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Cancer Care for Adolescents and Young Adults

Cancer Care for Adolescents and Young Adults

Daniel Kelly (Editor), Faith Gibson (Editor)

ISBN: 978-0-470-69774-0 April 2008 Wiley-Blackwell 272 Pages


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.

Introduction .

Daniel Kelly and Faith Gibson.

A Young Person’s Experience : Life Before Treatment .

Becky Lofts.

1. Cancer in Adolescence: Incidence and Policy Issues .

Jeremy Whelan and Lorna Fern.


Incidence of cancer in young people.

Types of cancer affecting TYAs.

Adolescent cancer incidence in England.

Adolescent cancer incidence in Europe.

Changes in incidence in Europe.

Gender differences.

Outcomes of treatment.

Delivery of care.

Influence of protocols.

Long-term issues.

National health policy in the UK.

Development of specialist services.

Young people and the national cancer policy.

Current level of implementation.


2. The Physical and Emotional Impact of Cancer in.

Adolescents and Young Adults .

Daniel Kelly.


A unique time of life.

A period of transition and change.

A life interrupted.

Confronting a diagnosis of cancer.

The ‘problem’ of adolescence.

The ‘reality’ of adolescence.

The culture of care.

The context of care.

The importance of coping.

Emotional support.

Support needs of young people.

The importance of the body in adolescent cancer.

Recurrence of disease and the body in adolescent cancer.

Body work in cancer care.

Looking forward.

3. The Impact of Cancer on Parents and Families .

Anne Grinyer.


Making this research possible.

The research approach.

Renegotiating relationships within the family.

Fluctuating dependence and independence.

Taking control of their body.

Sharing intimate moments.

Financial dependence.

Relationships within the family.

Parenting roles.

Place of death.

Negotiating relationships outside the family.

Consultations with professionals.

Family social networks.

The implications for policy.

Final thoughts.

4. The Impact of Adolescent Cancer on Healthcare Professionals .

Susie Pearce.


Cultural meanings of care, cancer, and adolescent cancer care.

Theories of stress, burnout, and coping.

Emotions and care work.

The ‘emotional self’.

Unconscious feelings in adolescent cancer work.

Mastering intense feelings.

Maintaining boundaries.

Multidisciplinary team working.

Care and support.

Concluding thoughts.

A Young Person’s Experience : Life During Treatment .

Kelly Denver.

5. Supportive Care for Adolescents and Young Adults.

During Cancer Treatment .

J Neale Hanvey and Alison Finch.


Supportive care: how is it defined?.

Defining supportive care.

The young person and cancer.

Adolescence and transitions.

Beyond adolescence.

Supporting the tasks of adolescence: forming a clear identity.

Accommodating a changing or new body image.

The significance of symptom management on body image.

and self-concept.

Negotiating a new relationship with parents.

The emerging independent self.

Trying to reconcile the situation.

The ethics of supportive care.

Developing a personal value system.


Ethical theories.

Achieving financial and social independence.

Developing relationships.

Peer relationships.

Romantic relationships.


Developing cognitive skills and the ability to think abstractly.

Controlling their future.

Developing the ability to control behaviour according to.

social norms and taking responsibility.

Meeting the challenges of supportive care in reality.

Team working.

The importance of a working philosophy and physical.



Concluding thoughts.

6. Getting on With Life During Treatment .

Roberta Woodgate.


Challenges facing adolescents with cancer.

Body image and sense of self challenges.

Peer relation challenges.

Family relation challenges.

Sexual health challenges.

Education and employment challenges.

Getting on with life.

Hoping for the best.

Having the right attitude.

Knowing what to expect.

Making some sense out of a bad situation.

Taking one day at a time.

Taking time for yourself.

Staying connected.

Implications for health professionals.


7. End of Treatment Issues: Looking to the Future .

Nelia Langeveld and Julia Arbuckle.


The ongoing support needs of young people finishing.

cancer treatment.

Trajectory of need.

Re-establishing an individual, social, and sexual identity.

Establishing a new identity.

Sexual identity.

Renegotiating relationships with family and friends.



Illustration of negotiating relationships.

Re-engaging with life after treatment by occupying time.

with meaningful activity.

Coping with the after-effects of treatment.

Facing mortality.

Being a cancer survivor.

The need for aftercare.

Models of follow-up care.

The transition process.


A Young Person’s Experience : Life After Treatment.

or Chemotherapy Saves the Lost Boy .

Alan Pitcairn.

8. Long-term Effects of Cancer Treatment .

Gill Levitt and Debra Eshelman.


Long-term survival.

Long-term sequelae.

Physical late effects.

Pubertal development and fertility.

Cardiac effects.


Radiation and SMNs.

Chemotherapy and SMNs.

Genetic factors and SMNs.



Neurocognitive effects.

Psychosocial late effects.

Body image.



Post-traumatic stress.

Health behaviours.


Alcohol use.

Illicit drug use.

Occupational and insurance status.

Delivery of care.

Patient education.


9. Palliation and End of Life Care Issues .

Maggie Bisset, Sue Hutton, and Daniel Kelly.


The importance of experience.

Constructions of palliative care.

Defining palliative care.

Palliative care for whom?.

What we mean by palliative care.

The search for meaning.

Working with the search for meaning.

Practice and challenges in palliative care.

‘Why me man?’.

‘Don’t tell him he’s dying’.

‘My pain’s no better . . . you’re rubbish you are!’.

Near the end of life.

Recognising when death is likely.

Place of death.

Decision making.

Fundamental aspects of care.

Is there meaning in bereavement?.

Common occurrences in bereavement.

Having a hiding place.

Completing the construction of palliative care.


10. Building a Culture of Participation: Young People’s Involvement.

in Research .

Faith Gibson.

Setting the scene.

Drivers towards increased participation of young people.

Why participation is important.

Levels of participation.

Young people as partners in research.

Consulting with young people.

Young people as collaborators in research.

User-controlled research.

Methodologies used to facilitate participation in research.

Evaluating participation.


11. Developing an Integrated Approach to the Care of Adolescents.

and Young Adults with Cancer .

Daniel Kelly and Faith Gibson.


Putting service developments into context.

Contributing to the evidence base.

Issues around diagnosis.

Delay in diagnosis.

Impact of a cancer diagnosis.

Impact on the family.

Supporting young people at diagnosis.

Delivering appropriate care.

The treatment phase.

Where should care be delivered?.

Helpful and unhelpful ways of communicating.

Creating the right environment for care.

Supporting young people during treatment.

Role and significance of family members.

Beyond treatment.

The need for continuing care.

Supporting young people after treatment.

Towards an integrated approach to TYA cancer care.

Useful Contacts .


"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)
* Focus on care of adolescents and young adults with cancer
* Builds on national NICE and DH guidelines
* Adopts an integrated inter-professional approach
* Examines the effects of treatment, rehabilitation and palliative care