Tales from the Cellular Underworld

Tales from the Cellular Underworld

An On-Demand Audio Service for Cancer Patients and Caregivers

Masters Thesis Project by Hriday Gami 144205004 Guided by Prof. Ravi Mokashi Punekar Project Coordinator Prof. Manoj Majhi

Department of Design, IIT Guwahati

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Certificate This is to certify that the project report titled “Tales from the Cellular Underworld: An Audio Service for Cancer Patients and Caregivers�, is an authentic work carried out by Hriday Gami (144205004) at Department of Design, Indian Institute of Technology Guwahati.

The matter embodied in this project work has not been submitted earlier for award of any degree or diploma to the best of my knowledge and belief.

Project Guide: Prof. Ravi Mokashi Punekar

Project Coordinator: Prof. Manoj Majhi

Examiner 1

Examiner 2

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IPR Declaration I the under signed student declare that in accordance to the IPR norms generally followed in Academics, I have acknowledged appropriately all sources of material/ content including visuals/ designs/ copy rights accessed from others authors/ sources/ references used in this project as part of my academic reporting.

I declare that the contents of this project report including visuals/ designs other than those whose origin/ source has been appropriately acknowledged, are a result of our original efforts.

Hriday Gami 144205004

May 5, 2016

Department of Design, Indian Institute of Technology Guwahati

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Acknowledgements I would like to express my deep gratitude to Prof. Ravi Mokashi Punekar for his guidance and support throughout this project. This experimental project would not have been possible without his insightful discussions and constant encouragement. I would also like to thank Dr. Bibhuti Borthakur for lending keen insights into the world of cancer, Dr. Kaveri Das for sharing her experience from the very initial phases of this project, and Dr. Shailesh Talati from whom I have learnt much in our brief interactions.

I am grateful to Upasana Sarma and Ekta Oza for playing an important role in shaping this project from an objective perspective, Manisha Datta for the Assamese translation and for making the trip to the middle of nowhere.

Last but not the least, I dedicate this work to Dr. Seema Khanwalkar for sowing the seeds of this project and helping me pull through at the most difficult of times. I cannot thank enough the patients, survivors and caregivers who have so openly shared the stories of illness in their lives.

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Table of Contents

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Certificate IPR Declaration Acknowledgment Abstract Chapter 1 Introduction The Landscape of Cancer Aim & Objectives

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Chapter 2 Method: Human Centered Design

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Stage 1: Empathize Insights from Experts Observations from Shadowing Insights into the Patients’ World

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Stage 2: Define Distilling the Insights

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Stage 3: Ideate The Backbone of Design Concepts Illness Stories for Tellers and Listeners

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Stage 4: Prototyping: Giving Stories a Form The Possibiities in Different Media Converging on the Design Idea

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Table of Contents

Do Similar Services Exist?

Collecting Survivor Stories Conversation Guide Producing The Podcast Episode Outlines

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Stage 5: Feedback

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Chapter 3 Conclusion Future of the Project Concluding Remarks Learnings from the Project

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References Bibliography

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Abstract

“To name an illness is to describe a certain condition of suffering- a literary act before it becomes a medical one.�

Siddhartha Mukherjee Cancer is not a monolithic illness. It presents itself in more than 150 different forms, yet we tend to perceive the illness as a unified creature.

This perception exemplifies the role of language and metaphor in giving any illness its form, which spreads over time in the guise of stories.

Tales from The Cellular Underworld is an audio service that aims to provide emotional support to cancer patients and caregivers by helping them deal with grief. The project is a service built on the principles of social catharsis, where affected individuals use social sharing as a cathartic release of emotions. On the other side, listeners feel a sense of hope by reliving stories of other survivors and caregivers.

The service transforms conversations with cancer survivors into podcasts that can be accessed online. Listeners can access the repository of narratives through web platforms, IVRS, and smartphone applications.

They can then share their own stories to lend insight into the countless faces of this complex illness. Once a considerable library of podcasts is built, it may be possible to broadcast these stories through terrestrial

Robert Pope’s Hug Robert Pope (1956-1992) was a gifted artist whose career was cut short by cancer. https://libraries.dal.ca/locations_services/ locations/w_k_kellogg_healthscienceslibrary/ robert_pope_s_hug.html

radio to gradually induce change in public perception and response to those suffering the illness.

The project followed a human-centered design method that involved conducting preliminary fieldwork, identifying opportunities for design

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interventions, outlining recurrent themes, creating a rough prototype, testing the prototype, building a modified prototype, taking feedback and designing the service model. The larger aim of the project is to change the narrative of cancer in India, from one of war, fight and battle to one of living with cancer. The Cellular Underworld does not claim to be a solution; rather a step towards molding the lesser explored aural space to enhance existing healthcare services.

This report examines the challenges faced during the project, the effectiveness, advantages and limitations of an audio podcasting service for health care. It also identifies the potential opportunities to compliment existing modes of medical care by forming communities in the aural space.

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A screen from the movie ‘Death of a Superhero’ which elaborates the struggles of a teenager suffering from cancer.

Chapter 1 Introduction Landscape of Cancer Aim & Objectives

The Landscape of Cancer There are an approximated 1.8 million people living with cancer in the country with over 1 million new cases being added every year1. A WHO study predicts that cancer rates will see a rise of 50% globally and approximately 15 million new cases will be added in the year 20202.

Cancer is a complex illness. What makes it different from other chronic illnesses is that it affects almost every aspect of the patients’ life: not only their life, but also the lives of those who surround them, the caregivers, family, friends and coworkers.

It is a difficult illness for various reasons. Firstly, it is a disease about which we understood very little till not so long ago. The explanations for the cause of cancers have ranged from the imbalance of black bile in the body to the presence of viruses, from environmental toxins to cigarette smoking and obesity3.

Secondly, due to our fragmented knowledge of the disease and its diverse manifestations in patients, we haven’t yet found a cure for it. There have been developments in the field of medicine that have helped patients manage their cancer. There are treatments that have been extremely successful in achieving full remissions in certain kinds of cancers but on the whole, cancer has remained an illusive illness for doctors in clinics and laboratories alike.

Husband chronicles wife’s breast cancer battle in photos http://www.today.com/news/touching-tribute-husbandchronicles-wifes-breast-cancer-battle-photos-8C11554438

Untimely diagnosis is one of the major problems of cancer treatment.

Due to the lack of awareness and insufficient diagnostic tools, except for in major cities in the country, the late detection of cancer is one of

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the hindrances in overcoming the illness. Since cancer often surfaces in a nonchalant manner, sometimes as a low recurrent fever, prolonged soreness, extreme fatigue, it easily goes undetected till the cancer has progressed into a more serious stage.

Each patient responds to cancer treatment differently, depending on the type of cancer, body type, patients’ lifestyle, and nutrition. Its treatment, particularly chemotherapy and radiation have severe side effects. The side effects of cancer treatment include disorientation, severe fatigue, abnormal weight gain or loss, severe nausea, insomnia, hair loss, skin darkening, anemia, bleeding problems, and low immunity.

Cancer patients are commonly found to suffer from depression due to the long span of the demanding treatment, which may last anywhere from six months to two years, sometimes even longer.

The diagnostic tests for cancer, its treatment and medication are also extremely expensive in private hospitals. As a result the government hospitals are stretched for resources beyond measure. There are only 27 dedicated cancer hospitals in the country catering to thousands of patients. There is only 1 trained oncologist for every 2,000 patients in the country1.

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Aim of the Project The project aims to improve the quality of life of cancer patients in India by providing assistive care in addition to care provided to them by the domain of medicine.

Objectives • To obtain a nuanced understanding of cancer patients’ lives in a qualitative manner.

• To draw patterns and inferences from the fieldwork in order to identify opportunities for design.

• To design a service/ system/ product based on the findings from the fieldwork, identification of patterns and redefining of the problems.

• Prototype and test the design with stakeholders and experts.

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Chapter 2 Human Centered Design Human Centered Design Stage 1: Empathize Stage 2: Define Stage 3: Ideate Stage 4: Prototype Stage 5: Test

Method for Research and Design Human Centered Design A brief literature review revealed that there were many facets to the illness and its treatment. There is sufficient quantitative documentation available with the ICMR (Indian Council of Medical Research) and NCRP (national Cancer Registry Program) about the magnitude and patterns of cancer in India but there is little qualitative documentation of cancer in the country.

The larger purpose of the project is to plug this gap of qualitative documentation of cancer in a way that is not only helpful for researchers and healthcare providers but also becomes an aid for cancer patients and caregivers.

Human centered design (HCD), a research and design method outlined

by IDEO, appeared to be the most appropriate method to begin inquiry into the vast abyss of the illness. The HCD approach entails five keys stages of design, namely empathize, define, ideate, prototype, and test.

Human-centered design builds upon participatory action research by moving beyond participant’s involvement and producing solutions to problems rather than solely documenting them‌Once the solution is integrated, human-centered design usually employs system usability scales and community feedback in order to determine the success of the solution.4

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Stage 1 Empathize Insights from Experts Observations from Shadowing Insights into the Patients’ World

Stage 1: Empathize This stage consisted of research from secondary sources followed by informal semi-structured interviews with experts (oncologists and psychologists) and stakeholders (patients, caregivers and survivors).

The interviews were conducted in person, over videoconferencing and over telephone. Three oncologists, two psychologists, three survivors and two caregivers were interviewed in detail. This was in addition to an immersive observation at the B Borooah Cancer Institute (BBCI) in Guwahati, which is the largest public cancer hospital in the northeastern part of India.

Insights from Experts: Doctors and Counselors • Each cancer presents itself differently in every person. This is where cancer differs from most other chronic illnesses. As a result, the prescribed course of treatment differs for each patient.

• Each person responds to the treatment differently as each body is unique. This is why the prescribed course of treatment is evaluated and modified based on the patients’ response as the treatment progresses.

• Even though the physical and practical aspects of cancer are so diverse in each case, it is observed that anxiety and depression are common to most cancer patients irrespective of age, gender, region, religion, and culture.

• Patients from different economic strata exhibit different levels of confidence and trust in the doctors and the treatment prescribed to them.

• There is a trend of doubting the competence of doctors amongst the affluent classes. After diagnosis, and sometimes even after

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beginning treatment, they tends to move from one doctor to another, from one hospital to another in search of a better treatment. This seriously hampers the effectiveness of the treatment, as their bodies are not completing the designed course of treatment at one go.

• The diagnosis of the disease amongst the well to do urban population takes place in relatively early stages of the disease due to awareness and accessibility to medical facilities.

• Patients from the weaker economic strata of the society face different kinds of problems altogether. Due to lack of awareness, negligence and lack of access to medical facilities, the diagnosis of cancer is fairly delayed by which time the cancer has progressed into the late stages.

• There is a relationship of immense trust between the patients and doctors.

• Due to the practical difficulties of continuing treatment, a large number of patients abandon treatment midway, again resulting in ineffective treatment.

• One of the major reasons why patients from weaker economic strata abandon treatment is the high cost of treatment. The BBCI has three categories of patients. Patients from the weakest economic strata are offered full financial assistance. Patients who are paying for treatment from their own savings form the second category. They receive subsidized treatment. The third category is of patients who will seek reimbursement of their bills from insurance companies or employers for whom the treatment is charged at a certain amount of profit to offset the subsidies 10

offered to the patients in need.

• Patients also abandon treatment due to the loss of workdays due to frequent trips to the hospital and managing side effects since all family members are breadwinners.

• The middle stratum of the society is observed to be more regular with treatment, testing and consultation. There is a strong relationship of trust between the patient and doctor.

• Even though the incidence of cancer in rural and urban population is comparable, the poor rate of diagnosis in the rural areas adds to the ineffectiveness of cancer treatment.

• It is extremely important for the patient to have the support of family, friends or the community while dealing with cancer. The patient must be supported physically, practically, emotionally and spiritually. It is observed that cancer is easier to deal with and treatment is more effective if the patient has strong support system alongside him/her.

Observations from Shadowing Patients and Caregivers • Patients have to wait for long durations in the hospitals, for consultations, tests and treatment. This adds to the levels of anxiety of patients and makes the experience extremely stressful.

Some patients travel from far off villages and towns to end up waiting hours for their turn to meet the doctors.

• Patients travel with at least one family member who assists them on their journey and stays with them through the course of their treatment. Family members take turns to be with the patient while they spend long hours at the hospital.

• Chemotherapy lasts for anywhere between 3 to 7 hours. About 10-12 patients share the general wards of chemotherapy. Patients

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who are financially better off prefer to occupy sharing rooms where two or three patients receive chemotherapy at a time.

Single occupancy rooms are also available where the patient receives chemotherapy in isolation.

• Patients come to receive treatment in different stages of their cancer and it can be an overwhelming experience to receive chemotherapy while being witness to other patients’ suffering.

• Since chemotherapy is a periodic treatment, typically administered once every three weeks, patients end up meeting the same set of people at the wards through the course of their treatment.

• Hospital staff develops an intimate relationship with the patients over the course of the chemotherapy and often tell stories of other patients who are in full remission to instill hope in the patient.

• The diagnostic centers are equally stressful due to long waiting hours in overcrowded spaces. The patients are already in an anxious frame of mind and are trying to cope with the uncertainty of their test results.

Interpreting Observations Key Insights into the Patients’ World Through informal conversations it emerged that the patients experience severe side effects of the treatment, and are sometimes driven to a point where they reconsider continuing with the treatment. Since cancer presents itself as a common fever or a prolonged cough, symptoms appear to be manageable, and it seems to be irrational to treat an abstract often-invisible illness with strong medication that only adds to the suffering of the patient. These side effects range from unexplainable 12

fatigue, insomnia, to lack of sexual intimacy and disorientation.

With the change in physical appearance, the patients begin to question their identity. The loss of hair caused by chemotherapy or the scars left by radiation, the unexplained loss or gain of weight, feeling swollen due to water retention leave the patient feeling they are inhabiting a body they do not associate with. The loss of hair amongst women is associated with taking away their pride. It takes a lot of convincing from friends and family members to help the patient regain their confidence by reiterating that there is as much beauty in their bald head. Yet, it is not something that is easy for them to accept.

Apart from the physical suffering of treatment, the patient fights a personal battle with the social and cultural facets of the illness. The extreme fatigue and side effects of the treatment render the patient incapable of performing actions they used to perform on a regular basis, making them physically dependent on their caregivers. With the limited ability to perform everyday actions, the patients lose the ability to move around freely and lead independent lives.

Due to the prolonged arduous treatment regimen of cancer, patients are unable to continue earning their livelihood and have to eventually give up their jobs and careers, at least temporarily. This situation is made worse by the expensive nature of cancer treatment. In some cases, when the patient is the sole or primary breadwinner of the family, the loss of a steady income is a blow to their ego and translates into strenuous domestic relationships.

The diagnosis of the illness and the subsequent course of treatment are extremely taxing on the caregivers as well. The sudden changes in

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relationship dynamics, financial burden, unplanned change in routines, and a lack of predictability also result in tense situations within family and friends.

“Cancer is an experience that calls into question who a person is and how they want to live the rest of their lives. Patients are compelled to re-evaluate their identity and establish how cancer fits into their life story.

This is a challenging task for individuals whose lives are so disrupted, yet must live in a social world that remains unchanged by their experience. Patients talk about the importance of the process of ‘re-working’ their lives in the context of the group.5” Cancer survivors, having experiences the difficulties and hardships of cancer, have an urge to contribute something to patients who are in the midst of the illness. The cancer is never out of their system as the fear and anxiety of relapse and metastasis always looms in their thoughts.

Even a cough, rash, or fever is interpreted with a new perspective now.

Cancer redefines their normal.

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Stage 2 Define Distilling the Insights

Stage 2: Define Through the course of the fieldwork it became increasingly clear that a holistic approach to cancer treatment is needed. Even though doctors are able to provide adequate medical care, and caregivers’ adequate physical care and practical support, there is a serious lack of emotional support and guidance provided to the patients. What to expect from treatment, how to keep oneself motivated, how to overcome depression, how to manage relationships; these are only some of the thoughts that need to be addressed in a structured manner.

“Demystifying the unknown Due to the tremendous uncertainty involved, patients described the most difficult and overwhelming phase for them as that which immediately follows the diagnosis. Patients talked about the critical importance of knowing what to expect over the course of their treatments because it made them feel more equipped to deal with whatever they might encounter. Practical and first-hand information from other patients provides reassurance that alleviates the fears that medical information alone does not.�5 Getting diagnosed with cancer caused anxiety amongst patients irrespective of the age, gender, socio-cultural background, economic background, the role they play in the family, and even the type of cancer. Anxiety emerged as the unifying problem faced by all patients and caregivers alike.

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Distilling the Insights to Identify Key Opportunities for Design: • Patients and caregivers both converged on the need for a third space, free of the burdens of being a cancer patient or caregiver.

• Long waiting hours feel longer due to uncertainty and anxiety, resulting in a stressful experience.

• Knowing what to expect through treatment is of critical importance.

Stories of survivors help instilling hope in the patient.

Is it possible to combine the three keys insights into a design solution that helps alleviate the anxiety of patients?

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Stage 3 Ideate The Backbone of Design Concepts Illness Stories for Tellers and Listeners

Stage 3: Ideate The Backbone of Design Concepts: Narrative Therapy

“Stories provide scripts for living especially for living through difficult times.

They give structure and meaning to a life that inherently lacks both. Through the power of metaphor, stories guide us through the darkness in our own lives to that place of wholeness, resolution, and light for which we long. This is why we will always tell and listen to stories.”6 It is a widely accepted belief that patients respond better to medical treatment when they are provided with emotional and spiritual support.

The BBCI in Guwahati provides group and individual counseling to as many patients as possible. Counseling activities include narrative therapy, art therapy, short excursions to nearby museums and art galleries. Discussion with the counselors revealed how narrative therapy has evolved as a significant intervention for caregivers in the medical fraternity.

“A narrative approach views problems as separate from people and assumes people as having many skills, abilities, values, commitments, beliefs and competencies that will assist them to change their relationship with the problems influencing their lives.”7

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Illness Stories for the Tellers and Listeners:

“Patients’ lives have suddenly taken a chaotic turn, their worlds are disrupted and they begin to question their sense of self and how the cancer experience fits into their evolving life story.”5 As the illness and treatment progress, the patients’ former understanding of the world and their role in it needs reevaluation. Telling one’s story and being witness to other people’s stories lends perspective to rewriting one’s own life story.

The realization that there is a stigma associated with cancer and that the discourse of medicine provides only a partial resource for re-evaluating and living life is an important element for the renegotiation of identity.5 While narrating the story, the patient is presented with an opportunity to be heard without being judged. The patient is also composing and weaving the story and giving it concrete form, which helps them witness it as a listeners. As they tell their story, it helps them see their experiences of the illness in a more objective manner and come to terms with the way in which the illness has affected their lives and maybe changes them as a person. From this position they can begin to uncover the person they could become. The act of stepping out of your own narrative and 18

witnessing it as an outsider allows new possibilities to emerge.5

Patients feel a need to express themselves to vent their emotions.

These are drawings by a cancer patient to record her journey and experiences through her illness. http://www.lyndseecordes.com/2015/02/1074/relativelyindolent_ freedman4/

Listening to other people’s stories allows the patient to recognize that they are not alone. Other people share their suffering and experiences, sometimes in varying degrees. By being witness to other people’s stories, they may discover new role models and can instill a sense of hope. As more stories are told, each individual becomes empowered and the community of storytellers becomes enriched by the diversity of the human capacity to adapt and develop.5

“Many cancer patients look for role models of hope; people who have been able to deal with the treatments and those who have survived the odds. This evidence of hope cannot be found anywhere except through the experiences of other cancer patients.”5 The counselors believe that storytelling, and narrative therapy help the patients make the transition from being in denial to accepting their illness through the stages of anger, bargaining, and depression.

At the same time they observed several shortcomings to this process of therapy. A lot of patients are unable to access the group therapy, either due to the inability to find of time (as therapy is considered dispensable when compared with medical treatment), or due to the A comic strip explaining what cancer is, in lay terms.

distance between their homes and the hospital (as some patients travel to hospitals from far off villages).

https://tapastic.com/episode/58081

Another issue faced in urban areas is that taking psychological help is considered a taboo. Most importantly, the counselors are able to help

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patients during the therapy (typically one or twice a week), but have no way of guiding the patients outside of this domain, when physical contact is lost. In addition, the lack of sufficient number of mental health professionals, one psychologist for every four lakh Indians, is a major obstacle in providing patients with access to these services.

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Stage 4 Prototype The Possibiities in Different Media Converging on the Design Idea Do Similar Services Exist?

Collecting Survivor Stories Conversation Guide Producing The Podcast Episode Outlines

Stage 4: Prototyping- Giving Stories a Form The Possibilities in Different Media Various media were explored as effective means of storytelling as well as witnessing stories. Through a brief survey of the Internet it became clear that patients and survivors are comfortable with documenting their journeys as patients or caregivers through the use of text and images. A lot of cancer patients maintain Online journals or blogs and use it as a means to express themselves through their illness. Some more creative or expressive persons also draw paintings and comics, take photographs, illustrate to document their journeys.

Text and image are the primary media and English the dominant language of expression. In a multilingual country such as India, there are various drawbacks to using image or text-based solutions. Firstly, the Internet in its present form is accessed by a very small percentage of people. English, though fast catching up, is not the most widely used language of communication. Last but not the least, literacy rate in India stands at 74%, much lower than the world average of 84%.

Considering our large population, a text-based solution would become exclusive to the population that can read. In addition to that, literacy rates in rural India are only 71% as compared with urban areas where it is 86%. A text-based solution would thus be biased towards the urban and the literate.

This leaves us with two very powerful media that have penetrated to the remotest corners of the country: radio and television.

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“Speech is the fundamental means of human communication. Even when other forms of communication- such as writing, facial expressions, or sign language would be equally expressive, people in all cultures persuade, inform, and build relationships primarily through speech.�8 Audio appeared as the most viable solution in our context. It is accessible by persons of all ages irrespective of gender, occupation, socio-economic background and most importantly their geographic location. It can be accessed through a transistor, a low-end mobile phone, a smart phone, in the car, kitchen, train and on the fields, while stationery or on the move. From the perspective of the service provider it is a low cost

https://itunes.apple.com/us/podcast/the-stupid-cancershow/id301719048?mt=2

medium. It requires little infrastructure and time to document, record, process and produce an audio episode as compared with an audio-visual episode. Audio engagement allows the listener to carry out everyday tasks with the audio forming the aural space. It is a medium that does not require the listener to hold a certain posture unlike audio-visual where the person is required to watch a screen or reading where the person must hold up a book or a screen. As a result, audio is far less fatiguing as medium of delivery when compared with video.

Apart from the practical and economic aspects of audio being the medium of choice, the arresting power of the medium and the effectiveness while recreating space and experience that is most striking. Audio allows the patient to disconnect from their physical space and enter the aural 22

space, where the narrator and the listener are able to share the intimate

https://audiobookstore.com/audiobooks/the-emperor-ofall-maladies-1.aspx

aural space. The aural space is an extremely personal space, especially when accessed through headphones. It is also personal because when the narrator recreates an event or space through description and sound modulation, the imagery produced in each listener’s imagination is discretely different and based on the person’s past experiences and visual library.

Converging upon the Design Idea How did the three insights converge into a design solution? The idea behind Tales from the Cellular Underworld is to induct patients into an aural space through an audio service that would help them disconnect from their physical space by providing stories of survivors from whose experiences they may benefit. To execute the idea involved collecting survivor stories, producing the audio clips and making it available on the Internet for feedback from patients, survivors and experts.

Do similar services exist?

Podcast services are available and widely in use in the United States where they have channels dedicated specially for cancer patients.

Individuals have started channels, such as Jesse vs Cancer and Chris Beat Cancer, to document their journey through cancer and use it as a means of catharsis. Private organizations and even hospitals run podcast channels to spread awareness about cancer, such as The Colon Cancer Podcast and Breaastcancer.org. These services are all built with the same intention, to reduce the anxiety of cancer patients. Cancer, in the U.S.A, is a much-discussed topic and the country has been systematically fighting the illness by funding research, medicine and http://www.wnyc.org/series/living-cancer/

providing medical care to all.

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Collecting Survivor Stories Conversation Guide for Survivors The patient interviews were conducted in the presence of the family members and caregivers. As a result the interaction quickly transitioned from a being an interview to an informal conversation joined by the family members and caregivers interspersed with cups of tea and bites.

This is partly because the caregivers are always required to accompany the patient for medical procedures, diagnostic tests and consultations.

They share the journey of the cancer patient from hospitals, clinics, and pathology labs to being at home with them.

A three-part interview guide was prepared based on the initial field visits BBCI, which involved participant observation and informal dialogues with patients and caregivers at the institute.

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Conversation Guide Disclaimer: The aim of this project is to bring to fore the stories of survivors to help the patients and caregivers cope with cancer.

Your story will give the patient hope that they too can overcome this dreaded illness. The experiences you share can become a guiding force and inspiration for patients, who will be able to take rationale decisions too manage their cancer.

I must warn you that this conversation will also require you to relive your experiences of cancer. Please stop me if at any time your feel uncomfortable.

Begin the discussion with questions that can be answered without much thought or recall. Questions like: • What’s your family like?

• How did you learn about your diagnosis?

• What did you do when you learned of the news?

• What type of cancer did you have? When were you diagnosed?

• What treatment did they prescribe? Did your treatment go as per plan?

• How did you cope with the side effects?

• Was the treatment expensive? How did you manage the money for the treatment and subsequent care?

• Was there a hospital in your village? How did you travel to the hospital?

Ease the interviewee into questions that need them to recall instances, don’t push too hard for details just yet: • How did you tell others about your cancer? How did they react?

• What do you do for a living? Has there been a change in your work post diagnosis and treatment? Were you able to continue working?

• How did your body change over the course of treatment?

• What are the things that have helped you deal with cancer?

Once they are in the flow, probe into the more personal details of their treatment. Help them revisit their experience.

• How did your family members respond to your illness? Were there any major changes in the family dynamics? Did your relationship change?

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• What was your most scary experience of cancer?

• What was your most memorable experience through your illness?

• Did you do something to keep yourself occupied?

• In retrospect, do you think something specific caused your cancer?

• Have there been any recurrences?

• How has the experience of living with cancer been for you?

• How has the experience affected your life? Is there something that you feel has changed after your tryst with cancer?

• What is most important to you now?

Producing the Podcasts: The conversations with survivors brought to surface the many issues they faced while managing their cancer. Each survivor had a range of experiences but certain themes emerged in each of their narratives.

These themes were then brought out more clearly through overlaying narration with the actual voices of the cancer patients.

One of the key decisions made was to use the original excerpts from the interviews and not to use any voice actors. This was in part an ethical decision, since once the podcasts are produced the survivors would be the first persons to hear and share their interviews amongst the people they knew and amongst other cancer patients.

Using actual audio has its limitations and the interviewer and the designer have little control over background sound, sound quality, pauses, emotions, and stresses in speech. We may also witness patients who might be inherently inarticulate and who will be unable to narrate 26

the story in a coherent manner. It is supposed that to stress on the

authenticity of voices and stories will help in garnering confidence in the service. The service, it is hoped, will grow organically from one survivor to another, one patient to another, building the library of stories over time.

Another decision that was made was to narrate the account in first person to make an intimate connection with the listener. It is anticipated that narrating the story in past tense will convey the sense of the survivor having overcome their illness over time instilling a sense of hope in the patient.

Initially, a pilot episode was produced and tested with a doctor, a counselor and a survivor. Taking their feedback, two subsequent episodes were produced and the pilot episode refined. The episode summaries are given below.

Episode Outlines Episode 1 The first episode is the story of this project. It talks about how a design student set off on a journey to explore the breadth and depth of cancer.

The podcast includes my personal journey as a caregiver. It ends with an outline of the scope and vision for such a service in India.

Episode 2 This episode is about how a middle-aged woman emerged resurgent after a bout with cancer. How did she deal with claustrophobia? How did she manage the finances? How did she cope with baldness? This is a story cancer made her redefine the normal and how she knitted peace back into her life.

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Episode 3 This episode is about a man, from a small village in Assam, who restructured the roles in his family, dedicated himself to organic farming and is now, what one may call, a cancer counselor to hundreds of patients in his district.

Album art for the ‘Tales from the Cellular Underworld’

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Stage 5 Feedback

Feedback from Experts: To begin with, the pilot episode was tested with an experienced oncologist. He ratified the underlying assumptions of the project and quickly got thinking about the future of such an audio service.

He was apprehensive of two issues. Firstly, the patients’ stories are most important and should not be guided or manipulated by the assumptions and intentions of the interviewer.

Secondly, it is a very sensitive subject to talk about a chronic illness with a person who has recently finished treatment. What are the precautions one must take, and the dos and don’ts of such an interview? What will happen when there are several interviewers? How will one coach the interviewers to be sensitive to the interviewee?

The podcast was also tested with a trained counselor who was also a caregiver to her mother who passed away due to breast cancer. She evaluated the podcast from both points of view, as a caregiver and as a mental health professional.

The podcast was emotionally charging and brought back a lot of memories from the past. She suggested that there be a mechanism for the listener to vent their emotions after listening to the podcast or even periodically. She believes it can provide a cathartic space that a person in illness requires, something her mother always felt the need for during her cancer. As a professional she thinks the medium will reach out to all the people who do not have access to counseling services or therapy.

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Lastly, the podcast was tested with a cancer survivor. According to her the podcast has a vast potential to reach a variety of audiences. She anticipates that listening to other survivor stories will help connect the dots for a patient who has recently been diagnosed with cancer.

“Once the unknown is demystified, patients feel a renewed sense of efficacy in their lives.

Although demystifying the unknown requires accurate medical information about the treatment and disease course, more important is the reassurance provided by other patients who have been through the treatments and who have lived with the illness.�5

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Chapter 3 Conclusion Future of the Project Concluding Remarks Learnings from the Project

Future of the Project: The project, at present, is in its nascent stage although the possibilities in providing emotional support to cancer patients are immense. Producing patient ready audio content is the first task of the project. The next most crucial task would be the dissemination of content. Due to limited resources both in terms of time and people, the most viable medium of dissemination at this stage appears to be the Internet. The podcast is made available to listeners through a blog (thecellularunderworld. wordpress.com) and the content is hosted on SoundCloud (soundcloud. com/thecellularunderworld) , which can also be accessed through iTunes.

As has evolved through discussion with the stakeholders in this project, the content may be aired over radio at a later date making it widely accessible making the podcast into a broadcast. This may be helpful in bringing to cancer narratives to popular imagination, but may also make the experience of listening to these stories impersonal.

In a model scenario though, the audio content must be accessible on demand. This may be made possible through IVRS where the listener can call a hotline number to access audio content. The IVRS would also make it possible for the listener to become a narrator and contribute their own story. The diagram illustrates a broadly laid out system design that functions as the audio service.

But how will people know about this service? After being diagnosed and beginning treatment, the patients display immense trust in doctors and other cancer survivors. These agents are who must play the role of introducing the audio service to cancer patients.

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Concluding Remarks The project began with the aim of applying a human centered design process to improve the lives of cancer patients. The designer’s role was to observe, identify and define problems in order to prototype and test possible design solutions; only to repeat the processes of prototyping and testing till the holes in the project are plugged and the idea is tested to its limit, with the possibility that it may still fail.

The project is based on the basic tenets of narrative therapy and intends to apply them into an audio service that provides a third space to cancer patients, survivors and caregivers to express themselves in order to alleviate anxiety.

Even though the feedback and testing with experts yielded a positive response towards the project, it is yet to be tested in the field with actual patients. On-field testing may reveal that patients are not prepared to enter the space of a survivor who talks about their cancer as a retrospective story. Patients may also not want to know the effects of treatment and giving them information about what they might experience based on the experiences of other survivors and patients may lead to an increased level of anxiety.

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Learning from the Project For a designer, there are many takeaways from a project of such complexity and sensitivity. It requires them to develop a sense of empathy towards others, understand and comprehend the situation of the patient while remaining objective to observe patterns and draw insights. It was a project that did not commence with a predetermined aim. The design process was hardly as linear as it appears to be in this paper. The aim and objectives emerged over the course of fieldwork. The process oscillated between insights from the field and relying on theoretical constructs of medicine and therapy resulting in divergent solutions that can only be tested through experiments on field. The uncertainty of the outcome of this project was embraced before embarking on this humbling journey.

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