Insights from a Community-Based Rehabilitation Center’s Physiotherapy Camp
Recently, I’ve been visiting one of Amar Jyoti Charitable Trust’s community-based rehabilitation centers in Sunder Nagri, a slum community in East Delhi. The experience has been not only fruitful for my research but also very personally enriching.
Amar Jyoti is an NGO that provides holistic services for people with disabilities from low-income areas. The organization’s campus contains a fully-integrated lower and middle school, a teaching hospital with Delhi University that is free to the families of its primary students, and various well-equipped vocational training classes for older children. In addition, they host various outreach programs within five low-resource communities in East Delhi. One of these programs is an on-site physiotherapy camp.
The Sunder Nagri CBR center opens its doors at 9AM from Monday to Saturday. The day begins with a preschool program for children to prepare them for the government schools when they’re of age. While the program isn’t rigidly organized, children spend most of their time writing letters from the English and Hindi alphabets for the coordinator to check and correct. They also sing and do other preschool-related activities (I had a ball teaching them songs I remember from my early days!)
In the afternoons the center hosts vocational training classes. The principal class at Sunder Nagri is beauty culture, and each day a dozen or so young women squeeze into the sitting area to learn various beautification techniques: henna, wrapping saris, hair styling, painting nails, giving facials.
The girls offered to practice their henna on me and I was thrilled to comply — they did a beautiful job on my hands and feet!
Aside from these efforts to provide education to the people of the community, the center coordinators have Masters in social work and provide counseling to anyone who desires it. The center does host other programs, but they are not nearly as robust as the ones described above.
Each week, Dr. Tarun and four physical therapy masters students from Amar Jyoti visit one of the five CBR centers. They arrive to the center at about 10AM and leave around 1PM.
Here are the most important observations I made:
- In order to let people know there was a doctor coming, the coordinator walked up and down a single street in the neighborhood around 9:30AM and told people whose doors were open that a physiotherapist was coming that day. These centers are meant to serve 15,000 people, but the only advertisement of the camp seemed to be word of mouth.
- In a later conversation with Dr. Tarun, he informed me that the center coordinators distribute informational pamphlets like the one above to people about rehabilitation. I am not sure when or how these pamphlets are distributed, however.
- The therapists were at capacity with patients the entire time. For each patient, the physiotherapist would create a card with contact information and then ask them, “aapko kya taklif hai?” meaning, “what problem do you have?” They would then write down the patient’s exact words about their pain, without any medical jargon.
- One of the masters students told me that part of her job includes translating what people mean when they talk about their pain. She said that many people don’t pay attention to their own bodies and can’t pinpoint the exact nature of what they’re feeling. This is especially a problem with female patients because they tend to be more conservative in expressing their discomfort. She told me that often she has to “extract the cause” of the issue by asking direct, to-the-point questions and by describing the different kinds of pain (i.e. soreness vs. shooting pain.)
- From this information and a physical examination (lasting about 10–20 minutes,) the therapists prescribed exercises to each patient. Though the physiotherapists return every sixth week, there is no direct follow up or relationship between patient and doctor. In especially severe or interesting cases, Dr. Tarun told me he will contact patients to come in to Amar Jyoti, but otherwise, it is up to the patient to return after six weeks to receive more services.
- The overwhelming majority of patients were women. When I asked one of the physiotherapists why, she gave two different reasons: 1) Women in this community tend to do the majority of the house work, which involves things like hunching over and making rotis for the entire family for three hours a day or carrying a heavy bucket of water for up to half an hour at the time. Frequently, these strenuous postures take a toll on the body. 2) The camp took place during the day, so most men were at work. This means that they did not receive any physiotherapy resources.
- Dr. Tarun mentioned that one of the main purposes of the camps is awareness, perhaps as much as it is administering treatment. His goal is to explain the causes of a person’s symptoms and to counsel families about what can be done. He noted, however, that in most cases, the home is not a suitable environment for rehabilitation exercises. The camps also serve as a vehicle for therapists to direct patients toward Amar Jyoti and other services so that they can receive professional help for their ailments.
- One of the therapists lamented that perhaps the biggest challenge in her work was the fact that many patients don’t take physiotherapy seriously. She said that many people ask for medicine because they want a quick fix, and again and again they have to explain the benefits of exercise: “what physiotherapy can do, medicine won’t do.” She also discussed how there was no way for her to follow up with patients to see if their prescribed exercises actually worked. Because of the lack of follow up, she worried that people would not do their exercises regularly and then write therapy off as ineffective.
- When I asked specifically about people with amputations, the masters students told me that generally these people don’t come to camps or seek out rehabilitation because they don’t believe there is anything else they can do. She said that in the case of injury many people would rather walk with an abnormal gait, living with the pain of improper body alignment, than use an assistive device. “People will think, ‘oh, he’s wearing something,’ and there will be a stigma around it,” she told me. There is a popular perception that physical disability extends to all areas of a person’s life, which limits their ability to fully integrate in society. Using an assistive device, whether it is a cane or a prosthetic, seems to highlight the existence of disability rather than minimalize it.
Questions I Have
- Are there therapists that work with people with amputations in low resource areas? Is this kind of physiotherapy the biggest need? I am interested in lifestyle modifications in general — what kinds of alterations to daily routine must happen living with an injury? How must the home be designed; what factors are making the surrounding environment inaccessible for people with different movement abilities?
- Do any other organizations provide these resources? From where else are people with amputations getting rehabilitation issues solved?
- I did not see any people with amputations during my week at the center, but I assume they exist within each community. Where are they? Are they secluded to the home? Are they able to live independently?
- How strong is the stigma around using a device? How does this affect adherence to wearing one, and how can we combat this stigma?
- I found the issue of lack of follow up frequently while writing my literature review — having people return to the doctor for a second fitting, let alone rehabilitation, is extremely problematic. How can we encourage people to continue to seek help from a doctor, and to convince them of the benefits of rehabilitation?
- After two delays, the Spinal Injuries Centre’s ethics committee meeting finally took place last week, meaning that I finally have permission to post about the details of my interviews. There will be many posts within the coming days!
- The Red Cross’s Enable Makeathon based in Bangalore is starting soon, and I am keen to participate. It is a 60-day challenge for makers, patients, designers, and the like to work together (either locally or globally) to develop assistive devices for people in rural areas. I spoke with the head Innovation Advisor for the Red Cross a couple days ago and they’re eager to have e-NABLE participate. If you’re interested, message me!!
- I have plans to attend another Wednesday rehabilitation camp after Diwali week next week. I am also collaborating with a physiotherapist at AIIMS and hope to shadow him on some of his rounds to gain more information about hospital-based physiotherapy practices.
- Yesterday I connected with the fine fellows at ESCIP (Empowering Spinal Cord Injured Persons) Trust to ask them about the adjustments they have had to make in learning to live independently after a spinal cord injury. They have showed me around the guest house and have demonstrated some life hacks, and I will be eager to speak with them more — perhaps there are some custom assistive devices that I could help them with.
- I am still working on a hand design according to the head prosthetist at ISIC’s feedback, but I have found a strong PETG filament from a prosthetics company in Germany that I think will be suitable for e-NABLE hands in a rougher context. I will post pictures of the prototypes when that’s finished.
The more I see and the more people I talk to, the more I am convinced that any product I could design within the next six months would be one-dimensional in nature. I’m not sure any product could effectively address the larger systems at play that make life for a person with a disability so difficult here in India (think: lack of employment opportunities, lack of rehabilitation for suitable quality of life, social stigmas). Of course, this is the nature of attempting to solve any complex problem: most of the time, we must chip away at it, bit by bit. The one main thing I hope to gain from this experience is the skill of identifying what can be done in these kinds of situations, and what is the most effective way of doing it. The impacts I make here during the next six months will be small, but I pray not inconsequential.