“I grew up in the time where most of us had a family physician down the street and knew everything about us. Today, we have multi-specialty hospitals, where doctors are compartmentalised and don’t talk to each other. So if you have ear pain, you go to the ENT (Eyes Nose and Throat) doctor, if you have a cough you are taken to a pulmonologist. I find this very problematic.”
Mahati Chittem’s job involves studying such trends underlying the way society responds to its health issues and medical treatments. As a medical psychologist, she looks at how people fall ill, and when they do, what happens to them emotionally, psychologically, behaviourally and physically. The illness she is currently focused on is cancer.
Just the word ‘cancer’ is enough to stop any of us in our tracks. The disease has gained infamy for its mortality rate and is often thought of as incurable, but in reality, there is a simple reason why Indian cancer patients fare comparatively worse than their western counterparts. Cancer biologist Dr Radhika Nair told TLoS last year: “Though India has fewer breast cancer cases than the US, 50% of them don’t make it because they come into healthcare so late.” She added that the situation can be corrected with better awareness and early check-up programmes. But of course, this falls outside the scope of a biologist’s work. This is where the need for researchers like Chittem’s arose.
Chittem’s work is to keep a close eye on how a patient reacts when they are told they have cancer and then track the path of their cancer journey. From these observations, the hope is to make efficient strategies to manage successful treatment of more and more Indian patients. “The broader aim of my research,” said Chittem, “is to help people make better choices for themselves so they can live healthier, longer and more vital lives.” In this video on her YouTube page, she gives an introduction into psycho-oncology.
A cancerous delay
In her field studies shadowing doctors and patients in hospitals big and small, Chittem didn’t take long to confirm that yes, people with cancer were finding out only when the cancer had reached an advanced stage. “It was clear that there was a trend of delayed presentation [detecting the cancer when it’s too late] but only one study looked into why this was happening in India,” she said.
India pays a high price with money and human life for the lack of progress in addressing this issue. A lot of people still don’t know the symptoms of cancer, Chittem’s research asserts. They also don’t know where to go for help. By the time they get appropriate help it’s too late. This results in a huge economic loss for the family, the state and eventually the country. “We’re talking about a lot of people putting a burden on tertiary care centres [specialist hospitals] because they have not been able to receive the right type of support in primary health care centres.”
With the help of collaborators in the UK, Chittem and her team developed a survey with about 500 patients in Hyderabad. The patients spanned different economic backgrounds – the beneficiaries of the Telangana government’s Aarogyasri scheme, as well as more affluent patients. Through the survey, she charted all points of contact with health care for each patient before they ending up at the hospital where she met them. These were some of her most interesting findings:
1. “Patients only learn from their own experience or from other patients”
The more Chittem and her students talked to their subjects during the survey, the clearer it became that the primary source of information for them was not government campaigns nor doctors, but other patients. “Many did not even know they would lose hair in clumps during chemotherapy. They go home after chemo, and when they run their hand through their hair, a whole clump comes out. It’s very sad, especially because they are not prepared for it.” The patients are hungry for information, and they are careful to not let any opportunity go to waste. “The only time patients get to interact with other patients is when they are waiting around for consultation. I’ve seen them really capitalise on these 15 minutes!”
2. “People from low-income backgrounds are much more accepting of their disease”
For daily wage earners, according to Chittem, it’s not about the cancer as much as it is about life. This gives them a different perspective. “The consequences for them are immediate. Being uninsured, their out-of-pocket expenditure for example travelling to far flung hospitals, is high [the government pays only for treatment] and they lose out on their wages.” The patients from low-income groups just want to get on with life, observed Chittem. They ask what they need to do to get better, and if they can’t get better, they ask how much time they have so they can move on and sort their stuff out. Chittem found this interesting because this same group of patients usually did not even use the word ‘cancer’. In a study into cancer euphemisms, she found that poorer patients preferred to refer to their condition with other words like ‘gadda’ (means lump) or ‘khaasi’ (means breathlessness). However, mentally, they seemed to be dealing with their illness much more proactively.
3. “Patients are a lot more empowered than we think”
Though we usually view the cancer patients as weak and dependent, Chittem’s research revealed that this was not the truth. “Our attitude to them is very paternalistic. We [their family] think they should not take medical decisions, not think about anything else, just receive their treatment, but my god, they know their stuff! I saw that they want information, they want to be part of their own illness [and recovery].”
Chittem and her students plan to take this research further. One of her PhD students is trying to improve question-asking behaviour among patients and caregivers. For this, they are working with a professor in Sydney who developed a protocol called the question prompt list. “My student wants to develop a model based on the patient and not on the physician because the physicians don’t have time and is sometimes not willing to learn new skills,” she said. Additionally, the question list will be designed in such a way that the information can be accessible by illiterate people, too.
The matters of the mind caught Chittem’s fancy very early in life. She was one of those children who grew up knowing exactly what they wanted to do. “I didn’t know the word psychology, but at seven I was fascinated by our school counsellor. I knew I also wanted to do something related to human behaviour.”
But it wasn’t a smooth ride. Her childhood was spent partly in Syria where her father worked and partly in India; there was a lot of moving to-and-fro, switching accents, schools, friends and cultures – until at 15, her family decided to make Hyderabad a permanent home. She was admitted to an all-girls school and though she wanted to take up English and history in class eleven and follow up with a psychology degree, her parents wanted her to do something else. They did not take her psychology dreams seriously.
Finally they came to a compromise. She agreed to take up accountancy and economics, considered better for job prospects, in turn, she could go ahead with a psychology degree if she still wanted to at the end of school. Those two years were tremendously challenging for the teenaged Chittem. “I hated it,” she declared. “Everything about that school I hated. I was fat, depressed, in a horrible pinafore in the middle of puberty.” She did not do well in school either and she says that the teachers made her feel stupid and that worsened her depression.
Finding her calling
Once she was out of school, she marched back to her parents with the same plea – ‘Let me do psychology.’ This time they agreed, as long as she continued to live with them in Hyderabad. She joined the BA Psychology course at St. Frances College. Her first year of college life, recalled Chittem, was memorable, to say the least. “I was like this super wild girl. I had already explored all sorts of unchartered territories since I was 13 or 14 and I was upset with parents so the first year of college was exhilarating. Boyfriends happened, partying happened, smoking, drinking…”
Meanwhile another unexpected change was happening in her life. “After many years of being told I’m stupid in school, I found I started doing really well in studies!” This came as a pleasant surprise to Chittem and she reacted by slowing down her social life and switching to a “sedate, focused person”.
Her first interest was in forensic psychology and in this pursuit she did internships in a juvenile centre and a jail. Chittem found her experiences there too intense and emotionally scarring. “I was just 19, and had to deal with kids who’ve been through so much. In the jail, one inmate who was with me in a small room suddenly went ballistic. I thought she would pound me to death, another person dragged me against the bars of the jail cell – it was too much emotionally, and I decided that forensic is not for me.”
After her bachelor’s degree she took a gap year during which she did a couple of diploma courses. During one, at the counselling center in Christian Medical College, Vellore, she worked with her first cancer patient, a little girl from a troubled family who had leukemia. “I was doing therapy with her. It was a wonderful experience and I began to realise that I could do something meaningful in this field.” At another course in Kochi, she learnt the importance of working on oneself. She did, and “it was amazing… I backpacked across Kerala on my own and began to read up on health psychology.”
The UK experience and difficulties of coming back
Chittem went on to do her MRes (Masters in research) in a co-taught course at Oxford Brookes and University of Oxford, graduating in 2006. She began her PhD the next year at University of Sheffield. While in India to do some data collection, she met her future husband, a businessman. They got married soon, but remained separate from each other for the next two years until she finished her PhD and returned to Hyderabad.
Chittem tried hard to get a job but there was nothing suitable. “It was ridiculous. I had job offers for Rs 5,000 per month!” she recalled. Disheartened, she returned to the UK to spend a few months working with her supervisor there. She completed publishing her papers and graduated in 2011. “At this point, my husband was like – look, you have to come back now! I thought he was probably right.”
Back she came, feeling glum about going through the job-hunt cycle again when there was a stroke of luck. “My friend was setting up the counselling services at IIT Hyderabad and she suggested I apply here.” Chittem initially laughed off this proposition. “I was a fresher. You should have seen me, with my tattoos and wildly coloured hair… I didn’t even have any publications at that time!” But when her friend insisted, Chittem went ahead and applied. Before long, she was called for an interview along with the other candidates who were much more experienced than her. The interview was challenging and Chittem was quite hopeless. But Chittem’s relaxed attitude somehow worked to her advantage. “I’d already given up so I was being bindass (carefree) and I made them all laugh.” A few days later she was stunned to hear she got the job.
Working at IIT was a bit of a culture shock for Chittem – “it’s a government job – you dress a certain way, groom yourself. Today I’m more mellow, I don’t look like a wild chick anymore. I found I am taken more seriously when I wear a salwar kameez and it doesn’t really bother me. I’m here for a bigger reason. I had to go abroad for training but not everyone can do that.”
“I want to impart world class skills in India. I want to groom my PhD students and if that means take fewer of them, then so be it.”
Beating the odds
Looking back, Chittem is amused by the fact that despite her wild past (she insists she still is a little bit wild), she somehow managed to do everything ‘in time’ or even sooner than society expects from us. “A PhD, a job, married at 25, a child at 30, another one at 34, on paper I’m ideal!” she laughed. At the time of the interview, Chittem was pregnant with her second child and working from home.
Nevertheless, life does seem to have a funny way of getting complicated, even for someone who was always pretty clear about what she wanted. “I always tell my students that it’s not easy to stick by your passion. I was constantly questioned for my choices. It has been a hard journey.”
This piece was originally published by The Life of Science. The Wire is happy to support this project by Aashima Dogra and Nandita Jayaraj, who are travelling across India to meet unsung women scientists.