Childhood Cancer in the Cinema

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Childhood Cancer in the Cinema Yale University EliScholar – A Digital Platform for Scholarly Publishing at Yale Yale Medicine Thesis Digital Library School of Medicine January 2013 Childhood Cancer In The ineC ma: How The Celluloid Mirror Reflects Psychosocial Care Jovana Pavisic Follow this and additional works at: http://elischolar.library.yale.edu/ymtdl Recommended Citation Pavisic, Jovana, "Childhood Cancer In The ineC ma: How The eC lluloid Mirror Reflects Psychosocial Care" (2013). Yale Medicine Thesis Digital Library. 1829. http://elischolar.library.yale.edu/ymtdl/1829 This Open Access Thesis is brought to you for free and open access by the School of Medicine at EliScholar – A Digital Platform for Scholarly Publishing at Yale. It has been accepted for inclusion in Yale Medicine Thesis Digital Library by an authorized administrator of EliScholar – A Digital Platform for Scholarly Publishing at Yale. For more information, please contact [email protected]. CHILDHOOD CANCER IN THE CINEMA: HOW THE CELLULOID MIRROR REFLECTS PSYCHOSOCIAL CARE A Thesis Submitted to the Yale University School of Medicine In Partial Fulfillment of the Requirements for the Degree of Doctor of Medicine By Jovana Pavisic 2013 ABSTRACT CHILDHOOD CANCER IN THE CINEMA: HOW THE CELLULOID MIRROR REFLECTS PSYCHOSOCIAL CARE. Jovana Pavisica, Julie Chiltona, Garry Walterb, Nerissa L. Sohb, and Andrés S. Martina. a Child Study Center, Yale University School of Medicine, New Haven, CT. bThe University of Sydney Medical School, Sydney, Australia. Film is a powerful medium for sharing illness narratives, and can exert a significant influence on public medical discourse. The childhood cancer narrative has more recently emerged on the screen, and these images have yet to be analyzed. This study aims to evaluate the childhood cancer experience in commercially produced, readily available films with a character with childhood cancer, with a particular focus on psychosocial care. Twenty-nine films were reviewed, using quantitative and qualitative content analysis to identify the medical and psychosocial characteristics of the cinematic childhood cancer experience. Psychosocial support was rated on a five-point scale (0-4) based on the availability and efficacy of support characters in the categories of non-professional internal (e.g. parent), non-professional external (e.g. friend), professional medical (e.g. oncologist), and professional psychosocial (e.g. social worker) supports. Main themes were identified and described, and relevant scenes were extracted into an educational DVD. Film depicts an unrealistic, bleak picture of childhood cancer, with a 66% mortality rate among the 35 characters evaluated. A range of psychosocial stressors are reflected that are consistent with those experienced in reality. Psychosocial support is limited to resources already available to families prior to the cancer diagnosis: the average support rating across all 29 films is 2.4 for non-professional internal and external supports, 1.6 for professional medical supports, and 0.3 for professional psychosocial supports. Seven themes emerged on the screen: disruption, social impact, psychological impact, physical toll, struggle/war/fight, coping, and barren landscape. Images of an isolated family courageously battling cancer alone with limited support from a treatment team solely dedicated to medical care is emphasized. In conclusion, cinema highlights the struggle between life and death in pediatric cancer, but minimizes the importance of the psychosocial dimension of care, which can perpetuate the stigma that exists around psychosocial interventions. These films, and the included DVD, can be used to encourage discussion among medical providers about how to optimize psychosocial care in pediatric oncology so that such care is not abandoned in actual practice as it is, for entertainment purposes, on the screen. ACKNOWLEDGEMENTS First, I would like to thank my mentor, Dr. Andrés Martin, who introduced me to the importance of psychosocial care in pediatric oncology early on in medical school, and forever enriched my understanding of the complexity of the cancer illness experience for children and families. This thesis would not have been possible without his creativity, encouragement, and guidance. I would also like to thank Dr. Julie Chilton, who warmly welcomed me to the project, and whose insights were instrumental to the final work. I dearly value the team discussions and movie viewings that expanded my ability to look at data not just from a quantitative lens, but through a qualitative and multifaceted approach. My gratitude extends to Dr. Garry Walter at The University of Sydney Medical School, whose work on ECT in cinema served as a model for this study, and who provided meaningful ideas and feedback for my thesis. I would also like to thank his research officer, Dr. Nerissa Soh, who dedicated considerable time to the movie search process. I am additionally grateful to Dr. Gretchen Berland for her initial guidance on developing a research design for a difficult and unique topic, and for her thoughtful and detailed review of my thesis. I am indebted to the Yale University School of Medicine Office of Student Research for their support to explore diverse research interests during medical school, and for their financial generosity through the Short-term Research Fellowship Award. Lastly, I owe my deepest gratitude to my friends and family who have unwaveringly supported me and my passion for pediatric oncology throughout medical school. My parents and brother willingly watched emotionally taxing movies about children with cancer with me, and enthusiastically engaged in conversations about the topic. Their encouragement throughout the writing process was invaluable. My wonderful friends also took time away from their busy lives to watch films with me and provide much-needed technological advice. I am deeply grateful to have such caring, dedicated, and intelligent friends and family. Certain things leave you in your life and certain things stay with you. And that’s why we’re all interested in movies-those ones that make you feel, you still think about. Because it gave you such an emotional response, it’s actually part of your emotional make-up, in a way. - Tim Burton It’s funny how the colors of the real world only seem really real when you watch them on a screen. - Anthony Burgess Social reality is so organized that we do not routinely inquire into the meanings of illness any more than we regularly analyze the structure of our social world.[…]The biomedical system replaces [the] allegedly “soft,” therefore devalued, psychosocial concern with meanings with the scientifically “hard,” therefore overvalued, technical quest for the control of symptoms. This pernicious value transformation is a serious failing of modern medicine: it disables the healer and disempowers the chronically ill. - Arthur Kleinman in The Illness Narratives: Suffering, Healing, and the Human Condition Tomorrow you’ll experience something I’ve never known. Today you impress me. I feel so tiny before what you’ll undergo. It’s your life not mine. I respect it more than anything. - Romeo to his son with cancer in Declaration of War (2011) TABLE OF CONTENTS I. INTRODUCTION MEDICAL DISCOURSE AND THE ILLNESS NARRATIVE IN MEDIA: LOOKING IN THE CELLULOID MIRROR 1 A. Childhood Cancer Now Appropriate for the Screen 2 B. Shift from the Biomedical to the Psychosocial 4 C. How and why is Health Studied in Film? 8 D. The Meta-Narrative of Childhood Cancer 12 II. STATEMENT OF PURPOSE / HYPOTHESES / AIMS 15 III. METHODS MIXED (QUANTITATIVE AND QUALITATIVE) MEDIA CONTENT ANALYSIS 17 A. Sample 17 B. Film Analysis Instrument 19 C. Procedure 21 D. Instrument Variables: Data Collection and Analysis 23 E. Development of an Educational DVD 29 IV. RESULTS 30 A. Film Characteristics 30 B. Childhood Cancer Characters’ Characteristics 33 C. Psychosocial Stress 35 D. Psychosocial Support 37 E. Themes 42 Theme 1: Disruption 43 Theme 2: Social Impact 47 Theme 3: Psychological Impact 53 Theme 4: Physical Toll 57 Theme 5: Struggle/War/Fight 61 Theme 6: Coping 66 Theme 7: Barren Landscape 72 V. DISCUSSION 78 A. The Cinematic Childhood Cancer Narrative: Is the Celluloid Mirror Accurate? 78 B. The Celluloid Experience in the Meta-Narrative of Childhood Cancer 84 C. Using Cinemeducation to Teach Oncology Providers about Psychosocial Care 87 D. Ethical Considerations 88 E. Limitations and Future Research 90 F. Conclusion 92 VI. REFERENCES 94 VII. APPENDIX A 100 A. Film Analysis Document – Blank 100 B. Film Analysis Document – My Sister’s Keeper (2009) Example 102 C. Film Analysis Instrument – Blank 117 D. Film Analysis Instrument – My Sister’s Keeper (2009) Example 118 VIII. APPENDIX B SOURCES OF PSYCHOSOCIAL STRESS BY MOVIE 122 IX. APPENDIX C PSYCHOSOCIAL SUPPORT CHARACTERS AND THEIR RATINGS BY MOVIE 123 X. APPENDIX D THEMES AND SUBTHEMES BY MOVIE 127 1 I. INTRODUCTION MEDICAL DISCOURSE AND THE ILLNESS NARRATIVE IN MEDIA: LOOKING IN THE CELLULOID1 MIRROR As one of the most potent and substantial forms of mass communication, film creates the “ultimate waking dream experience,” inducing in viewers a dissociative state2 in which they become active participants in the narrative, free to play any role they choose in the alternate reality world created within the confines of the movie-house (3, 4). Unlike other forms of media, this unique ability of film to engage viewers in an audiovisual narrative forces viewers to become captive to the film’s visual and aural transmission of
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