An exploration of narrative medicine with pediatric cancer patients using a symptom tracking APP

This exploration places a special focus on narrative as a means of restoring empathy and understanding to medical care, especially to a population so vulnerable to confusion and miscommunication - children. The larger project, from which this thesis project is derived, is the development and evaluation of a tablet computer-based symptom tracking app called Color Me Healthy, developed by Dr. Lauri Linder, PhD, APRN, CPON. Through this app, pediatric cancer patients described their symptoms and shared information about their day using various mediums including the creation of an avatar, diary entries, and drawings. From the twenty patients who used Color Me Healthy, and with Dr. Linder's support and permission, three patients who varied among age, gender, and diagnosis were selected. Importantly, the diagnoses represented the three most common in the U.S.: leukemia, lymphoma, and brain tumor. Qualitative data were reviewed and compiled to create snapshot narratives of each child's experience. The resulting stories that stemmed from patients' interaction with the app provided insight into how children may handle a distressing diagnosis and what is most important for their care. Major themes included an overall and persistent bother of symptoms, the importance of family and friend relationships, as well as the incorporation of play and celebration throughout treatment. Importantly, encouraging responses revolved around a high level of emotional resilience. Narrative has a potential for all disciplines (including the many within healthcare) to enhance the holistic picture of individuals and promote better care.

ABSTRACT This exploration places a special focus on narrative as a means of restoring empathy and understanding to medical care, especially to a population so vulnerable to confusion and miscommunication – children. The larger project, from which this thesis project is derived, is the development and evaluation of a tablet computer-based symptom tracking app called Color Me Healthy, developed by Dr. Lauri Linder, PhD, APRN, CPON. Through this app, pediatric cancer patients described their symptoms and shared information about their day using various mediums including the creation of an avatar, diary entries, and drawings. From the twenty patients who used Color Me Healthy, and with Dr. Linder’s support and permission, three patients who varied among age, gender, and diagnosis were selected. Importantly, the diagnoses represented the three most common in the U.S.: leukemia, lymphoma, and brain tumor. Qualitative data were reviewed and compiled to create snapshot narratives of each child’s experience. The resulting stories that stemmed from patients’ interaction with the app provided insight into how children may handle a distressing diagnosis and what is most important for their care. Major themes included an overall and persistent bother of symptoms, the importance of family and friend relationships, as well as the incorporation of play and celebration throughout treatment. Importantly, encouraging responses revolved around a high level of emotional resilience. Narrative has a potential for all disciplines (including the many within healthcare) to enhance the holistic picture of individuals and promote better care. ii TABLE OF CONTENTS ABSTRACT ii INTRODUCTION 1 METHODS 8 RESULTS 11 DISCUSSION 29 REFERENCES 33 iii INTRODUCTION The face of childhood cancer is a familiar one. It is not difficult to conjure a face – eyes, smile, expression – of one we know that has been altered by the experience. Our young loved ones’ image, coupled with cancer, may begin to twist. They may morph into those with missing hair and wearing face masks. We may envision scars from medication ports and discolored skin. Every year these faces add in the tens of thousands. The reality is that 1 in 285 children will be diagnosed with cancer (American Childhood Cancer Organization, 2020). These problems are current. In 2020, the World Health Organization launched the Global Initiative for Childhood Cancer to push for a goal of 60% survivability, especially in countries where needed programs are nonexistent (World Health Organization, 2020). It may be tempting to think that the United States is not a part of this problem. With high access to healthcare and preventative programs, the U.S. boasts an 80% survival rate for most cancers diagnosed before age 20. However, survivability is not the issue at large. According to the American Childhood Cancer Organization, “Two-thirds of those who do survive face at least one chronic health condition. One quarter of survivors face a late effect from treatment that is classified as severe or life-threatening. Late-effects of treatment can include heart damage, second cancers, lung damage, infertility, cognitive impairment, growth deficits, hearing loss, and more” (American Childhood Cancer Organization, 2020). What is not encapsulated in that statement is the disease’s effect on a child’s mental, spiritual, and emotional health, which is harder to measure. Every child will have a different experience coping with cancer, however, many children receive the same three diagnoses explained in the following section. Common Types of Childhood Cancer For school-age children, the most common types of cancer are leukemia, lymphomas, and brain cancers (Savelli & Prasad, 2019). Acute lymphoblastic leukemia, or ALL, is the most common type of pediatric cancer, with 26% of all new diagnoses attributed to it. ALL is more likely to present in children aged 2-4 years and occurs slightly more frequently in boys (Radhi, Fulbright, Ginn, & Guest, 2015). Major advancements have occurred in the treatment of ALL, and these successes have become a hallmark for other cancer treatments (Linder & McCance, Pathophysiology: The biologic basis for disease in adults and children., 2018). Phases of treatment include induction, consolidation, interim maintenance, and delayed maintenance. During induction, various blends of medicine are used in order to achieve remission. If leukemia cells reappear, a bone marrow or stem cell transplant may be necessary. The consolidation phase involves keeping leukemia from the central nervous system, and spinal taps with strong medicine may be used to clean the cerebrospinal fluid. Interim maintenance involves continued chemotherapy treatments to maintain remission and let the bone marrow have time to recover over a period of one to two months. The final phase of delayed maintenance involves a repeat of the induction and consolidation phases to ensure the removal of drugresistant cells (Kanwar, 2019). Brain tumors, or those affecting the central nervous system, combine to make up the second most common diagnosis and, importantly, the most lethal (Radhi, Fulbright, Ginn, & Guest, 2015). Because CNS development in children is so critical, treatment options are limited, and complications are often a reality. The location of the cancerous 2 tumor within the brain affects the overall survivability of the patient. Treatment options are generally initiated by craniotomy surgery, and follow-up chemotherapy and radiation to address any residual aspects of the cancer still present. The primary treatment of increased intracranial pressure in the brain is most important, and continual observation may be needed. The third most common cancer for children is lymphoma, divided between nonHodgkin (NHL) or Hodgkin (HL) types (Radhi, Fulbright, Ginn, & Guest, 2015). Because the lymphatic system is a complex web of connections throughout the body, treatment begins with “staging” which assesses how far the cancer has spread. Stage I represents localized disease, whereas Stage IV represents disease that has spread to one or more organs outside of the lymphatic system. If the disease is local, surgery can be an option. However, most children with lymphoma will receive chemotherapy treatment, often combined with radiation in order to restrict development in the central nervous system. Common Treatments of Childhood Cancers In general, and across most cancer types, patients can expect chemotherapy as the most common modality for treatment. Other treatments include surgery to “debulk” solid tumors, radiation to address any remaining cancer cells at the site, and emerging immunotherapy approaches. Side effects and experiences range across these treatment types and are relevant to understanding pediatric cancer patients’ stories. Children going through chemotherapy treatments receive “courses,” where a series of doses are carried out over several days. Children are often given days and/or 3 weeks to rest from the aggressive medications. Chemotherapy is most often given intravenously. Common side effects that can accompany treatment include nausea, diarrhea, change in food taste, mouth ulcers, and hair loss (Linder & McCance, Pathophysiology: The biologic basis for disease in adults and children., 2018). With local surgery as often being the first option for solid tumors that have not metastasized, many patients can expect an inpatient stay at the hospital as they recover from general fatigue, pain, swelling, and numbness around the surgery site. Patients will also be monitored for risk of infection during their stay (Cohen, 2020). With children receiving radiation, doses may be administered five days a week for several weeks until the accurate amount is given. These sessions are usually quick, about thirty minutes long. Side effects are largely based on the radiation target, and may include hair loss, nausea, fatigue, or skin burns (Linder & McCance, 2018). A relatively new treatment option is in the form of immunotherapy. This process involves harnessing the body’s regular attack response to disease and mandating these natural processes to attack specific cancer-causing cells. Because this treatment involves stimulating the immune system, common side effects can include mild flu-like symptoms and skin reactions, but also have the potential of creating autoimmune attacks (Cohen, 2020). Because of the variety of immunotherapy drugs, some may require infusion through an intravenous line at an outpatient clinic, an overnight hospital stay, or taking pills at home. These treatments can be given daily, weekly, monthly, or in cycles (Cohen, 2020). These continually developing methods have boosted survival rates for the most common types of cancer and are reaching as high as 90% survivability (American Cancer 4 Society, 2019). However, a cancer diagnosis within the tender years of development often means sickness for life. Many children emerge with cancer remission but face multiple morbidities extending for years. The need for cancer survivors to receive ongoing medical and psychosocial support, especially in such a delicate timeframe of growth and development, is imperative. Narrative Medicine Enter narrative medicine, a term not yet widely known. Narrative medicine has only recently emerged as a means to connect the patient and physician more closely and allow physicians to see the human side of their treatments. Rita Charon pioneered this field in the year 2000. In her groundbreaking article regarding narrative medicine, she first describes what every patient desperately needs: a physician who 1) “understand[s] their diseases,” 2) “treat[s] their medical problems” and 3) “accompan[ies] them through their illnesses” (Charon, 2001). Her solution is the skill of narrative competence, which she defines as “the ability to acknowledge, absorb, interpret, and act on the stories and plights of others” (Charon, 2001). This competence, combined with medicine, creates the discipline of the field. Of no doubt, in her introductory remarks Charon is prescribing to the physician. Her descriptions of “medicine’s central narrative situations” (Charon, 2001) are titled as follows: physician and patient; physician and self; physician and colleagues; and lastly, physician and society. But as time goes on, narrative medicine has proven to be a tool not only for the physician, but for the patient as well. Narrative has given a unique perspective of the patient experience, especially through a child’s eyes. The experience is often more nuanced than regimented care teams 5 would care to think. Most patients simply want a grasp on “normal” life and any efforts to humanize their sterile treatment phases go a long way. Healthcare teams in the field of pediatrics do this expertly. They practice tactics to get to know their patients and how to make them feel safe. Children’s hospitals become homes with jungle-themed walls, MRI machines disguised as rocket ships, nurses that also act as hairdressers. Pediatric healthcare providers typically understand their scope of practice is expanded to include the patient’s family, recognized as a vital part of recovery. These traits should be extended to all specialties and practices, but they are particularly relevant to our study. Though pediatrics has made encouraging strides, there is still much to be learned. Pain in general has been a mysterious topic among all populations, but with children, it can be even more confusing. In a system so dependent on language, the description of pain remains elusive (Buchbinder, 2015) .Ongoing research is currently exploring several innovative methodologies in which pain can be “configured, managed, explained, and even experienced in deeply relational ways” (Buchbinder, 2015). Half the battle is extracting stories from these young patients in unique and meaningful ways. This has been accomplished in a myriad of ways: coloring apps that highlighted specific parts of the body which may have experienced pain (Linder, et al., 2021), retrospective inquiries of adults who dealt with a pediatric cancer diagnosis (Demopoulos, 2013), in-hospital reports of particular “sources of bother” to children (Linder & Seitz, 2017), narratives that isolated specific, destructive themes of various treatments (Meldrum, Tsao, & Zeltzer, 2009), using imaginative stories to deal with “bad” emotions (Barbieri, Bennati, Capretto, Ghinelli, & Vecchi, 2016), or even focusing on the “disnarrated” of parents’ experiences, or those things parents chose not to relate regarding their child’s treatment 6 (Vindrola-Padros & Brage, 2017). A common theme throughout these studies is the inclusion of patient, doctor, and family in dealing with these difficult diagnoses. The hope is that, through narrative, researchers will be able to interpret the findings and further implement them in improving care. Physicians and patients across the world have demonstrated that narrative medicine indeed enriches the patient-physician relationship, the actual care of the patient, and the education of doctors (Arntfield, Slesar, Dickson, & Charon, 2013; Banfi, et al., 2018; DasGupta, 2017). Some of these findings include medical students reporting narrative medicine to be “important and effective” (Arntfield, Slesar, Dickson, & Charon, 2013), patients with chronic conditions expressing greater trust in their doctors’ decisions (Banfi, et al., 2018) and doctors correctly diagnosing ailments quicker due to their greater focus and concern (DasGupta, 2017). Overall, narrative medicine challenges the medical doctor to rise above their profession and become a fellow human being. And it challenges patients and their allies to confront their feelings towards illness and trust the white coat sitting across the table. Through this unique expression the original intent of medicine, or a love for and preservation of life, is manifest. Purpose This project incorporated the relatively new methodology of narrative medicine with a twist for kids. The overall goal was to extract individual narratives of three children receiving treatment for cancer, as related through their entries in a game-based symptom reporting app. The hope was that these narratives would highlight the unique (and also shared) experiences of each child that could perhaps better inform physicians 7 on the nuances of pediatric cancer care. This study worked with the distinct language of children, a language often seen as incongruent to terms and styles of adult vocabulary. This chasm is exacerbated by the trauma and treatments of cancer. Through different mediums of words and art, we, as collaborators of this study, sought to give voice to patients who may not be able to easily express their feelings. Not only does creating narratives aid the young patient in dealing with the physiological ailments, but, just as important, the psychological tolls of illness as well. The following findings suggest that adding narrative to a patient’s medical record may also allow pediatric doctors to more accurately diagnose problems and support the patient and their families. METHODS For this project, I used data from Dr. Linder’s recently completed study, funded by the National Institute of Nursing Research. This larger study engaged children receiving cancer treatment and pediatric oncology clinicians in co-developing a tabletbased app, “Color Me Healthy.” This app allowed elementary school-age children (6-12 years of age) with cancer to provide a daily report of their cancer-related symptoms, respond to questions about their day, track wellness-related goals, write in a diary, and draw a picture. The hope was that by allowing children to interpret and reflect on their experiences through various mediums, a clearer picture of their overall treatment-related experiences would emerge. The study concluded with a trial of the feasibility and acceptability of the app in which children were asked to use the app to record their symptoms for at least five days between clinical visits. This thesis uses data that were 8 self-reported by three children who used the app during this feasibility and acceptability trial. Study Setting and Sample The study received approval from the Institutional Review Board of the University of Utah. Parents of the study participants gave their written consent and the children selected also assented to participate. The study setting was Primary Children’s Hospital, a free-standing children’s hospital in Salt Lake City, Utah. Primary Children’s serves the largest geographic region of any children’s hospital in the United States. Children were recruited from the inpatient and outpatient settings of the Cancer Transplant Service. Children who were receiving treatment for a diagnosis of cancer, were between 612 years of age, and had completed at least one cycle of chemotherapy were eligible to participate. Children also were required to speak and understand English and be physically and cognitively able to use the app. Twenty children were enrolled in the study, and 19 completed the study. Children participating in the study received a tablet computer containing the app and then were requested to use the app for at least five days between chemotherapy treatments. For the purpose of this thesis, three patients who varied in diagnosis, gender, age, and total days spent using the app were selected from the completed study. The three separate cancer diagnoses represent the most common pediatric cancer types. 9 Color Me Healthy App Within the app, children had the opportunity to explore through six various pages and screens. On the home page, the patient could personalize their “room” background, window, and objects on the bookshelf. This is also where the patient could claim stickers as a reward for logging in each day and completing each of the tasks within the app. Children decorated this page with as many (or as few) of the stickers they earned while using the app. Children could change the features on this page as often as he/she wanted. Figure 1: Customized home page sample of the Color Me Healthy app 10 Another page served as a record for daily wellness goals. Content for the goals was suggested by patients and interdisciplinary pediatric oncology healthcare team members during the app’s development. Patients wrote in a diary on the left side of this page and could review past entries. Moods were represented by five different emojis representing such states as “Happy” “Sad” or “Angry.” Different options for goals were also given. Check marks could be placed next to “Take a bath or shower” “Brush your teeth 2 times” “Take your medicine” “Go for a walk” “Draw a picture” and then two options to “Write in a goal” as free text responses. Figure 4: A sample of the diary entry page 12 The purpose of the app is encapsulated in the general symptom report page. The patient had a checklist of general symptoms and space for short free response. Categories of symptoms included pain, tiredness/fatigue, sick tummy/nausea, not feeling well, not sleeping well, coughing, and feeling dizzy. For each symptom, patients were asked to report the level of severity and the level of bother. These levels were categorized as little, medium, or a lot. The patient then selected areas of the body to localize and rate symptoms in Figure 5: A sample of the general symptom report page more detail. Children and parents could also review line graph trends based on the last five or thirty days of various symptoms reported and goals kept. Figure 6: A sample of the symptom tracking chart 13 Data Management and Narrative Analysis Once the data were received, content was extracted from the screenshots and the narrative analysis began. In qualitative research, narrative analysis means to “interpret stories that are told within the context of research and/or are shared in everyday life” (Allen, 2017). Thus, the task was to tell these children’s stories in the context of their daily life as a cancer patient. Data sources for each narrative included quantitative and qualitative data derived from original .json, .png, and .jpeg files. App-generated data included in these files were symptom reports, responses to free text questions, personal avatars, diary entries, and drawings. Outlines for each patient were generated in Excel spreadsheets, which included three distinct categories: “Diary and Goals,” “Symptoms” and “Daily Questions.” In the first page of “Diary and Goals,” each patient was separated as Patient 1, Patient 2, and Patient 3, with the corresponding demographic information of gender, age, and diagnosis. Each patients’ days using the app corresponded with their diary text for that date, reported mood, free-texted goals, and completed activities. Any category left unreported on the app was marked as a blank on the spreadsheet. Activities completed that were marked as “Yes” were highlighted. The next page was where patients’ symptoms were compiled and recoded. Again, separated by patient information, each child was tracked on reported symptoms. For each symptom, severity and bother were also rated. Because many days went without symptoms reported, those with answers were highlighted. If children opted to indicate on their avatar which part of their body hurt, these body parts were also highlighted. The 14 symptoms located to that area of the body and their associated levels of severity and bother were also recorded. The last page, “Daily Questions,” was to keep track of which questions were answered and how. Children were asked to check a box if they went to school, however, none of the patients in this study self-reported school attendance. These answers were in the form of free text boxes. Questions included: “How are you feeling today?” “What is the best thing about today?” “What is bothering you the most today?” “Did anything else make you feel sick today?” Free text responses to these questions were extracted as written by the patients and entered into the Excel page. Using the completed data from the three separate Excel sheets, summaries of each individual’s daily experience were written in Word. Any drawings made on the app were also included in these summaries to provide a complete description of their days. RESULTS Demographics Patient 1 Patient 2 Patient 3 Gender Female Male Male Age 11 years 11 years 6 years Diagnosis Brain tumor Lymphoma Leukemia Total Days of App Use 8 days 11 days 7 days 15 Patient 1 Patient 1 was an 11-year-old female who had been diagnosed with an optic nerve pathway glioma 17 months prior to enrolling in this study. She was receiving ambulatory treatments every two weeks in the hospital clinic. Patient 1 described herself as a fan of koalas and massaman curry. Her favorite color was blue and her least favorite thing was when she didn’t see her favorite doctor. She loved to play outside and thought of neighborhood games playing “Fugitive,” an epic hide-and-go-seek game in which kids scurry behind bushes and trees from drive-by search parties in darkened streets. For a total of eight nonconsecutive days, Patient 1 described her experience. Her first day of app use coincided with Figure 7: All drawings in this section are from Patient 1’s original app data a day of cancer-directed treatment and proved to be one of the most difficult. Her diary text reads “i am very tired. my head hurtsss” and other symptoms free-texted as “the evastin.” (Avastin is a medication given as IV infusion for treatment of her brain tumor.) On day one, Patient 1 reported mild symptoms of pain, a rash, and sick tummy with mild bother, but, consistent with her diary entry, a severe onset of fatigue. When prompted with what was most bothersome, she replied, “my head” and circled the area on her avatar. Still, Patient 1 described herself as feeling “goodish” and selected the “Happy” emoji for her mood. She checked off taking her medicine and drawing pictures as her daily activities and the best thing about her day was “watching tv.” 16 On day two at home, Patient 1 appeared much more cheerful, with the completion of multiple daily goals: taking a bath/shower, brushing her teeth twice, taking medicine, and drawing a picture. Her journal entry appears jubilant in celebration: “today is the day after my dads birthday. we get ti eat chocolate cake! 🍩🍰🍫” With only mild fatigue and dizziness, Patient 1 reported “nothing so far” as bothersome, feeling “good” and the highlight as “we get to eat cake.” “i feel good today” was the banner for day three, with no other symptoms reported other than feeling “tired.” She reported taking her medicine and drawing a picture. Her tiredness was perhaps in part due to the subject of her entry, riddled with typos: “my friend csme iver.” Three consecutive days later, on her fourth reported day, a voice perhaps tinged with giddy surprise proclaimed “today i didnt feel sick at all!” When asked how she was feeling today, she wrote, “good. I havbt felt sick all week, so i havent had to checj in!” She reported “we went on a fun walk” as her best thing, a sunny-colored painting accompanying her posts. Though a happy day, Patient 1 described some mild symptoms of fatigue and not sleeping well, contributing to a moderate sense of bother. On her avatar, she circled the chest area as painful without further explanation. The next day shed some light on her pain, as another image of blaring red circling her chest appeared on the avatar. She described a sense of bother in “my port hurts a little,” with the chest area noted with mild pain, moderate fatigue, and a sense of not feeling well. However, Patient 1’s resilience shines through in her diary entry: “today has been gkood. 17 around 9 pmish my port sgarted to hurt.” Despite that, she reported her mood as “Happy,” she felt “great!” today, and her high point was “swimming.” Day six was a self-reported no-symptom-day, with “nothing” bothersome, feeling “good” and no other symptoms reported. She completed several activities, including going for a walk and drawing a picture, this time of a rose. Her favorite part of the day was “we watched ferdinand.” Her mood was again “Happy” on day seven, with no symptoms or bother reported, feeling “good,” and her highlight being “i got togo shipng.” However, her diary entry states, “my nose was weired today and it made my eye funky” with no other clues given. On her last day utilizing the app, she reported no symptoms or bother, feeling “good,” and completing her routine activities. A block drawing of clinical blue accompanies her diary statement “today i was late for the infusion clinic.” She reported her best thing that day as “i got to see some funny videos😃” Patient 2 At the time of this study, Patient 2 was an 11-year-old male and living with a diagnosis of lymphoma for two months. This boy was initially receiving inpatient treatment, but was discharged to home, as reflected in his diary entries. He took his tablet home with him to continue this study and returned to the hospital clinic for treatment every three weeks. For a total of 11 nonconsecutive days, his entries gave a glimpse into his everyday life and coping mechanisms. 18 Patient 2’s biography illustrated characteristics generally presumed as typical to his age and gender: his favorite color red, the shark is his favorite animal. His short descriptors reflect his activities. His favorite thing to do is “video games” and his favorite game is “Cuphead,” an Xbox game. “The line on the TV” settled for the thing that most bothered him. Many of his entries revolve around video game playing, including his day four entry of “i figured out how to use sniper ammo for rocket launchers” and a source of bother being that he “got placed 2nd in duos.” On days six, nine, and ten he reports sources of bother from his gaming (“it wont evolve”) as well as triumphs gained from these alternative realities (“i got a shiny magikarp” “shiny zubat” “i played a 5 player match in league” and “i got [my friend] into zombsroyale.io”). Patient 2 solidified his hope to leave for home in his diary entry for day one: “I am still in the hospital but i will be out tomorrow.” Though he was able to go for a walk, draw a picture and play “with my cousins,” he reported many symptoms. He reported mild nausea and not sleeping well with mild bother, as well as not feeling well and moderately fatigued. His avatar showed a red circle on his stomach with associated symptoms of rash, itching, pain, bruising, and a feeling of numbness and tingling. His greatest source of bother was “Having to be here” and he reported feeling “Fine.” Day two started out much better for the 11-year old because “I had a burger for brekfast.” He reported taking a bath or shower, brushing his teeth, taking his medicine, and going for a walk. Among symptoms of mild pain, fatigue, nausea, and a persistent p;roblem with sleeping well, Patient 2 reported “pills” as bothersome. Despite his 19 continuing symptoms, he felt “greate” and reported a highlight of “Playing with my cuz.” Patient 2’s personality and humor shine through in day three, the headline blaring “GOTTA SWEEP SWEEP SWEEP,” referencing a video game character, along with silly pictures of unknown creatures. He checked off every activity possible within the app, with mild pain as his sole symptom. He described the most bothersome item of his day as “That off center pepperoni,” and the best part was “my cousins the sequel.” Though he reported feeling “fine” today, when asked if any other symptoms bothered him, he simply wrote “Cancer.” Day four was a high-symptom-day with mild pain, nausea, feeling dizzy, and not sleeping well. He also reported severe bother with moderate fatigue and mild coughing. Patient 2 continued to complete his daily tasks, and playing in “da splash pad” was the best part of his day. When asked how he was feeling today, he responded only with the word “feelings.” Day five was the first day in which Patient 2 described his mood as “Happy,” perhaps in part due to his post “I shaved my cousin’s head today.” Though this was his favorite part of the day and he felt “Swell,” Patient 2 continued to report a high volume of symptoms. These included a bothersome “headache”, mild pain with severe bother, mild fatigue, and mild nausea, perhaps due to “being in the car for an hour.” Day six reported no new symptoms, only the persistent bother of “cancer.” On the seventh day of app use, Patient 2 reported no specific symptoms, only citing “the neupegen” and “the neupegen shot” as bothersome. (Neupogen is a 20 medication given via subcutaneous injection to boost white blood cell recovery.) Besides the blaring reminder of cancer treatment, Patient 2 had a day typical to most boys. His mood was “Happy” and he “played wif ma friends.” He had his favorite “lasagna” and generally felt “good.” Day seven blurred into day eight, with no other information given other than the annoying “neuopogen.” He felt “Great” and exclaimed his highlight in all caps, “PIZZA!!!!!” Friends and games continued to be important to Patient 2’s everyday life, as highlights and lowlights and days nine and ten were, respectively, “friends” and “that they went home.” Food was also an important part of his experience, with “burgers” as a single diary entry and bothersome listed as “We’re outta pickles.” On day ten he was feeling “hungry.” It is interesting to note that on these days he did not report any specific symptoms and his mood was “Happy.” On his last day of utilizing the app, Patient 2 completed his usual activities of bathing, taking medicine, brushing his teeth, going for a walk, and drawing a picture. He reported mild nausea with severe bother, but still felt “good” and found comfort in the declaration, “ant man and wasp is a good movie.” Patient 3 The last narrative was told by a six-year-old male with acute lymphoblastic leukemia (ALL). At the time of the study, it had been three months since he was initially diagnosed, and he came in for treatment at the hospital every ten days as an ambulatory 21 outpatient. With seven days of nonconsecutive use of the tablet, Patient 3 gives a distinct picture of his experience as a cancer patient. The “autobiography” of Patient 3 elicits the childhood innocence often possessed by six-year-olds. Jenga is his favorite game, a sushi “crunch roll” his food of choice. He loves the color blue and alligators. When prompted to describe what bugs him the most, he thinks of “dogs licking my face.” His favorite thing to do, “dig dirt with trucks,” brings pictures of sunnier days without hospital walls. As expected with his young age, Patient 3’s written diaries are sparse, but a picture was drawn every day of app use. Day one had no reporting of goals, symptoms, or answers to daily questions. Day two was described only by severe symptoms accompanied by roughly scribbled, red circles indicating where the pain was most intense. He reported moderate pain in his stomach and right arm, severe fatigue with severe bother, and severe nausea that was highly distressing. Day three seemed to come down from the climax. This day his self-reported personal goal was to “eat healthy.” He had an active day of taking a bath, swallowing his medicine, brushing his teeth, going for a walk, and drawing a picture. He reported mild pain in his stomach, right arm, and head, and reported a general feeling of not feeling well. His picture of the day was a screen covered in gray. The best part of Patient 3’s day was “taking my boat in my bath.” A picture drawn of a slow, blue turtle characterizes day four, with the diary entry: “my port hurts a little.” Though he reports moderate pain with a little bother, as well as 22 the persistent pain in his stomach, right arm, and head, his slow-turtle day turns into an active one. He checks off on his daily activities, including a walk, and the reiterated personal goal to “eat healthy.” He says he feels “good,” especially with the arrival of a friend to play. Day five is the first day Patient 3 describes himself as “happy,” perhaps in part because his day started off with a “witches breakfast.” His journal entry states that he is “excited for halloween.” A colorful skull adorns his daily drawing in preparation for the holiday. His personal goal to “eat fruit and veggies” helps him feel “good” today. No symptoms are reported, and he checks off his daily activities reportedly without event. Day six is again a “happy” mood day because of his “fun day with cousins.” He draws two pictures -- one of a monster with gaping eyes and another of a one-tree landscape with several shades of green grass. His personal goal continues with “eat good” and he reports no symptoms with a full day of listed activities. Patient 3’s last day of reporting includes two people - one playmate and one reading buddy. His diary states “read chapter 2 of my new book” with this person, and the best thing was “[my friend] came over.” Though he again listed a full day of activities, he reported mild pain, perhaps in relation to a bothersome “port poke.” However, he reported to feel “good” and his drawing of the day resembles a dancing stick-figure. 23 Narrative Summary and the Emergence of Themes Overall, these three narratives give a distinct picture of a day in the life of a pediatric cancer patient. A total of 25 days across the three cases were analyzed to extract narratives and explore commonalities and differences. Patient 1 and 2 were similar in age and had more written content to analyze, but Patient 3 reported the most symptoms, despite his fewer days of app use. Patient 3 was also the only participant of the three to articulate personal goals. Chosen from the three most common cancer diagnoses in children, one may recognize the unique challenges each disease may present. However, the overwhelming evidence seemed to culminate in the shared experiences of suffering and celebration for all three patients. Important themes throughout these narratives were identified as the persistence of symptoms; the importance of family and friends; the incorporation of play, humor, and celebration; and emotional resilience. Persistence of Symptoms Of the many important themes that surfaced in these patient narratives, the ongoing consistency of symptoms in the outpatient setting is informative. In each child’s experience, almost half (if not more) of the days reported included at least one troublesome symptom (Patient 1 reported symptoms 4 of 8 days, Patient 2 reported 5 of 12 days, Patient 3 reported 4 of 5 days). Across the board, most often the symptom described was pain. Tiredness and fatigue were also reported by all three patients for a combined nine days, and nausea came close behind with a total of seven days. Patients were able to display on the app avatar’s body exactly where they were feeling any symptom. Patient 1 often colored around her head and chest to indicate symptoms coined 24 as mild. Though Patient 2 only drew once around his stomach, he highlighted all the symptoms associated with the discomfort: rash, itching, pain, bruising, and numbness, all to a low degree except for “severe” bruising. On three of his five total days, Patient 3 circled his avatar’s stomach, right arm, and head, but gave no indication to the scale of discomfort. Patients were also given a free text response in their symptom checklist for any “other symptoms” that they experienced but were not included on the list. On her first day home, Patient 1 wrote “the evastin” as her other symptom, and she described “my head” as bothersome. On her fifth day, she reported “my port hurts a little” under the bothersome category. When prompted about other symptoms, Patient 2 replied “cancer” twice and “Neupogen” (or “the neupegen”) twice. As bothersome, on his first day Patient 2 complained of “Having to be here” and subsequent entries as “pills” “my headache” “the neupegen shot” “Neuopogen” and “nausea” on separate days. Patient 3 did not report any other symptoms, except on his last day he listed “port poke” as bothersome. Though not an explicit prompt, patients also wrote about their symptoms in their general diary texts. On her first day, Patient 1 described, “i am very tired. my head hurtsss” and on her fifth day, “today has been gkood. around 9 pmish my port sgarted to hurt.” She reported a strange experience on day seven in that “my nose was weired today and it made my eye funky”. Patient 2’s diary entries were full of non-cancer-related encounters. Patient 3 characterized his third day as, “my port hurts a little.” Not only is this data valuable for parents as they become the informal physicians at home, but the clinical team can glean vital information about the patient’s tolerance of certain drugs, detect any mood changes, and see how the child is adapting to life at home. 25 Often, the subjective symptoms that can only be described by the patient herself, can show an enhanced view of the complete cancer experience. Further, it is important to note that when speaking of the “clinical team,” this includes not only the oncologists and registered nurses, but the social workers, occupational therapists, nutritionists, child life specialists, palliative care specialists, chaplains, patient care technicians, and others who play a direct role in the child’s success as a patient. Importance of Family and Friends The intersectionality of family and celebration often came into play throughout the narratives. The defining moment of one of Patient 1’s days was “today is the day after my dads birthday. we get ti eat chocolate cake! ” On a day when she felt tired, she found the best thing in that her “friend csme iver.” Even hospital staff became like friends, noting that one day in the infusion clinic she missed seeing her favorite doctor. Patient 2 mentioned family or friends 8 out of his 11 reported days. One day he said, “I shaved my cousin’s head today” and another day he “played wif ma friends.” For three straight days, Patient 2 played video games, swam, and ate food with his cousins. One day his crowning achievement was getting a friend into a video game. Patient 3 often characterized his days as rife with symptoms, but a highlight on a “port poke” day was reading a book with someone. It was on a day with no symptoms that he could fully appreciate a day when someone familiar came over. Even on days with moderate pain in his stomach, arm, and head, someone to pass the time with was treasured. Across these three narratives, what may be equally important is the unnarrated, or the background scenes of caregiving that is taken on by mothers and fathers, grandparents, and neighbors. Incorporation of Play, Humor, and Celebration No theme persistently shed light on the patients’ humanness – “kidness” if you will – quite like those diary entries riddled with humor, play, and celebration. The exclamation points, caps lock, and emotive, childlike language paint just how critical these everyday successes are for pediatric cancer patients. On day three, Patient 1 reported, “i feel good today” – a stark contrast from two days earlier when she complained of a severe headache. The next day continued to brighten with, “today i didnt feel sick at all!”, with a reiteration two days later of the same: “today i didnt feel sick at all!” Though Patient 1 did not always indicate meeting all her goals, she always made time for a fun activity. The only other goal she met all seven days was taking her medicine. Patient 1 was effusive with her exclamation-pointed reports and one could surmise a note of surprise to her celebratory moods. Maintaining some semblance of a kid’s life was no doubt important to Patient 1, as her best things were “watching tv”, eating cake, when her “friend csme iver”, going “on a fun walk”, “swimming”, watching movies and “funny videos” and one day, “i got togo shipng”. Of the three patients, Patient 2 played with humor the most. His witty personality shone through his dietary choices (“I had a burger for brekfast” and one highlight was simply titled: “burgers”) and his many aforementioned odes to video games. His comments on superhero movies mirrored his superhero actions in play. Every day but 27 one, his daily physical activities were accompanied by fun. On some days the only bother he thought of was placing “2nd in duos”, that “We’re outta pickles” and “that off center pepperoni.” Patient 2 continued with his off-centered humor in responding to how he was feeling by saying “feelings” one day, “swell” another day, “greate”, and just plain old “hungry” on another. One day he simply said, “Look at my symptoms” to know how he was feeling, with a total of zero bothersome symptoms reported. Patient 2’s highlights often revolved around play and food. He referred to “playing with my cousins” three days in a row, “da splash pad”, and the great accomplishment of getting a friend “into zombsroyale.io.” Other peaks included “lasagna” and “PIZZA!!!!!” Clearly, though cancer may have dimmed some of his regular routines, it did not extinguish his enthusiasm for aspects of life already well-loved. Though Patient 3 had sparser data to draw from, he also had different ideas of play, like “dig[ging] dirt with trucks.” Some of his highlights were friends coming over, “taking my boat in my bath” and prepping for Halloween celebrations like a “witches breakfast.” Over half of his days, Patient 3 described activities of going for a walk and drawing pictures, and his diaries are replete with his artistic imagination. Even if Patient 3 didn’t always report his symptoms, he utilized the app every day to draw pictures, sometimes multiple in a day. Emotional Resilience Perhaps the most striking discovery of the separate narratives was the unity in overcoming a foreign cancer with the bright spirits of childhood. Despite the happenings of being late to the infusion clinic, experiencing rare symptoms, her port hurting, feeling 28 tired, and enduring headaches, Patient 1 reported she felt “good” or had a happy mood 100% of her days. One of Patient 2’s day culminated in feeling pain, fatigue, nausea, and insomnia and still he reported feeling “greate.” Another high-symptom day did not deter him for completing all his listed activities. And the dreaded Neupogen injection was met with “good” and “Great” moods. Patient 3 reported feeling “good” and “Happy” more than half of his days, even when those days coincided with pain and discomfort. If anything, the narratives teach us that discomfort can coexist with happiness, and difficulties can be met by grins. DISCUSSION What our project has gathered is the need to address wounds lurking beneath the surface, and the smaller triumphs and successes that may go unnoticed in an oncology unit. Narrative is a way to stimulate growth and healing in physical aspects, but also psychological, spiritual, emotional ways that could prove more enduring. And this methodology of research has only scratched the surface. Though the door to revealing patient experience can start with the simple question of how they are feeling, the depth in responses and true insight into their functionality resulted in questions that went one step further: “What is the best thing about your day?” and “What is bothering you the most today?” These questions illuminated a complex child grappling with the reality of a diagnosis, not just the mechanical responses of “good” or “fine.” The use of a few, simple questions produces data that far outweighs a paper checklist of symptoms. Previous research has indicated that while cancer can be devastating to the life of a child, there is also the potential for “posttraumatic growth” (Wilson, et al., 2016). 29 Interestingly, posttraumatic growth is positively correlated with young patients who also demonstrate posttraumatic stress. The negative can influence the positive. Other contributions to posttraumatic growth include “stronger family and oncologist relationships” and parents’ positive coping mechanisms (Wilson, et al., 2016). Reflection is also associated with posttraumatic growth (Stockton, Hunt, & Joseph, 2011). Narrative medicine not only promotes reflection for children, but also for families and clinicians. Narrative medicine in the form of this symptom-tracking app allows all involved in the cancer journey to appreciate the good and bad days, and how to foster an environment that encourages positive growth through treatment, remission, and beyond. For the clinician studying these narratives, a physician could see the unique experience of Patient 1, and how she valued her good days as a happy deviation and the importance of her care team. The nurse attending Patient 2 could appreciate his sarcastic humor and his love for a variety of foods. And for the child life specialist visiting Patient 3 during hospital stays, they could incorporate the anticipation of special days and including interactive toys as part of his care plan. Narratives derived from the child’s own voice allow treatments to be curated to their utmost benefit. The root of narrative medicine has spread into various mediums currently being investigated by researchers in the pediatric field. These include interactive and digital storytelling for patients and families (Wilson, Hutson, & Wyatt, 2015), using writing workshops to evaluate pediatric oncology residents (Birigwa, Khedagi, & Katz, 2017), and employing imaginative play to make sense of diagnoses for patients (Cattanach & Webster, 2017) . However, many studies focus on the role of physician or other members of the healthcare team, rather than focusing on the patients themselves. Even fewer rely 30 on the raw narratives from children, untouched by adult analysis. This project is unique in that the results are not presented in a quantitative analysis, calculating the well-being of patients in numbers. The results are not even in qualitative themes interpreted by researchers. What this study produces and focuses is on is the untarnished view of kids with cancer, told by kids in their sometimes confusing and hilarious vernacular. Their pain is felt through pictures and diary entries, and their strength is reflected in their goals and moods. This study reveals just how disruptive cancer can be to a kid’s normal, and how these children have adapted their cancer life as the “new normal.” CONCLUSION Limitations for this Project The various limitations this project experienced must be noted. First, the results were based on three short narratives from a limited period of time (from 7 to 11 total reported days). Second, though we see it as a strength, the data did rely on self-reporting by children operating in their known vernacular. The three narratives chosen out of the larger study by Dr. Linder offered the most data to support the construction of these narratives. Out of a larger study and with the same app, unearthing narratives from each participant was beyond the scope of this thesis project. Third, because only three narratives were chosen, the sample size was very small and not very diverse. All three patients were Caucasians living in Utah. Two resided 30-45 minutes from the hospital setting, and one patient lived a few hours’ drive from Salt Lake City. We suspect that diverse and valuable additions to narratives will come to light as increased diversity of 31 race, age, diagnosis, residence, socioeconomic factors, and other variables will be displayed. Implications for Further Research Narrative medicine has an immense potential for integration into all disciplines, but especially in healthcare. Coming from a public health background, I value the narrative behind the social determinants surrounding a person’s condition. Social determinants are defined as “conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (Office of Disease Prevention and Health Promotion, 2011). Narrative helps to clear away the bogged-down interpretations of graphs, symptoms, and dosages, and focuses on the human wholeness of the patient. Interventions in communities, health policy, and coalition efforts start with individual narratives. In this project, we highlighted the benefit narrative medicine has for patients, specifically children. . From this project alone, many studies can continue to expand the current scope of the thesis to fit the needs of other demographics. As pediatric oncology may know best, the child is not the only one affected by cancer. Narrative medicine can be a helpful and vital tool for patients, siblings, parents, and any of those seeking to understand and travel the story of illness with their loved one. We see the need especially for patients from an immigrant background to pursue narrative to make sense of their own treatment in a foreign system, and as a means for clinicians to understand cultural values and how those intersect with their care. We hope this app can be something 32 introduced to and embraced by all types of patients, and not only in the oncology unit. And finally, we hope to see clinicians – including physicians, nurses, social workers, and others – utilizing similar and simple narrative methods to track their associations with their patients. This can be in the form of a general journal describing the many patient interactions healthcare team members may have, as time constraints may not make individual patient narratives possible. Comparing the notes of patients and professional caregivers may give us better insight on how to address and treat disease in the pediatric field. In its inception, narrative medicine was prescribed for the physician as a way to prevent burnout and restore empathy in the doctor-patient relationship. However, narrative medicine is cohesive to social work assessments, community health interventions, occupational therapy encounters, nurse-to-patient interactions, and any other confrontation between patient, caretaker, and illness. Interpretation of narrative can vary in meaningful ways depending on the clinical team member’s perception and unique role in the patient’s care. And as each member takes a glimpse into the raw, human aspects of the patient’s story, value is added to the patient’s treatment. If positive physical health outcomes are all medicine cares about, narrative medicine is a useful tool. 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