Nursing Adolescents and Young Adults with Cancer

239 Pages·2018·3.82 MB·English

by  Pia Riis Olsen

Nursing Adolescents
and Young Adults
with Cancer

Developing Knowledge,
Competence and Best Practice
Pia Riis Olsen
Sam Smith
Editors
123
Nursing Adolescents and Young Adults
with Cancer
Pia Riis Olsen • Sam Smith
Editors
Nursing Adolescents and
Young Adults with Cancer
Developing Knowledge, Competence
and Best Practice
Editors
Pia Riis Olsen Sam Smith
Department of Oncology Head of Nursing and Clinical Services
Aarhus University Hospital Teenage Cancer Trust
Aarhus, Denmark London, United Kingdom
ISBN 978-3-319-73554-2 ISBN 978-3-319-73555-9 (eBook)
https://doi.org/10.1007/978-3-319-73555-9
Library of Congress Control Number: 2018941124
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Foreword
Although the description of TYA (teenage young adult) or AYA (adolescent young
adult) cancer, and the definition of its age range, may vary internationally, what can-
not vary is the fact that the needs of young people and young adults with cancer are
defined as much by their age and life stage as by their disease. Whilst it is recog-
nised that the burden of cancer in the population as a whole lies firmly at the older
end of the life span, cancer in TYA presents a major challenge to the emerging
person which, despite often very good survival rates, can damage or even entirely
derail future life chances, education, employment, relationships and health. Apart
from the imperative of ensuring that every young person with cancer gets the best
possible chance to survive his/her disease and the experience of its treatment, the
potential for life years gained from successfully treating a young person with cancer
demands that their needs as a young person are addressed on an equal basis to their
needs as patient with cancer. Only in this way can each TYA maintain or, if neces-
sary, reinvent the trajectory of their life and take their place with their peers as part
of their generation’s contribution to our society and its future: there is too much to
lose, for the young person and for society, not to get this right.
The development of TYA cancer care owes so much to the insight, passion and drive
of nurses who have led the way amongst the now widening circle of professionals
engaged in providing specialist care for young people with cancer. Without nursing
leadership and commitment, the progress seen in the past 20 years would not have been
achieved. Nevertheless, there are still too many young people who do not benefit from
specialist TYA services even where these exist, and there are many more for whom
such services are yet to be developed. Sam Smith and Pia Riis Olsen have assembled a
rich source of expertise from amongst those active and leading in TYA care. The
authors offer insights into the development of TYA care: why it matters, how it should
be delivered and how it might be done better—and with a recognition of the unique
needs and wants of each young person at the centre of it all.
As a paediatric oncologist whose own ventures into TYA cancer care were
encouraged and supported by talented nursing colleagues, I welcome and warmly
recommend this book. I know it will help inspire others to embrace the challenges
and rewards of working with young people affected by cancer.
University of Bristol Michael Stevens, MD,
Bristol, UK Emeritus Professor of Paediatric Oncology
v
Contents
1 Introduction: Beyond No Man’s Land: The Development
of AYA Cancer Nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Sam Smith and Pia Riis Olsen
Part I History of the Speciality and AYA Nursing Competence Development
2 The Development of Adolescent and Young Adult
Cancer Nursing: The UK Experience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Sue Morgan
3 A Personal Reflection of My Leadership Journey
in AYA Nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Johan De Munter
4 Educating and Developing AYA Cancer Nurses . . . . . . . . . . . . . . . . . . . . 41
Maria Cable and Nicky Pettitt
5 Exploring Professional Boundaries in AYA Nursing Care . . . . . . . . . 63
Jamie T. Cargill
Part II Approaches, Interventions and Innovations in AYA Cancer Nursing
6 Communication with Young People with Cancer About
Sensitive Topics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
Bibi Hølge-Hazelton and Pia Riis Olsen
7 Balancing Risk with Resilience: Using Holistic Psychosocial
Screening and Assessment Tools Effectively with Adolescents
and Young Adults with Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
Pandora Patterson, Frances Hardman, Jennifer Cheshire,
and Ursula Sansom-Daly
8 Cancer Rehabilitation of Adolescents and Young Adults . . . . . . . . . . . 121
May Aasebø Hauken
9 Network-Focused Nursing and Network Meetings in AYA
Cancer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143
Pia Riis Olsen
vii
viii Contents
10 The Dutch AYA Outpatient Clinic: Support and Counselling
During and After Cancer Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157
Rosemarie Jansen, Suzanne E. J. Kaal, Marieke Schreuder- Cats, and
Eveliene Manten-Horst
11 Transition for Adolescents and Young Adults with Cancer . . . . . . . . . 173
Imelda Coyne
12 Nurse-Led Ambulatory Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199
Lisa-Marie Mcmonagle
Part III Aspects and Challenges for Future AYA Cancer Nursing
13 Challenges for Nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
Louise Soanes
14 Leadership and the Future Development of AYA Services . . . . . . . . . . 231
Daniel Kelly
Contributors
Maria Cable Teenage/Young Adult Cancer Care, Faculty of Health and Life
Science, School of Nursing, Midwifery and Health, Coventry University,
Coventry, UK
Jamie T. Cargill Teenage and Young Adult Cancer Service South West, Bristol
Cancer Institute, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
Jennifer Cheshire Teenage Cancer Trust, London, UK
Imelda  Coyne School of Nursing and Midwifery, Trinity College Dublin,
The University of Dublin, Dublin, Ireland
Johan De Munter Cancer Center, University Hospital Ghent, Ghent, Belgium
Frances Hardman Teenage and Young Adult Cancer Service South West, Bristol
Cancer Institute, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
May  Aasebø  Hauken Center for Crisis Psychology, Faculty of Psychology,
University of Bergen, Bergen, Norway
Bibi  Hølge-Hazelton Zealand University Hospital & University of Southern
Denmark, Roskilde, Denmark
Rosemarie Jansen Radboud university medical center Nijmegen and the Mid-East
region of the Netherlands, Nijmegen, The Netherlands
Suzanne E. J. Kaal Radboud university medical center Nijmegen and the Mid-East
region of the Netherlands, Nijmegen, The Netherlands
Daniel  Kelly Royal College of Nursing Chair of Nursing Research, School
of Healthcare Sciences, Cardiff University, Cardiff, UK
Eveliene Manten-Horst National AYA ‘Young & Cancer’ Platform, Utrecht,
The Netherlands
Lisa-Marie McMonagle University College Hospitals, London, UK
Sue Morgan Leeds Teaching Hospitals NHS Trust, Leeds, UK
Pia  Riis  Olsen Department of Oncology, Aarhus University Hospital,
Aarhus, Denmark
ix
x Contributors
Pandora  Patterson CanTeen, Newtown and Cancer Nursing Research Unit,
Sydney University, Sydney, Australia
Nicky  Pettitt Teenage Cancer Trust Young Persons Unit, University Hospitals
Birmingham NHS Foundation Trust, Birmingham, Coventry University, Coventry, UK
Ursula Sansom-Daly Behavioural Sciences Unit, Kids Cancer Centre, Sydney
Children’s Hospital, School of Women’s and Children’s Health, Faculty of Medicine,
The University of New South Wales, Sydney, NSW, Australia
Marieke Schreuder-Cats University medical center Utrecht Cancer Center and
the Mid-r egion of the Netherlands, Utrecht, The Netherlands
Sam Smith Teenage Cancer Trust, London, UK
Louise  Soanes TYA Cancer Services, University College Hospital London,
London, UK
Michael Stevens University of Bristol, Bristol, UK
Introduction: Beyond No Man’s Land: 1
The Development of AYA Cancer Nursing
Sam Smith and Pia Riis Olsen
Recognition of adolescents as a distinct group in healthcare has been documented
since the 1930s. Historically, there has been little attention to the specific needs of
the adolescent and young adult (AYA) cancer population, and age-appropriate care
and practice changes have been slow to occur. The AYA patient population has tra-
ditionally been treated with younger children or much older adults and was once
described ‘at the edge of no man’s land’ [1]. However, attention and focus to AYA
cancer has gained increasing momentum internationally, and alongside this, the
experience and expertise of the nursing profession has grown significantly over
time. AYA cancer care and AYA cancer nursing are now gaining recognition as a
distinct subspeciality in the UK, across Europe and further afield internationally. In
many countries, they are now being cared for by specialist teams who are experts in
the delivery of AYA care, often within purpose-built environments [2].
In order to understand the specific development of AYA cancer nursing practice,
it is important to review in context of the wider development of recognition of the
adolescent and young adult patient within the healthcare setting.
1.1 The Adolescent and Young Adult Patient
Historical review of the literature shows that the ‘notion’ of adolescence has devel-
oped over time, driven by psychological and physiological theories and influenced
by complex socio-political factors. During the 1930s, the recognition of adoles-
cence within healthcare started to emerge within medical lecture notes,
S. Smith, MSc, BSc, RN (*)
Teenage Cancer Trust, London, UK
e-mail: [email protected]
P. R. Olsen, PhD, MScN, RN
Department of Oncology, Aarhus University Hospital, Aarhus, Denmark
e-mail: [email protected]
© Springer International Publishing AG, part of Springer Nature 2018 1
P. R. Olsen, S. Smith (eds.), Nursing Adolescents and Young Adults with Cancer,
https://doi.org/10.1007/978-3-319-73555-9_1