The Sibling Relationship After Acquired Brain Injury: Family Dynamics Across the Lifespan

173 Pages·2021·11.663 MB·English

by  Penelope Analytis

The Sibling Relationship After
Acquired Brain Injury
This important book gives a voice to the lived experience of sib-
lings and family members when one sibling has an acquired brain
injury (ABI). ABI is associated with a range of physical, cognitive,
behavioural and personality changes, many of which will be lifelong.
Penelope Analytis examines how this condition affects the sibling re-
lationship. Although siblings play an important role in our sense of
identity, development and wellbeing, this relationship has been largely
overlooked in the context of rehabilitation.
Combining research with stories of siblings’ experiences of life after
ABI, this book explores how siblings seek to continue their relationship
across the lifespan and make sense of the impact of ABI. It looks at the
concept of “post-traumatic growth” within the context of ABI and ex-
plores siblings’ perceptions of growth after ABI, including shaping their
life priorities, family relationships and values. It includes the perspectives
of siblings themselves who have an ABI, recognising them as active mem-
bers of this unique relationship, and of siblings of people with an ABI.
This is valuable reading for siblings and families impacted by ABI and
professionals working with them who would like to better understand how
to support siblings, as well as students in neuropsychology and related
fields.
Dr Penelope Analytis completed her Doctor of Psychology (Clinical
Neuropsychology) at Monash University, Australia and the Monash
Epworth Rehabilitation Research Centre. She works with people with
an acquired brain injury (ABI) and their families in both clinical and
research roles. Her research interests include family relationships a fter
ABI and peer support.
After Brain Injury: Survivor Stories
Series Editor: Barbara A. Wilson
This new series of books is aimed at those who have suffered a brain injury,
and their families and carers. Each book focuses on a different condition,
such as face blindness, amnesia and neglect, or diagnosis, such as encephalitis
and locked-in syndrome, resulting from brain injury. Readers will learn
about life before the brain injury, the early days of diagnosis, the effects
of the brain injury, the process of rehabilitation, and life now. Alongside
this personal perspective, professional commentary is also provided by a
specialist in neuropsychological rehabilitation, making the books relevant
for professionals working in rehabilitation such as psychologists, speech
and language therapists, occupational therapists, social workers and
rehabilitation doctors. They will also appeal to clinical psychology trainees
and undergraduate and graduate students in neuropsychology, rehabilitation
science, and related courses who value the case study approach.
With this series, we also hope to help expand awareness of brain injury
and its consequences. The World Health Organisation has recently
acknowledged the need to raise the profile of mental health issues
(with the WHO Mental Health Action Plan 2013-20) and we believe
there needs to be a similar focus on psychological, neurological and
behavioural issues caused by brain disorder, and a deeper understanding
of the importance of rehabilitation support. Giving a voice to these
survivors of brain injury is a step in the right direction.
Published titles:
The Sibling Relationship After Acquired Brain Injury
Family Dynamics Across the Lifespan
Penelope Analytis
For more information about this series, please visit: https://www.
routledge.com/After-Brain-Injury-Survivor-Stories/book-series/ABI
The Sibling Relationship
After Acquired Brain Injury
Family Dynamics Across the Lifespan
Penelope Analytis
First published 2021
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
605 Third Avenue, New York, NY 10158
Routledge is an imprint of the Taylor & Francis Group, an
informa business
© 2021 Penelope Analytis
The right of Penelope Analytis to be identified as author
of this work has been asserted by her in accordance with
sections 77 and 78 of the Copyright, Designs and Patents
Act 1988.
All rights reserved. No part of this book may be
reprinted or reproduced or utilised in any form or
by any electronic, mechanical, or other means, now
known or hereafter invented, including photocopying
and recording, or in any information storage or
retrieval system, without permission in writing from the
publishers.
Trademark notice: Product or corporate names may be
trademarks or registered trademarks, and are used
only for identification and explanation without intent to
infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the
British Library
Library of Congress Cataloging-in-Publication Data
A catalog record has been requested for this book
ISBN: 978-0367-89798-7 (hbk)
ISBN: 978-0367-89799-4 (pbk)
ISBN: 978-1003-02121-6 (ebk)
Typeset in Times New Roman
by KnowledgeWorks Global Ltd.
Contents
Introduction 1
1 Perceptions of typical sibling relationships across
the lifespan 6
2 Acquired brain injury: causes, variability in
outcomes and impact on the individual 24
3 The impact of having a sibling with an acquired
brain injury on the uninjured sibling 40
4 The sibling relationship after acquired brain
injury: supporting adaptation and reciprocity 55
5 The family as a system: the role of the family in
shaping the sibling relationship after acquired
brain injury 72
6 Social stigma, acquired brain injury and the
sibling relationship 89
7 Personal growth after acquired brain injury and
the sibling relationship 103
vi Contents
Conclusion: supporting the sibling relationship
after acquired brain injury 119
Useful resources 139
References 145
Index 163
Introduction
This book is about the sibling relationship when one sib-
ling has an acquired brain injury (ABI). ABI is an injury
to the brain which occurs after birth and has a range
of causes, including accidents, medical emergencies or
illnesses. For the person with the ABI, outcomes may
range from mild changes with limited impact on daily
functioning, to severe impairments with a significant im-
pact. The experiences of people with an ABI and their
siblings shared in this book largely reflect more serious
injuries. When a person sustains an ABI, life for them
and their family changes. Relationships within the fam-
ily change, as do relationships between the family and the
community. Life is different. The individuals and fami-
lies who are impacted by brain injury live these changes
and seek to find ways to navigate them, sometimes alone,
sometimes with support. Many who work in the field of
brain injury seek to find ways to improve how families
are supported, including researchers who work towards
developing an evidence base to better support people
with an ABI and their families.
This book stems from such a research project, which
I undertook as a neuropsychology student interviewing
siblings who have an ABI and siblings of people with
2 Introduction
an ABI, supervised by Dr Narelle Warren and Professor
Jennie Ponsford at Monash University, Australia. Although
the sibling relationship is important for most people, little
attention has been paid to it within the ABI research field.
Of the handful of studies which had looked at the sibling
relationship when I undertook my research, none had in-
cluded the perspectives of people with an ABI. Yet, like any
relationship, the sibling relationship is bidirectional: to un-
derstand how the relationship develops after ABI it is im-
portant to have the perspectives of people with an ABI and
their siblings. It is also important to recognise that people
with an ABI continue to hold the role of sibling, and for
this reason I refer to them in this book as “siblings with an
ABI”. I refer to their siblings as “uninjured siblings”.
The research involved interviewing 19 siblings with an
ABI and 20 uninjured siblings who were recruited from
across the state of Victoria in Australia in 2017 and 2018.
In some cases, siblings took part in interviews with their
brother or sister, in other cases they were interviewed
alone. In some cases, only one sibling was interviewed
and in other cases several siblings in a family took part.
The findings from the research interviews were published
in a journal paper (Analytis et al., 2020b). However, the
stories that were shared presented complex and nuanced
relationships which warranted being discussed further.
The purpose of this book is to bring these stories to you.
This book also aims to make research findings more ac-
cessible. Throughout the book, quotes from siblings with
an ABI and uninjured siblings illustrate research findings
from studies looking at ABI, as well as studies examining
sibling and family relationships more broadly. To protect
the privacy of those who took part in the research, I use
pseudonyms in the chapters.
Research is always a collaborative process and I am
grateful to Heads Together for ABI, a not-for-profit
Introduction 3
organisation supporting children and young people
with an ABI and their families, for their support and
in particular Kate Heine. I am also grateful to my re-
search supervisors Dr Narelle Warren and Professor
Jennie Ponsford for their guidance and support. Without
them, this research would not have been possible and their
dedication to improving outcomes for people impacted by
ABI is inspiring.
The book outline is as follows:
Chapter 1 examines the sibling relationship in general,
presenting research that has looked at aspects of the sib-
ling relationship which make it a unique family bond. It
explores sibling relationships across childhood, adoles-
cence and adulthood. By considering typical sibling rela-
tionships, Chapter 1 “sets the scene” for understanding
how ABI may impact the relationship.
Chapter 2 examines ABI and how it may impact the
individual in terms of cognitive and communication
skills, behaviour and personality, and mental health. The
chapter aims to present some of the commonly experi-
enced outcomes after ABI, as lived by siblings with an
ABI and uninjured siblings. In this way, Chapter 2 pro-
vides a basis for understanding the impact of ABI on the
sibling relationship discussed in later chapters.
Chapter 3 explores the impact of ABI on uninjured
siblings. The chapter starts by considering the emotional
turmoil siblings experience after their brother or sister
sustains an ABI. Then it considers how changes in family
life may lead to increased responsibilities for uninjured
siblings and changed sibling dynamics, before examining
the impact of ABI on the mental health and wellbeing of
uninjured siblings.
Chapter 4 explores research to date looking at the sib-
ling relationship after brain injury, situating this research
within the personal stories of siblings with an ABI and