Table Of ContentStop for a moment and think about the person you love most. It may
be a child, perhaps a wife, partner or husband, maybe your sister or
brother.Nowimaginefateintervening,andthisspecialpersonsuffersa
stroke, traumatic brain injury, or other form of acquired brain injury.
Those who survive come back to the land of the living, but irrevocably
changed as persons – different from the person whom the relative fell
in love with. Most academic textbooks fail to capture the effects that
thetragedyofacquiredbraininjuryhasonthosearoundthepatient–the
relatives.FamilyExperienceofBrainInjury:Surviving,Coping,Adjusting
does not. Through the powerful narratives of relatives telling their
unique stories, and commentaries by professionals, the lifelong journey
of grief, loss, compassion and hope that families go through is vividly
told. While this is a book primarily intended for those working with
families after brain injury, all clinicians, academics and researchers
working in the field of neurorehabilitation should read this book.
Dr Rudi Coetzer, Consultant Neuropsychologist and
Head of Service, North Wales Brain Injury Service,
Betsi Cadwaladr University Health Board, NHS Wales, UK
Family Experience of Brain Injury
Brain injury not only affects its victim, but those around them. In
manycases,relativesareoftenoverlookeddespitefacingmanyobstacles
accepting and adjusting to a new way of life. Family Experience of
Brain Injury showcases a unique collaboration between relatives of
brain injured individuals and professionals from the field of neuro-
rehabilitation. Family members from all different viewpoints tell their
story and how the brain injury of a loved one has affected them.
This book provides a space for those hidden and marginalised
voices, the people who are in for the long haul, often dismissed by
servicesandlefttocopeinisolation.Bycombiningexpertcommentary
with real life experiences, this book points towards sources of support,
normalisestheexperienceandprovidesacontextforunderstandingthe
grief and losses of family members. Not only will the hard-earned
knowledgeandwisdomevidentinthisbookhelpeducatehealthandsocial
carestaff,butithighlightshowlove,commitment,hopeandperseverance,
against a seemingly unbearable grief, can remain.
It is essential reading for individuals and families touched by brain
injury and will give multi-disciplinary professionals, such as medics,
nurses, psychologists, therapists, social workers, rehabilitation practi-
tioners and clinical supervisors, agreater understanding of their role in
helping the affected family.
Jo Clark-Wilson qualified as an Occupational Therapist in 1979, then
studied with the Open University to complete a degree in psychology
and research. She has had the privilege of working with individuals
with brain injury and their families for the past 30 years.
Mark Holloway By accident Mark became a support worker for
people with brain injuries nearly 30 years ago; he qualified as a social
worker in 1995 and continues to work with individuals and families
affected by brain injury.
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 rehabi-
litation, 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,
occupationaltherapists,socialworkersandrehabilitationdoctors.They
will also appeal to clinical psychology trainees and undergraduate and
graduatestudentsinneuropsychology,rehabilitationscience,andrelated
courseswho value the case study approach.
Withthis series, we also hope to help expandawareness of brain injury
and its consequences. The World Health Organisation has recently
acknowledgedtheneedtoraisetheprofileofmentalhealthissues(with
the WHO Mental Health Action Plan 2013-20) and we believe there
needstobeasimilarfocusonpsychological,neurologicalandbehavioural
issues caused by brain disorder, and a deeper understanding of the
importance of rehabilitation support. Giving avoice to these survivors
of brain injury is a step in the right direction.
Locked-In Syndrome After Brain Damage
Living Within My Head
Barbara A. Wilson, Paul Allen, Anita Rose, and Veronika Kubickova
Rebuilding Life after Brain Injury
Dreamtalk
Sheena McDonald, Allan Little, Gail Robinson
Family Experience of Brain Injury
Surviving, Coping, Adjusting
Jo Clark-Wilson and Mark Holloway
Formoreinformationaboutthisseries,pleasevisit:https://www.routledge.
com/After-Brain-Injury-Survivor-Stories/book-series/ABI.
Family Experience of Brain Injury
Surviving, Coping, Adjusting
Jo Clark-Wilson and Mark Holloway
Firstpublished2020
byRoutledge
2ParkSquare,MiltonPark,Abingdon,OxonOX144RN
andbyRoutledge
52VanderbiltAvenue,NewYork,NY10017
RoutledgeisanimprintoftheTaylor&FrancisGroup,aninformabusiness
©2020JoClark-WilsonandMarkHolloway
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authorsofthisworkhasbeenassertedbyhim/her/theminaccordance
withsections77and78oftheCopyright,DesignsandPatentsAct
1988.
Allrightsreserved.Nopartofthisbookmaybereprintedor
reproducedorutilisedinanyformorbyanyelectronic,mechanical,or
othermeans,nowknownorhereafterinvented,including
photocopyingandrecording,orinanyinformationstorageorretrieval
system,withoutpermissioninwritingfromthepublishers.
Trademarknotice:Productorcorporatenamesmaybetrademarksor
registeredtrademarks,andareusedonlyforidentificationand
explanationwithoutintenttoinfringe.
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ISBN:978-1-138-89666-6(hbk)
ISBN:978-1-138-89669-7(pbk)
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byTaylor&FrancisBooks
Contents
List of boxes viii
Acknowledgements ix
Foreword x
Preface xiv
1 Introduction 1
2 Acquired brain injury and families: The context 3
3 Does the family become part of the team, or the team
become part of the family?: An interview with a father 17
years after brain injury 22
4 Behaviour, vulnerability and the criminal justice system 44
5 Grief without end 60
6 Support of siblings 77
7 Children’s challenges 92
8 The impact of acquired brain injury on the family:
Common themes, threads and differences 113
9 What may help? 138
10 In conclusion 158
References 162
Index 169
Boxes
6.1 Professional reflection: relationships with family 81
6.2 Professional reflection: differences in outlook 82
6.3 Professional reflection: ambiguous loss 88
6.4 Professional reflections: meaning of life 89
7.1 Professional reflection: need for safety and immediate
support 100
7.2 Professional reflection: safeguarding 101
7.3 Professional reflection: discrepancies 104
7.4 Professional reflection: knowledge is power 111
Acknowledgements
We would like to acknowledge all those families that have enabled us
to learn from their experiences over time, as this has allowed us to
develop greater understanding of what might help others to cope,
survive and even flourish after brain injury. To them we owe a lifetime
of gratitude.
Wewould alsolike tothankDrDoreenBaxter,forher reviewofour
work and help in the writing of the book; and Janine Heritage and the
staff at Head First, who have provided ongoing support and
encouragement.
