Conducting multicultural research — Understanding the communication link between individual transformation and cancer survivorship

 

Making it happen – Experiences of collecting data during my summer research

 

The following account of my summer research is in a journal format, elaborated from handwritten notes as I conducted the research from June 2 through July 2, 2008 in Pune, India. The personal account is divided by weeks.

— Avinash Thombre

 

Week One (June 2-7)

 

Pilot-testing a 20-page (300-item to be precise) long questionnaire designed to elicit the link between individual perspective transformation and cancer survivorship among Indian cancer survivors was all that was going on in my mind as I landed in Mumbai, India, on June 2. Perspective transformation, for the record, is defined as unique successful coping strategies that trauma survivors indulged in. A key strategy involves significant amounts of self-reflection and self-communication observed among survivors that leads to taking an active role in their diagnosis and thus successful fighting of the disease. As I was riding the car for the next three hours (120 miles) appreciating the new freeway recently constructed between Mumbai and Pune, the nagging concern was not far off my mind – how will everything unfold. Even though I had a few conversations with my cancer center contacts in the past two months about exactly what I intended to do when I landed, I still had lot of apprehensions as to how everything will ultimately fall out. This anxiety was understandable precisely because I had a limited amount of time and one single opportunity (I had to get back to Little Rock in 33 days to teach summer school in July).

 

As I arrived in Pune exhausted after the 44-hour airplane journey, needless to say I was in complete jet lag. The next 12-hours were spent talking to visitors in half awake and half sleep state. Finally, my body could not make sense of day from night and I ended up sleeping for the next 18 hours. However, even in sleep I was contemplating how I will administer the questionnaire, sometimes saying to myself, well, I will get the data that I need and at other times being completely negative about it – it is not going to happen.

 

Making Networks Work

The next day on June 4, well after I got back to my senses, the first thing in the morning I did was to call up a great networker, my key contact Rahul Chandawarkar (freelance journalist and a good friend too). I briefed him as to why I was in town and what my research was focused on in order to get his advice on the best way to go about it. He gave me a few additional key contacts in addition to my contacts at Ruby Hall clinic were I had planned to collect data, and suggested other possible sites – Care India, Prashanti Cancer Care Mission and Cancer Patient’s Aids Association, just in case things got out of place then as planned.

 

Going through the contact list, I called my key contact Lavni Mathews, a medical social worker, at Ruby Hall. A meeting time was set for the next afternoon on June 5 and there I was in the state-of-art cancer care facility – a 9-floor glass and concrete building gleaming from the outside. I was amazed to see the entire place full of activity with patients waiting to see the doctors or get their clinical tests done, along with hordes of family. The hospital, unlike others, was spick and span, with a definite touch of professionalism from the staff, much like we experience here in Arkansas.

 

Even though I had a verbal go from the staff, Lavni and I talked about the complexity of me actually getting a written go that involved the scary review from the hospitals research and ethics committee. Lavni put me in touch with Sachin Dandavate, the cancer center administrator, who had the power to make things happen. Incidentally, Sachin and I worked together before when I was a medical correspondent and he was the public relations officer at that time. Though it had been 6 years since we met, and now Sachin was a key man at the hospital, he immediately recognized me and said, “Oh, Avinash, how are you? I remember you left to do your Ph.D. in America. What are you doing here, have you come back?” It was a relief to see that I had one more solid connection now at the hospital and felt ever more confident that my research would be executed as planned.

 

Then on June 8, Sachin, Lavni and I met Dr. Dilip Bhanage, chief of the cancer center, and several other doctors who wanted to know more about my transformative experience research before allowing me a formal go. The next couple days were spent in meeting the chair of the ethics committee, Dr. Balera, and more importantly the superintendent of the hospital, a young lady named Dr. Sujata Malik. Having talked to these key people, I got a sense that while all of them were okay in principle with my data collection method, they warned me that it would be at least a week before I could start the process considering that the ethics committee (which consisted of several doctors) met only twice in a month. While I felt badly about the time frame, I was very excited that I might be able to start the interviews soon.

 

 

Week Two (June 9-14)

 

Getting Research Help

 

As these things were unfolding, still on the back on my mind was a nagging worry. How will I be able to administer about 150 questionnaires by myself? I had spread the word earlier that I needed some willing help of at least a couple students or researchers who can simultaneously administer the questionnaires. I did get suggestions on where I could get help and was pointed to area colleges where students looking for work may be able to help out. But this being summer in India and with all colleges on holidays, I was drawing a big blank. On June 9, Sachin introduced me to one key person at the hospital — the executive director of clinical trials Dr. Shriram Inamdar. Looking back, this person was a key figure in terms of getting me the much-needed help. In between handling his non-stop ringing cell phone and attending to the many colleagues waiting to see him, Dr. Inamdar listened to my story and quickly yelled a couple names. “Sheetal and Daksha, who are our clinical research helps, would not mind helping you administer the questionnaires.’’ He quickly introduced me to them and directed them to help in whatever way possible. So this is how I got my two research assistants.

 

The next four days were spent explaining to both ladies about the aims of this behavioral research as both of them were trained only to collect medical samples from the patients. A short training session was undertaken in which the two were briefed and debriefed about what was expected. A day was given for them to process this information after which a lot of time was spent answering their questions. A game plan was chalked out. As a first step pilot testing the long questionnaire with five patients once the go comes in was planned. The first five patients had to endure the 20-page long questionnaire that tested their coping mechanism, benefit finding, sense-making, spirituality, and health outcomes. A shorter 5-page questionnaire was pilot tested with 5 caregivers with the help of Daksha and Sheetal. Very quickly it was found that our patient questionnaire was taking too much time and effort. So we modified the questionnaire to 5 pages. The caregivers did not have any difficulty in answering the questionnaire and so it was unchanged.

 

 

Week Three (June16-21)

 

      With a piloted questionnaire in hand, a very excited Daksha, Sheetal and I started administering the questionnaire. Daksha, being at the hospital for over a year conducting clinical trials, was a great help in locating recently diagnosed head and neck, breast and lung cancer patients in stages 1 and 2. Sheetal, who had also spent equal time in the hospital and trained as a medical doctor in the homeopathic field also had access to many patients. So we divided sets of 20 questionnaires for each of us and went about administering them. The first day was very encouraging and we got 4 patients and caregivers each. So off to a great start. Both the research assistants worked hard interacting with patients as they were waiting for their radiation or undergoing chemotherapy. Long conversations with the patients and family members were very revealing about the cultural understanding of how patients and their family members processed cancer and coped with it. Particularly emotional was how patients and their loved ones underwent a day-to-day battle with cancer. During the week we managed to administer 42 sets of questionnaires

 

 

Week Four (June 23 – July 2)

 

Just to give background the questionnaire testing is a key step in my global research of understanding transformational experiences. This line of research examines how individuals handle trauma communicatively to come out of it as survivors. The research started while completing my doctoral degree in speech communication at the University of New Mexico in Albuquerque. I worked initially in New Mexico with HIV and AIDS patients, to later include cancer patients in the study to examine the unique coping strategies used by individuals when they have been diagnosed with a chronic disease. But naturally I noticed a series of stages that patients go through, one in particular that not many individuals were able to progress through intrigued me – the process of transformation. I observed that some patients used unique strategies and underwent what is called transformative experiences. We also saw a remarkable ability in these survivors to use various narrative communicative strategies to share their stories with others.

 

In the last week, we wrapped up our research by completing another set of 25 questionnaires. The partnership with Ruby Hall cancer clinic allows us to examine the transformation process. I am hoping that research has greater applications than helping cancer victims accept their diagnoses. As the number of individuals diagnosed with chronic diseases increases, this line of research hopes not only to increase survivorship but also as these survivors live longer, this understanding will help improve their overall quality of life.

 

Having bid farewell and thanked everyone involved in the research, I am here in Little Rock now very excited to analyze the patterns in the data with the help of my research colleague Dr. Allen Sherman from UAMS.