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ACKNOWLEDGEMENTS This project could not have been completed without the support and participation of so many people. I would like to express my thanks and gratitude to you all and especially the following; To my supervisor Jane Koziol-McLain, who quietly guided me through the process with an abundance of invaluable knowledge, patience and support, especially at times when I doubted my ability to complete this thesis. To Dr Heather McDowell, colleague, friend and co-investigator of the wider study that this thesis has explored part of, thank you for sharing your knowledge, commitment to the project and a willing ear when needed. To Peter Reed, biostatistician with the Children’s Research Centre, Starship for his statistical analysis and invaluable assistance with the intricacies of data analyses and to Gail Giles for her help with the ethics approval process. Thanks are also due to Simon Denny and the Youth’07 research team for the use of the survey, their data and valuable advice. Funding for the ACSIS Study was generously provided by the Newmarket Rotary Club Inc and CanTeen New Zealand. A very special thank you to the childhood cancer survivors who gave their time to complete the survey, you are amazing young people who inspire me constantly with your courage and resiliency. To my family, thank you for your unqualified support, especially Paul for your patience, understanding and faith in me, you made me believe I could do it. This thesis is dedicated to our son Chris, who at 21yrs never had the chance to become a survivor of the cancer he had. You are in my heart forever. National ethical approval for was granted by the Upper South B Regional Ethics Committee -ref: URB/09/05/017 and the ADHB-RRC- ref no: A+4391 (Appendix A). vi
ABSTRACT There has been increased recognition of the psychosocial impact of a diagnosis of cancer as well as the intensive treatment necessary to effect a cure. However there is a lack of consensus across studies on the degree and type of psychosocial difficulties experienced by young survivors. The aim of this study was to describe the self-reported psychosocial wellbeing of adolescent childhood cancer survivors. In this case-control study, 170 childhood cancer survivors aged 12 to 18 years completed an internet based survey. This was a modified version of the Youth’07 Health and Wellbeing Survey of Secondary School Students in New Zealand. The comparison group were the 9,107 students who took part in the Youth’07 survey. Psychosocial wellbeing was assessed by four standardised measures of: a) wellbeing (WHO-5), b) anxiety (MASC-10), c) depression (RADS2-SF) and d) emotional and behavioural difficulties (SDQ). The majority of childhood cancer survivors scored within the normal range across all four measures; WHO-5 (89%), MASC-10 (93%), RADS2-SF (94%) and SDQ total difficulties (82%). Compared to a normative sample of their peers, they reported greater psychosocial wellbeing (very good or excellent 60.2% vs. 49.9%, p
Page 1 and 2: The Self Reported Psychosocial Well
Page 3 and 4: 3.14 Confidentiality and right to p
Page 5: ATTESTATION OF AUTHORSHIP “I here
Page 9 and 10: CHAPTER 1 INTRODUCTION AND OVERVIEW
Page 11 and 12: psychosocial effects intersect with
Page 13 and 14: innovative multimedia (pictures, mu
Page 15 and 16: in Twombly, 2004). The NCCS was est
Page 17 and 18: 2.1 Introduction CHAPTER 2 LITERATU
Page 19 and 20: demonstrate a higher likelihood of
Page 21 and 22: data from the Childhood Cancer Surv
Page 23 and 24: 2.6.1 Internet surveys and studies
Page 25 and 26: Aotearoa/New Zealand. The following
Page 27 and 28: could also be reported as a nested
Page 29 and 30: Table 1. Childhood cancer survivor
Page 31 and 32: answered by touch screen action wit
Page 33 and 34: The final survey questionnaire was
Page 35 and 36: 3.9 Standardized measures of psycho
Page 37 and 38: emotional, conduct problems, hypera
Page 39 and 40: programme without destabilizing exi
Page 41 and 42: approved in Crown Health Agencies
Page 43 and 44: questionnaire that was upsetting in
Page 45 and 46: 4.1 Introduction CHAPTER 4 RESULTS
Page 47 and 48: Table 2. Socio-demographic and canc
Page 49 and 50: N 40 30 20 10 0 0 5 10 15 20 25 Sco
Page 51 and 52: 30 N 20 10 0 0 5 10 15 20 25 Score
Page 53 and 54: Table 4. WHO-5 score by demographic
Page 55 and 56: RT N Y Mod-severe Depression 9 1 7.
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Cancer characteristics Diagnosis CN
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Table 9. Hyperactivity by demograph
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Table 11. Prosocial Scale by demogr
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In summary, older age was associate
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4.4.2 Comparison of depression in C
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Table 17. Comparison of SDQ prosoci
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Wells, & Scott., 2006), that report
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similar between both the study and
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18years, when the protective factor
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parts of New Zealand have either li
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Key implications for practice inclu
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therapy do not plateau but increase
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Children's Oncology Group. (2006).
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Lusk, C., Delclos, G. L., Burau, K.
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Rosoff, P. M., Werner, C., Clipp, E
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APPENDICES 79
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Appendix B: Survey Participant Info
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Information Sheet A study of the qu
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How will I find out about the resul
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Consent Form ACSIS: A Paediatric Ha
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Over the last six months... I have
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d) MASC-10 We would like to ask you
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