Physical Activity in the Lwes of Adults with Cerebral
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PHYSICAL ACTIVITY IN THE LWES OF ADULTS WITH CEREBRAL PALSY CADEYRN JAMES GASKHNJ SUBMITTED TO SATISFY THE REQUHIEMENT FOR THE DOCTOR OF PHILOSOPHY BY RESEARCH SCHOOL OF HUMAN MOVEMENT, RECREATION AND PERFORMANCE FACULTY OF HUMAN DEVELOPMENT VICTORIA UNFV^ERSITY JULY 2005 FTS THESIS 613.710873 GAS 30001008600001 Gaskin, Cadeyrn James Physical activity in the lives of adults with cerebral palsy 11 STUDENT DECLARATION "I, Cadeym James Gaskin, declare that the PhD thesis entitled Physical Activity in the Lives of Adults with Cerebral Palsy is 111,160 words in length, exclusive of tables, appendices, and references. This thesis contains no material that has been submitted previously, in whole or in part, for the award of any other academic degree or diploma. Except where otherwise indicated, this thesis is my own work." Signature Date Ill ABSTRACT The aim of this thesis was to investigate physical activity and psychosocial functioning in adults with cerebral palsy. Four studies were conducted that incorporated a description of the relationship between these variables (Study 1) and an in-depth exploration of physical activity and psychosocial fiinctiorung in the lives of six adults with the condition (Studies 2, 3, 4). In Study 1, adults with cerebral palsy (A^= 51) completed questionnaires that included measures of physical activity, health-related quality of life (HRQL), mood states, physical self- efficacy, and social support. Although most participants (70.6%) reported that they were involved in exercise, many of the activities they performed seemed to be of low intensity, even for adults with severe cerebral palsy (e.g., hand exercises for weak hands, massage, stretching). Most of the data were substantially skewed, with many participants perfomiing minimal physical activity, and experiencing low levels of physical function, minimal role limitations, high social functioning, low levels of four negative mood states (tension-anxiety, depression-dejection, anger-hostility, confusion-bewilderment), and high social support. With the exception of the correlations between physical activity and physical functioning (rs = .45), role limitations - physical (rs = .32), vigour-activity mood state (r^ = .36), and social support from friends (rs = -.43), there were typically weak associations between physical activity and the subscales of the HRQL, mood states, physical self-efficacy, and social support measures. In light of previous research on physical activity and people with neurological conditions (e.g., multiple sclerosis, Sutherland, 2001), the weakness of these correlations was somewhat surprising. Difficulties in recmiting participants for physical activity IV intervention studies raised the question of why adults with cerebral palsy did not want to be involved in physical activity (or, at least, physical activity research). I designed three studies that focused on the lives of adults with cerebral palsy who had engaged in different levels of physical activity. In Study 2,1 examined the lives of two adults (Judy, aged 60; Alana, aged 29) who had minimal involvement in physical activity. The women had similar childhood experiences, which included having to perform difficult, and sometimes painfiil, physiotherapy; needing to wear callipers to assist their walking; lacking competence at physical activity; and being socially isolated from their classmates. These aspects of their life histories seemed to contribute to their subsequent avoidance of physical activity, which, in tum, may have adversely influenced the timing of the onset of fimctional decline. In Study 3,1 investigated the lives of two adults (Amy, aged 25; Ben, aged, 30) who were involved in physical activity. Despite both participants having punishing experiences with physical activity as children, they both were involved in, and valued, physical activity as adults. Physical activity was a means of displaying competence, delaying further functional loss, and becoming more, or remaining, socially connected. In Study 4,1 explored the lives of two adults (David, aged 27; Tim, aged, 24) who had minimal involvement in physical activity and who then participated in weight-fraining and warm-water aerobic programmes. Both participants learnt to walk, but lost this ability in early adolescence when they had to have tight hamstring muscles surgically lengthened, because they were experiencing back pains. The minimal physical activity in which they engaged during their adult fives was directed towards frying to walk again. Walking seemed to be intimately connected with psychosocial growth. The weight-training programme seemed to benefit David through providing him with another avenue for self-improvement towards his goal of attracting a life partner, a new source of narcissistic supplies, an opportunity to demonsfrate competence physically, and an experience of being treated with positive regard by the trainers and me. Tim's warm-water aerobic programme provided him with an opportunity to develop competence at swimming and at walking, and to enhance his self- esteem for these activities. The six life histories also provided evidence of how adverse social experiences negatively influence psychosocial development. The main conclusion of this thesis is that involvement in physical activity may be important for people with cerebral palsy in their endeavours to successfully face the various psychosocial challenges throughout life. Implications of this research include that parents and teachers of children with cerebral palsy should provide support for their involvement in physical activity, physiotherapists should try to reduce the pain and increase the perceived relevancy of the treatments they deliver to young people with cerebral palsy, and psychologists should be aware of some of the difficulties people with cerebral palsy face and how they may marufest in adults with the condition. VI ACKNOWLEDGEMENTS I would like to thank my supervisor, Professor Tony Morris, for his professionaUsm, his encouragement, his belief in my ability, and his willingness to involve me in other areas of research and scholarship. Thanks also go to my co- supervisor, Associate Professor Mark Andersen for giving so generously of his time, for his commitment to excellence, and for introducing me to the "St Kilda campus" of Victoria University. I would like to express my sincere thanks to the staff from many disability organisations who assisted me through informing their clients about my research. Thanks goes to staff at Yooralla, Scope, Disability Attendant Support Services Incorporated, the Cerebral Palsy Support Network, the Equity and Social Justice Branch of Victoria University, the National Industry Association for Disabitity Services, the Ausfratian Cerebral Palsy Association, the Spastic Centre of New South Wales, the Cerebral Palsy Association of Westem Austratia, the Cerebral Palsy League of Queensland, and CCS (New Zealand). I am most grateful for their endeavours. I am indebted to the adults with cerebral palsy who participated in the research. A special thanks goes to those participants who took time to share their life stories with me. I am immensely appreciative of the staff at the Victoria University Aquatic and Fitness Cenfre for their support and friendship. Thanks to George and Wendy Mimro for allowing me to access the Centre's staff and facilities to conduct the weight-training programme in Study 4, and for their generous hospitatity and friendship. I would also like to thank Haydn Pope and Tony Marichal for their professional assistance during the weight-training programme. A huge additional thanks also goes to Tony, my trainer. Vll whose sense of humour, support, open-mindedness, and friendship are always appreciated. Thank you to the wonderful friends I have met during my time in Ausfralia, who always provided welcome relief from my studies. Thanks to Matt Kerlin for giving me so much more than a footy team to support (Go Tiges!), to James Bester for infroducing me to the fascinating world of Nerita atramentosa and Bembiciiim nanum, to Des Craig for being there for me and for understanding what it means to be a Kiwi, to Mon Vicino for always getting my humour, to Dave Wilson for his general support, to Mounir Faad for his entertainment, to Anne Binkley and Doug Findlay for their unbelievable warmth and generosity, to Gavin Dagley for his understanding and intellectual support, and to Andrew McNamara for his kindness. You guys have given me so much. Thanks to old friends, Kirsty Porter and Paul McKey, for sharing another chapter of my life. Thank you to my postgraduate colleagues for sharing the journey. Special thanks to Kate Murphy, who went the distance with me. Thanks to Georgina Sutherland, whose thesis inspired my research topic. Finally, to my family and fiiends back in New Zealand, thanks for supporting me from a distance. In particular, thank you to Mum, Dad, and Bub for their support and unconditional love throughout my life. Vlll TABLE OF CONTENTS Student Declaration u Absfract iii Acknowledgements vi Table of Contents viii List of Tables xxu Chapter 1: Infroduction 1 Chapter 2: Review of Literature on the Effects of Physical Activity on the Health- Related Quality of Life and Psychosocial Functioning of People with Cerebral Palsy 4 Physical Activity and Health 4 Physical Activity, Health-Related Quality of Life, and Psychosocial Functioiung 6 Physical Activity and Health-Related Quality of Life 6 Physical Activity and Psychosocial Functioning 8 Physical Activity and Anxiety