The adolescent experience in Juvenile Idiopathic Arthritis

128 Pages·2013·1.82 MB·English

The adolescent experience in
Juvenile Idiopathic Arthritis:
A narrative approach
Coralie E. Fuchs
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Cover Robert Kanters, Ridderprint
Layout Renate Siebes, Proefschrift.nu
Printed by Ridderprint, Ridderkerk
ISBN 978-90-393-5899-3
© 2012 C.E. Fuchs
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system,
or transmitted, in any form or by any means, electronic, photocopying, or otherwise, without
the permission of the author, or, when appropriate, of the publishers of the publications.
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The adolescent experience in
Juvenile Idiopathic Arthritis:
A narrative approach
De ervaring van de adolescent met
Juveniele Idiopatische Artritis: Een narratieve benadering
(met een samenvatting in het Nederlands)
Proefschrift
ter verkrijging van de graad van doctor aan de
Universiteit Utrecht op gezag van de rector magnificus,
prof.dr. G.J. van der Zwaan, ingevolge het besluit van het
college voor promoties in het openbaar te verdedigen
op donderdag 31 januari 2013 des middags te 4.15 uur
door
Coralie Elisabeth Fuchs
geboren op 6 mei 1975
te Heerlen
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Promotoren: Prof.dr. W. Kuis
Prof.dr. G. Sinnema
The research reported in this thesis was financially supported by the Reumafonds (grant
number 03-2-301).
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Voor Bente, Tabe en Jet
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CONTENTS
Chapter 1 Introduction 9
Chapter 2 Self-investigation to explore the impact of juvenile arthritis on 19
adolescent life: a case-study
Chapter 3 Health and identity: self-positioning in adolescent chronic 33
fatigue syndrome & juvenile idiopathic arthritis
Chapter 4 Beyond the symptoms: adolescents’ emotional experiences in 51
chronic fatigue syndrome and juvenile idiopathic arthritis
Chapter 5 Self-investigation in adolescent chronic fatigue syndrome: 65
Narrative changes and health improvement
Chapter 6 Psychological counseling for adolescents with Juvenile 81
Idiopathic Arthritis: for whom and when?
Chapter 7 Summary and general discussion 97
Samenvatting (Summary in Dutch) 111
Dankwoord (Acknowledgements) 121
About the author 125
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1
Introduction
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Chapter 1
Mandy (16 years) “I saw this self-investigation procedure as an opportunity to
leave my illness behind, but now I realize that the arthritis is part of who I am.
Having arthritis formed me and even helped me in becoming the strong individual
that I am now”.
With the advance of medical knowledge and technology, the life expectancy of pediatric patients
with serious illnesses increased impressively. Many diseases that once were life threatening
have now become chronic conditions.1 As a consequence of this development, health care’s
primary focus for these patients has now shifted from acute treatment to long-term regimens.
In the transition from childhood to adulthood, adolescents face the tasks of establishing a
satisfying self-identity and developing interpersonal bonds beyond the family, acquiring a
new status and moving toward a more autonomous stance with regard to the larger world.2
The management of any chronic condition during this period forms an additional challenge
for the teenager and his or her family. While many adolescents with a chronic illness manage
their disease and treatment regimens rather well, reduced adherence to medical regimens and
poor disease self-management are commonly reported.3 During adolescence the responsibility
for the management of the disease traditionally shifts from the parents and care-givers to the
adolescents themselves. Adolescents are encouraged to develop a more active role in their
treatment and to implement the consequences of their disease in everyday life. Clinicians and
other caregivers are required to concurrently support the adolescent’s emerging capacity for
self-management.
It is current practice to stimulate a healthy and normal development of adolescents with a
chronic illness. Positivism and strength of patients are strongly encouraged. However, several
important questions have emerged from clinical practice. Since one of the developmental
tasks of adolescents is to adapt psychosocially to their (peer-)environment, they will be eager
not to focus on their illness or handicap, but try to live their lives just like their healthy peers.
However, the question can be raised whether it is possible, and advisable, to maintain a one-sided
positive and healthy identity in the transition to young adulthood? What are the (long-term)
costs of possibly suppressing the more negative sides of dealing with a chronic illness? The
developmental desire to belong to a peer group and to act ‘normal’, might reduce adherence with
medication because of embarrassment or disobedience. The pediatrician faces the challenge of
managing the medical treatment of adolescents with a chronic disease in a way that conforms
to the young patients’ perspective. Although nowadays the objective symptoms of disease like
joint inflammation or fever are often treatable or manageable with medical intervention, more
subjectively experienced symptoms like fatigue or chronic pain are frequently long lasting and
10
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