing me forward
My initial proposal was to transfer amblyopia follow-up appointments to vision centers (Aravind’s version of primary care centers). I arranged an after-hours meeting with Gowth sir, one of the coordinators of the Vision Centers team, to evaluate this idea. He seemed excited and supportive of the idea because it would reduce costs and travel time, create a more physical connection and communication network between the main base hospitals and amblyopia patients, and allow the children to be checked on more frequently, so I embarked upon this approach.
I arranged several meetings with 6 vision centers around the Madurai area to run this pilot program. After speaking with the Vision Center sisters, we identified two main tasks to work on: (1) developing a training protocol for the VC sisters to learn how to conduct amblyopia follow-up appointments, and (2) increasing the staffing of the pediatric tele-consultation team so it could be done daily, in order to support these VC sisters as they conducted these follow-ups. I met with Dr. Vijayalakshmi, the head of the AEH-Madurai pediatric department, who provided many insights on this approach and identified several other people in the department to talk to in order to bring this pilot program to fruition.
Everything seemed to be going on track. The department seemed excited by this potential pilot, and both Dr. Janani and Murugaraj sir were inputting ideas and feedback on a daily basis. However, this all came to a halt after a regular check-in meeting with Dhivya ma’am. After speaking with her extensively and learning more about the feasibility of implementing these changes, we concluded that this pilot would be more difficult than expected. She explained that shifting amblyopia follow-ups to VCs was a major clinical change that the entire hospital administration would have to meet to decide upon. Especially given that the time of the internship was running out, this would not be feasible to implement in the remaining time, she concluded. This meeting certainly changed my outlook on my project. This approach I was so confident about and was determined to bring to fruition had suddenly been ruled out. Initially, I was admittedly frustrated—what could I possibly do instead? However, after reflecting further, I realized how important Dhivya ma’am’s inputs were. As someone with much deeper knowledge of the whole system and how long changes could take to be implemented, she knew best about what would be feasible for me to do and best for the long-term benefit of patients.
I met with Dhivya ma’am again the next morning, and we brainstormed a new approach. With a little over a week remaining, we decided upon starting with a more patient education-style initiative. One of the aims of this new approach would be to bring in all parents of amblyopia patients who previously came to AEH-Madurai for a group session. We would host an informative panel for them to emphasize the importance of effective treatment, have a group discussion for parents to discuss problem areas, and improve adherence and follow-up attendance.
I then set out to work with Murugaraj sir to begin developing the plans and materials for this pilot. We began putting together posters, informative guides for parents, and planned out the logistics for such an event.
We also planned out additional initiatives to pilot over the long-term after the internship. One was to expand computer-based vision therapy to vision centers across Tamil Nadu for easier access to patients without a home computer. We evaluated the feasibility of this approach and consulted with the vision centers team as to plan how to implement this.
The last weekend of the internship, we all went to AEH-Pondicherry, where (as I mentioned in a previous post), I was able to get additional inputs from doctors who worked on improving treatment adherence and follow-up attendance there for advanced retinal disease patients. That last weekend definitely crystallized my outlook on my project, as I was able to develop a concrete plan to accomplish in my last week in Madurai.
Our return to Madurai brought a whirlwind of meetings, brainstorming sessions, and presentations to the pediatric department and others about these proposed pilot programs and how they could be continued after I left to go back to the US. Time was ending far too quickly, but there was no choice other than to make the best of the days remaining. Ceaselessly, the days continued dwindling, and were hurdling closer to August 6, our final day in Madurai.
I determinedly got to work tying up all the loose ends remaining and started establishing plans to help AEH continue my project after I left to go back. Murugaraj sir and Dr. Janani emphasized that they wanted to continue the initiatives I had planned, and asked if I could stay involved, which I of course excitedly agreed to do. That last day in Madurai flew by as I hurriedly said goodbye to the dozens and dozens of people who so kindly guided my project and mentored me throughout the summer, from Aruna and Nandhini sisters in counseling, to the always-cheerful team of MLOPs in pediatrics, to the medical officers and director of the department.
To this day, Murugaraj sir, Dr. Janani, and I still remain in touch and regularly communicate about this project. Despite being on opposite sides of the world, our shared excitement to implement these initiatives remains, and we are currently planning out next steps. They also mentioned they would like to publish the results of the problem-analysis part of my study, on which I am also very eager to continue working with them.
Now that I think about it, perhaps I haven’t really left Madurai and Aravind behind. Is it even really possible to let go of the dozens of friendships and innumerable memories we had there? Yes, Madurai bun parottas on Kuruvikaran salai have been replaced by halal carts on Spruce Street, the hospital has been replaced with Huntsman, and the OT has been replaced by Organic Chemistry lab, but I can always be content in reminiscing upon this truly transformative summer. I may no longer be in Madurai, but Madurai will always be with me.
Aravind Eye Hospital isn’t a place to be visited and forgotten. It is a bustling, friendly, goal-focused institution that has quite literally revolutionized eye care not only in Tamil Nadu or India, but the world over. Just the opportunity to be a small part of that incredible mission even for two months is something that I will always cherish. The selfless, altruistic mission of AEH and every one of the thousands of people that work across the system will continue to resonate with me—principles that will continue guiding me in my career and life going forward.
Perhaps the most important lesson I learned this summer is this: The greatest joy in life is doing what you love, in the service of others. Dr. Venkataswamy, the late founder of Aravind Eye Hospital, lived by this belief: “Intelligence and capability are not enough. There must be the joy of doing something beautiful”. As I think back upon my summer in Madurai, regardless of the trials and tribulations along the way, one constant was this undeniable sense of pride I felt, of standing side by side with hundreds of people who have dedicated their lives towards creating a better life and more hopeful future for all across Tamil Nadu, India, and the world.
From my internship project in Madurai to the adventures we took traveling from foggy mountains to the tropical sea, from lush rainforests to bustling cities, to even the countless spontaneous friendships we formed along the way, there is one undeniable fact about this summer in India. There was the joy of doing something beautiful.