Aalborg Universitet Song Creations by Children with Cancer Process and Meaning Aasgaard, Trygve Publication date: 2002 Document Version Early version, also known as pre-print Link to publication from Aalborg University Citation for published version (APA): Aasgaard, T. (2002). Song Creations by Children with Cancer: Process and Meaning. AIChE Journal General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. ? Users may download and print one copy of any publication from the public portal for the purpose of private study or research. ? You may not further distribute the material or use it for any profit-making activity or commercial gain ? You may freely distribute the URL identifying the publication in the public portal ? Take down policy If you believe that this document breaches copyright please contact us at [email protected] providing details, and we will remove access to the work immediately and investigate your claim. Downloaded from vbn.aau.dk on: December 26, 2020 SONG CREATIONS BY CHILDREN WITH CANCER PROCESS AND MEANING Abstract Trygve Aasgaard Acknowledgements and Dedication Table of Contents Thesis submitted for the degree of Doctor of Philosophy JUNE 2002 Institute of Music and Music Therapy AALBORG UNIVERSITY Abstract This project was conducted in order to learn more about the "lives" of songs created in music therapy practice and possible relationships between song creations and health aspects in the lives of young patients with malignant diseases. The shared fate of "children with cancer" is that of facing a life-threatening medical condition and a long- lasting treatment usually producing a number of unpleasant, and partly dangerous side effects. These factors, in addition to the inevitable isolation and hospitalisation influence many aspects related to the young patients' health, such as "social relationships" and "self-concepts", "hopes" and "joys", and bring about various restrictions in the patients' possibilities of action (von Plessen, 1995). The point of departure for this project was the series of songs made by five children with leukaemia, aplastic anaemia or myelodysplasia while they were in hospital. The focus of study was the collection of "life histories" of these songs (how, where, when and by whom the songs were created, developed, performed and used). Although the songs' lyrics and musical elements have also been considered, the song activities (understood as "musicking") were particularly highlighted to investigate what the songs might have meant to the child in the context of the paediatric oncology ward. "Song creation" ("song-writing") is probably the most common compositional technique in contemporary music therapy practice. Music therapy literature has, till now, said little about the songs' fate after they have once been created (made). The research perspective applied in this project was based on Egon Guba and Yvonna Lincoln's constructivist paradigm, originally discussed under the heading "naturalistic inquiry". To promote health was the primary goal of the music therapy described. Health is related to experiencing well-being and ability (Nordenfelt, 1987). This project considered several different cases in order to obtain multi-faceted study material. The research method chosen was a qualitative multiple instrumental case study. Four major sources of data were employed to construct the 19 "life histories" of the songs: documentation/archival records, interviews, observations and physical artefacts. Each patient has been presented through her or his song creations - both the i individual song history and each of the five young patients could be understood as being "a case". As this project took place in natural settings, these settings provided both a condition and a soundboard for the songs' life histories. Each song case was edited in four-column tables providing contextual information, accounts of song-related events and commentaries from interviewees and the music therapist researcher. Original lyrics and melodies have been presented (in written form), and each song has been represented with at least one audio document. The life histories of the 19 songs constituted the material for further analysis and interpretation. Three major themes (categories) were constructed and discussed: expression, achievement and pleasure. When these elements were prominent, the song activities were thought of as fostering, at least momentarily, expanded social roles for the young patients. Well-being and ability are properties related (in different proportions) to these roles. The 19 life histories of songs demonstrated the children's ability to express themselves and to communicate, their ability to create and to show others their various song related skills and, not least, their ability to have fun and to enjoy some good things in life, even if many other life aspects were rather unfavourable. When the five children were assisted to create and to perform their own songs, these activities added new elements of health to their lives and to their social environment(s) during the long and complicated process of being treated for serious blood disorders. Criteria for quality of the research project were based on trustworthiness and authenticity (Guba & Lincoln, 1998). ii Acknowledgements I gratefully acknowledge the assistance of many people in the process of conducting the research described in this thesis. I am indebted to Professor Even Ruud who twelve years ago recommended me to start developing music therapy in Norwegian institutions of cancer care/palliative care. He has always shared with me his immense knowledge of music in context - certainly no other person has influenced my basic understanding of music therapy more than Even Ruud. I would like to thank Professor David Aldridge, my Supervisor. He has not just been very helpful and supportive during the research process. Through his own extensive scientific research and literary production David Aldridge has given me continuous inspiration, and he has provided me sufficient freedom to develop my own project. I feel privileged beyond words to have had Professor Aldridge as Supervisor, and I know he will continue to be a major point of reference for me in the years to come! I am most indebted to Professor Tony Wigram who received me with open arms at Aalborg University, who arranged regular PhD courses of high standard and who allowed me the time necessary to undertake the research and write the thesis. His way of treating the PhD students with thoughtful consideration at the same time as he inspired us to work hard and keep focused - is near my own idea of the perfect academic co-ordinator. I also want to thank the small, but truly international group of PhD students, for support, critique and friendship. Our half-yearly seminaries have challenged my interest and have expanded my knowledge of music therapy research within various quantitative and qualitative traditions. Associate Professor, Lars Ole Bonde has represented my major link to the Danish "scene" also outside the field of music therapy. His well reflected musical knowledge and his very gentle manner of being have influenced me in many ways! Thanks also to a most service minded administrative staff at the Institute of Music and Music Therapy! Not many researchers have had working conditions as good as those with which I have been privileged. The administration at Oslo University College gave me the necessary iii economical funding for this project. My colleagues at The Faculty of Nursing have all been most supportive and (seemingly) interested, although my project only indirectly relates to nursing. I particularly want to thank the present Head of Research and Development, Dr. Vigdis Granum and her predecessors, Susanne Begnum, Dr. Tone Rustøen, and Dr. Dagfinn Nåden. Hillary Jacobsen has been my local, highly appreciated language consultant, and Senior Adviser Morten Reksten has produced the companion CD. The 19 songs in this study have been created in two different hospitals. I do not know if it is a co-incidence, but the medical superintendents at the paediatric oncology departments at The National Hospital of Norway and Ullevål University Hospital are both musically interested and skilled. I am grateful to Consultant in paediatric haematology/oncology, Marit Hellebostad and Chairman, Professor Sverre O. Lie for their encouragement and kind interest. Professor Lie promoted my first project proposal and supported me when I needed support. To all my interviewees: thank you for giving me your time and sharing your knowledge and reflections! I would like to acknowledge the support of colleagues internationally who have helped and/or inspired me in so many ways and who have been enhancing this thesis: Professor Svein S. Andersen and Brynjulf Stige (Norway); Cathy Durham, Owain Clarke and Dr. Gary Ansdell (England); Professor Kenneth Bruscia (USA); Beth Dun (Australia) and Deborah Salmon (Canada). My wife, Gerd Sveinall, has been a wonderful driving force in the painful process of becoming a disciplined researcher. It has been most valuable to have had a daily discussion partner with an understanding of literature and art, two disciplines related to this project. Finally, I want to say a very special thank you and acknowledgement to the nurses and hospital