Cancer Care for Adolescents and Young Adults (eBook)

Daniel Kelly, Faith Gibson (Herausgeber)

eBook Download: PDF

2008
John Wiley & Sons (Verlag)
978-0-470-69801-3 (ISBN)

Infos

Cancer in Adolescents and Young Adults is a practical guide to cancer care in adolescents and young adults. It considers the impact of diagnosis on individuals, and their families, as well as examining the impact on the health professionals responsible for their care. There are sections focussing on the adolescent's experience of cancer and ongoing care needs during treatment, and on life after cancer, including rehabilitation and palliative care.

• Builds on the forthcoming NICE guidelines on Supportive Cancer Care for Children & Young People, and recent Department of Health guidelines & policy initiatives
• Adopts an integrated inter-professional approach
• Contains evidence-based contributions from leading professionals in cancer care

Cancer in Adolescents and Young Adults is an essential resource for all those involved with the provision of care and support for adolescents and young adults with cancer.

About the Editors:

Dr Daniel Kelly is Reader in Cancer & Palliative Care, Middlesex University, London.
Dr Faith Gibson is Senior Lecturer in Children's Nursing Research, Institute of Child Health, Great Ormond Street Hospital and King's College London.

Dr Daniel Kelly is Reader in Cancer & Palliative Care, Middlesex University, London.

Dr Faith Gibson is Senior Lecturer in Children's Nursing Research, Institute of Child Health, Great Ormond Street Hospital and King's College London.

Inhalt

CANCER CARE FOR ADOLESCENTS AND YOUNG ADULTS 1
Contents 7
Contributors 13
Foreword 15
Introduction 17
A Young Person’s Experience 1: Life Before Treatment 20
1 Cancer in Adolescence: Incidence and Policy Issues 23
Introduction 23
Incidence of cancer in young people 23
Types of cancer affecting TYAs 24
Adolescent cancer incidence in England 25
Adolescent cancer incidence in Europe 26
Changes in incidence in Europe 28
Gender differences 29
Outcomes of treatment 29
Delivery of care 30
In.uence of protocols 31
Long-term issues 32
National health policy in the UK 32
Development of specialist services 33
Young people and the national cancer policy 34
Current level of implementation 35
Summary 36
2 The Physical and Emotional Impact of Cancer in Adolescents and Young Adults 39
Introduction 39
A unique time of life 40
A period of transition and change 40
A life interrupted 41
Confronting a diagnosis of cancer 42
The ‘problem’ of adolescence 44
The ‘reality’ of adolescence 45
The culture of care 45
The context of care 46
The importance of coping 48
Emotional support 49
Support needs of young people 50
The importance of the body in adolescent cancer 52
Recurrence of disease and the body in adolescent cancer 53
Body work in cancer care 54
Looking forward 56
3 The Impact of Cancer on Parents and Families 60
Introduction 60
Making this research possible 61
The research approach 61
Renegotiating relationships within the family 62
Fluctuating dependence and independence 63
Taking control of their body 63
Sharing intimate moments 64
Financial dependence 65
Relationships within the family 66
Parenting roles 66
Place of death 67
Negotiating relationships outside the family 68
Consultations with professionals 68
Family social networks 69
The implications for policy 70
Final thoughts 72
4 The Impact of Adolescent Cancer on Healthcare Professionals 75
Introduction 75
Cultural meanings of care, cancer, and adolescent cancer care 76
Theories of stress, burnout, and coping 77
Emotions and care work 83
The ‘emotional self’ 84
Unconscious feelings in adolescent cancer work 86
Mastering intense feelings 87
Maintaining boundaries 88
Multidisciplinary team working 89
Care and support 91
Concluding thoughts 93
A Young Person’s Experience 2: Life During Treatment 97
5 Supportive Care for Adolescents and Young Adults During Cancer Treatment 101
Introduction 101
Supportive care: how is it defined? 101
Defining supportive care 103
The young person and cancer 105
Adolescence and transitions 106
Beyond adolescence 107
Supporting the tasks of adolescence: forming a clear identity 108
Accommodating a changing or new body image 109
The significance of symptom management on body image and self-concept 112
Negotiating a new relationship with parents 115
The emerging independent self 116
Trying to reconcile the situation 118
The ethics of supportive care 119
Developing a personal value system 122
Consent 122
Ethical theories 124
Achieving financial and social independence 125
Developing relationships 127
Peer relationships 127
Romantic relationships 128
Fertility 129
Developing cognitive skills and the ability to think abstractly 130
Controlling their future 132
Developing the ability to control behaviour according to social norms and taking responsibility 133
Meeting the challenges of supportive care in reality 135
Team working 136
The importance of a working philosophy and physical environment 137
Summary 138
Concluding thoughts 139
6 Getting on with Life During Treatment 146
Introduction 146
Challenges facing adolescents with cancer 146
Body image and sense of self challenges 147
Peer relation challenges 147
Family relation challenges 148
Sexual health challenges 149
Education and employment challenges 149
Getting on with life 150
Hoping for the best 150
Having the right attitude 151
Knowing what to expect 152
Making some sense out of a bad situation 153
Taking one day at a time 155
Taking time for yourself 156
Staying connected 157
Implications for health professionals 158
Conclusion 161
7 End of Treatment Issues: Looking to the Future 163
Introduction 163
The ongoing support needs of young people finishing cancer treatment 164
Trajectory of need 164
Re-establishing an individual, social, and sexual identity 165
Establishing a new identity 166
Sexual identity 167
Renegotiating relationships with family and friends 167
Family 167
Friends 168
Illustration of negotiating relationships 168
Re-engaging with life after treatment by occupying time with meaningful activity 169
Coping with the after-effects of treatment 170
Facing mortality 171
Being a cancer survivor 171
The need for aftercare 172
Models of follow-up care 173
The transition process 174
Conclusion 175
A Young Person’s Experience 3: Life After Treatment or Chemotherapy Saves the Lost Boy 179
8 Long-term Effects of Cancer Treatment 183
Introduction 183
Long-term survival 184
Long-term sequelae 184
Physical late effects 185
Pubertal development and fertility 185
Cardiac effects 188
SMNs 189
Radiation and SMNs 190
Chemotherapy and SMNs 190
Genetic factors and SMNs 191
Osteopenia/Osteoporosis 191
Obesity 192
Neurocognitive effects 193
Psychosocial late effects 193
Body image 194
Sexuality 194
Fatigue 195
Post-traumatic stress 195
Health behaviours 195
Smoking 196
Alcohol use 196
Illicit drug use 197
Occupational and insurance status 197
Delivery of care 197
Patient education 198
Conclusion 199
9 Palliation and End of Life Care Issues 208
Introduction 208
The importance of experience 208
Constructions of palliative care 210
Defining palliative care 210
Palliative care for whom? 210
What we mean by palliative care 210
The search for meaning 212
Working with the search for meaning 213
Practice and challenges in palliative care 214
‘Why me man?’ 214
‘Don’t tell him he’s dying’ 216
‘My pain’s no better . . . you’re rubbish you are!’ 218
Near the end of life 219
Recognising when death is likely 219
Place of death 220
Decision making 220
Fundamental aspects of care 221
Is there meaning in bereavement? 222
Common occurrences in bereavement 224
Having a hiding place 225
Completing the construction of palliative care 226
Summary 227
10 Building a Culture of Participation: Young People’s Involvement in Research 230
Setting the scene 230
Drivers towards increased participation of young people 232
Why participation is important 233
Levels of participation 233
Young people as partners in research 234
Consulting with young people 235
Young people as collaborators in research 235
User-controlled research 237
Methodologies used to facilitate participation in research 239
Evaluating participation 240
Conclusion 241
11 Developing an Integrated Approach to the Care of Adolescents and Young Adults with Cancer 245
Introduction 12
Putting service developments into context 248
Contributing to the evidence base 250
Issues around diagnosis 250
Delay in diagnosis 250
Impact of a cancer diagnosis 251
Impact on the family 251
Supporting young people at diagnosis 252
Delivering appropriate care 252
The treatment phase 253
Where should care be delivered? 253
Helpful and unhelpful ways of communicating 254
Creating the right environment for care 255
Supporting young people during treatment 256
Role and significance of family members 257
Beyond treatment 258
The need for continuing care 258
Supporting young people after treatment 259
Towards an integrated approach to TYA cancer care 260
Useful Contacts 264
Index 266

Rezensionen

"Each section [of the book] gives a voice to young people, beginning with their experiences of cancer. It looks at the impacts of adolescent cancer on healthcare professionals, an area that is often neglected." (Nursing Standard, March 2009)

"It was about time somebody wrote down all the things that really
matter and all the things that people working in this highly
specialised field really need to know. And this is it! Kelly and
Gibson have pulled together the most comprehensive reference book
you could ask for. It should be prominent on the shelf of everyone
working or training in the field of cancer care with young people
and their families. It's all here, it's all readable and its all
useful. Fantastic!"

-Simon Davies, Chief Executive Officer, Teenage Cancer
Trust

"Speaking as a parent this book has made very interesting
reading. I wish I had had the opportunity to have read this book
whilst my son was actually on treatment, so much makes sense and so
much is explained. It really showed what is "normal " behaviour of
a teenager with cancer and that is so reassuring to read. There are
many lines of the book that rang home as being so true. For example
the view of the 17 year old who said that one had to 'get through
life', not over it, getting on with life, normal life."

-Ginny Macintyre, Parent

Produkt-Details

• Erscheint lt. Verlag: 30.4.2008
• Sprache: englisch
• Themenwelt: Medizin / Pharmazie ► Medizinische Fachgebiete ► Onkologie
• Themenwelt: Medizin / Pharmazie ► Pflege ► Pflegemanagement / Qualität / Recht
• Schlagworte: adolescents • builds • Cancer • Care • Clinical Specialities • Diagnosis • evidencebased • Experience • Gesundheits- u. Sozialwesen • Guide • Health • Health & Social Care • Impact • Individuals • Integrated • interprofessional • Krankenpflege • Life • nursing • Practical • Professionals • Public Health Practice • Public Health / Praxis • responsible • sections • Spezialaufgaben i. d. klinischen Krankenpflege • Treatment • Young
• ISBN-10: 0-470-69801-2 / 0470698012
• ISBN-13: 978-0-470-69801-3 / 9780470698013