Cancer Care for Adolescents and Young Adults

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ISBN: 9781405130943 | 1405130946
Cover: Paperback
Copyright: 1/29/2008

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There is a growing interest in the needs of adolescents and young adults in response to the forthcoming NICE guidelines on Supportive Cancer Care for Adults, and similar guidelines in preparation by the Department of Health for Adolescents. Cancer in Adolescents and Young Adults is a practical guide to cancer care in adolescents and young adults. The first section examines cancer in adolescence and the impact of diagnosis on adolescence. The second section focuses on the experience of cancer and ongoing care needs i.e. 'life during cancer'. The final section examines the consequences of cancer by concentrating on recovery, rehabilitation and/or end of life issues i.e. 'life after cancer.'

Contributors	p. xi
Foreword	p. xiii
Introduction	p. 1
A Young Person's Experience 1: Life Before Treatment	p. 4
Cancer in Adolescence: Incidence and Policy Issues	p. 7
Introduction	p. 7
Incidence of cancer in young people	p. 7
Types of cancer affecting TYAs	p. 8
Adolescent cancer incidence in England	p. 9
Adolescent cancer incidence in Europe	p. 10
Changes in incidence in Europe	p. 12
Gender differences	p. 13
Outcomes of treatment	p. 13
Delivery of care	p. 14
Influence of protocols	p. 15
Long-term issues	p. 16
National health policy in the UK	p. 16
Development of specialist services	p. 17
Young people and the national cancer policy	p. 18
Current level of implementation	p. 20
Summary	p. 20
The Physical and Emotional Impact of Cancer in Adolescents and Young Adults	p. 23
Introduction	p. 23
A unique time of life	p. 24
A period of transition and change	p. 24
A life interrupted	p. 25
Confronting a diagnosis of cancer	p. 26
The 'problem' of adolescence	p. 28
The 'reality' of adolescence	p. 29
The culture of care	p. 29
The context of care	p. 30
The importance of coping	p. 32
Emotional support	p. 33
Support needs of young people	p. 34
The importance of the body in adolescent cancer	p. 36
Recurrence of disease and the body in adolescent cancer	p. 37
Body work in cancer care	p. 38
Looking forward	p. 40
The Impact of Cancer on Parents and Families	p. 44
Introduction	p. 44
Making this research possible	p. 45
The research approach	p. 45
Renegotiating relationships within the family	p. 46
Fluctuating dependence and independence	p. 47
Taking control of their body	p. 47
Sharing intimate moments	p. 48
Financial dependence	p. 49
Relationships within the family	p. 50
Parenting roles	p. 50
Place of death	p. 51
Negotiating relationships outside the family	p. 52
Consultations with professionals	p. 52
Family social networks	p. 53
The implications for policy	p. 54
Final thoughts	p. 56
The Impact of Adolescent Cancer on Healthcare Professionals	p. 59
Introduction	p. 59
Cultural meanings of care, cancer, and adolescent cancer care	p. 60
Theories of stress, burnout, and coping	p. 61
Emotions and care work	p. 67
The 'emotional self'	p. 68
Unconscious feelings in adolescent cancer work	p. 70
Mastering intense feelings	p. 71
Maintaining boundaries	p. 72
Multidisciplinary team working	p. 73
Care and support	p. 75
Concluding thoughts	p. 77
A Young Person's Experience 2: Life During Treatment	p. 81
Supportive Care for Adolescents and Young Adults During Cancer Treatment	p. 85
Introduction	p. 85
Supportive care: how is it defined?	p. 85
Defining supportive care	p. 87
The young person and cancer	p. 89
Adolescence and transitions	p. 90
Beyond adolescence	p. 91
Supporting the tasks of adolescence: forming a clear identity	p. 92
Accommodating a changing or new body image	p. 93
The significance of symptom management on body image and self-concept	p. 96
Negotiating a new relationship with parents	p. 99
The emerging independent self	p. 100
Trying to reconcile the situation	p. 102
The ethics of supportive care	p. 103
Developing a personal value system	p. 106
Consent	p. 106
Ethical theories	p. 108
Achieving financial and social independence	p. 109
Developing relationships	p. 111
Peer relationships	p. 111
Romantic relationships	p. 112
Fertility	p. 113
Developing cognitive skills and the ability to think abstractly	p. 114
Controlling their future	p. 116
Developing the ability to control behaviour according to social norms and taking responsibility	p. 117
Meeting the challenges of supportive care in reality	p. 119
Team working	p. 120
The importance of a working philosophy and physical environment	p. 121
Summary	p. 122
Concluding thoughts	p. 123
Getting on with Life During Treatment	p. 130
Introduction	p. 130
Challenges facing adolescents with cancer	p. 130
Body image and sense of self challenges	p. 131
Peer relation challenges	p. 131
Family relation challenges	p. 132
Sexual health challenges	p. 133
Education and employment challenges	p. 133
Getting on with life	p. 134
Hoping for the best	p. 134
Having the right attitude	p. 135
Knowing what to expect	p. 136
Making some sense out of a bad situation	p. 137
Taking one day at a time	p. 139
Taking time for yourself	p. 140
Staying connected	p. 141
Implications for health professionals	p. 142
Conclusion	p. 145
End of Treatment Issues: Looking to the Future	p. 147
Introduction	p. 147
The ongoing support needs of young people finishing cancer treatment	p. 148
Trajectory of need	p. 148
Re-establishing an individual, social, and sexual identity	p. 149
Establishing a new identity	p. 150
Sexual identity	p. 151
Renegotiating relationships with family and friends	p. 151
Family	p. 151
Friends	p. 152
Illustration of negotiating relationships	p. 152
Re-engaging with life after treatment by occupying time with meaningful activity	p. 153
Coping with the after-effects of treatment	p. 154
Facing mortality	p. 155
Being a cancer survivor	p. 155
The need for aftercare	p. 156
Models of follow-up care	p. 157
The transition process	p. 158
Conclusion	p. 159
A Young Person's Experience 3: Life After Treatment or Chemotherapy Saves the Lost Boy	p. 163
Long-term Effects of Cancer Treatment	p. 167
Introduction	p. 167
Long-term survival	p. 168
Long-term sequelae	p. 168
Physical late effects	p. 169
Pubertal development and fertility	p. 169
Cardiac effects	p. 172
SMNs	p. 173
Radiation and SMNs	p. 174
Chemotherapy and SMNs	p. 174
Genetic factors and SMNs	p. 175
Osteopenia/Osteoporosis	p. 175
Obesity	p. 176
Neurocognitive effects	p. 177
Psychosocial late effects	p. 177
Body image	p. 178
Sexuality	p. 178
Fatigue	p. 179
Post-traumatic stress	p. 179
Health behaviours	p. 179
Smoking	p. 180
Alcohol use	p. 180
Illicit drug use	p. 181
Occupational and insurance status	p. 181
Delivery of care	p. 181
Patient education	p. 182
Conclusion	p. 183
Palliation and End of Life Care Issues	p. 192
Introduction	p. 192
The importance of experience	p. 192
Constructions of palliative care	p. 194
Defining palliative care	p. 194
Palliative care for whom?	p. 194
What we mean by palliative care	p. 194
The search for meaning	p. 196
Working with the search for meaning	p. 197
Practice and challenges in palliative care	p. 198
'Why me man?'	p. 198
'Don't tell him he's dying'	p. 200
'My pain's no better ... you're rubbish you are!'	p. 202
Near the end of life	p. 203
Recognising when death is likely	p. 203
Place of death	p. 204
Decision making	p. 204
Fundamental aspects of care	p. 205
Is there meaning in bereavement?	p. 206
Common occurrences in bereavement	p. 208
Having a hiding place	p. 209
Completing the construction of palliative care	p. 210
Summary	p. 211
Building a Culture of Participation: Young People's Involvement in Research	p. 214
Setting the scene	p. 214
Drivers towards increased participation of young people	p. 216
Why participation is important	p. 217
Levels of participation	p. 217
Young people as partners in research	p. 218
Consulting with young people	p. 219
Young people as collaborators in research	p. 219
User-controlled research	p. 221
Methodologies used to facilitate participation in research	p. 223
Evaluating participation	p. 224
Conclusion	p. 225
Developing an Integrated Approach to the Care of Adolescents and Young Adults with Cancer	p. 229
Introduction	p. 229
Putting service developments into context	p. 232
Contributing to the evidence base	p. 234
Issues around diagnosis	p. 234
Delay in diagnosis	p. 234
Impact of a cancer diagnosis	p. 235
Impact on the family	p. 235
Supporting young people at diagnosis	p. 236
Delivering appropriate care	p. 236
The treatment phase	p. 237
Where should care be delivered?	p. 237
Helpful and unhelpful ways of communicating	p. 238
Creating the right environment for care	p. 239
Supporting young people during treatment	p. 240
Role and significance of family members	p. 241
Beyond treatment	p. 242
The need for continuing care	p. 242
Supporting young people after treatment	p. 243
Towards an integrated approach to TYA cancer care	p. 244
Useful Contacts	p. 248
Index	p. 250
Table of Contents provided by Ingram. All Rights Reserved.

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