praise for the author · 2020. 5. 12. · they are talented, creative writers and i wish them every...

PRAISE FOR THE AUTHOR

“This excellent book tells parents what they need to know to help their children become more confident in coping with health care procedures. Highly recommended for all parents, and for the health care providers who interact with them.” Carl von Baeyer PhD, Professor of Clinical Health Psychology, Professor

of Paediatrics and Child Health,University of Manitoba, Canada

“This book contains a wealth of information that I very much wish our family had been equipped with at the beginning of Tristan’s journey. It will help make medical encounters easier to navigate for families and children living with a medical condition requiring ongoing treatment.”

Angela McNicol-Smith, Tristan’s Mother

“A wonderful clear explanation of current neurological understanding confirms what we already know − that the medical procedure world is a jungle and our children need their parents and all adults to support and advocate for them for minimal trauma and maximum benefit. A must read for all who care for children.”

Sharon Wood, Registered Nurse and Mother

“This book, simply and clearly, explains how parents can remain confidently ‘hands on’ to prepare, guide and give comfort to their children and ultimately support a child’s experience of medical procedures.”

Rod Carne, Clinical Psychologist

“When my daughter was four she was required to have exploratory surgery. As her parents we were underprepared as was she for what was to come. The whole experience has deeply impacted on my daughter where even as a nine-year-old she still makes reference to her operation. I wish Angela’s book was available to us then. Things would have been a lot different!”

Anthony McLean, Parent, Author, Persuasion Strategist

Praise for the Author

Global Publishing GroupAustralia • New Zealand • Singapore • America • London

EVERYBODYSTAY CALM

How to support your young child through medical tests and procedures

"As a mother, I have a strong instinctive drive to protect my child. I have felt that I have betrayed the trust that my son has in me by subjecting him to painful procedures. The powerlessness I have felt – and that my son has felt – has been terrible. I felt both relieved and liberated to have this reframed for me in this book. It was wonderful to know how much I can do to help, and how supporting my child through challenging situations (like medical procedures) provides opportunities for him to develop resilience and strength" "In our work with adults with intellectual and other disabilities, we see so many people who are so fearful of blood tests, imaging studies, procedures, and even the dentist, that they need sedation or anaesthesia in order to benefit from these interventions. As I read this book, I thought how many children and adults with disabilities, and their families, would benefit from the empowering, respectful and supportive approach outlined in this book."

Dr Jane Tracy MBBS DRACOG GCHE,Director, Centre for Developmental Disability Health,

Monash University.

"Angela Mackenzie has combined medical and psychological evidence with common sense, experience, insight, and empathy to write a comprehensive guide to the best experience for children undergoing medical procedures."

"The well constructed book with illustrations, examples and summaries ('at a glance') is 'for everyone who looks after young children' and is directed particularly at parents and caregivers. It would be valuable to guide conscientious parents, but its comprehensive content suggests a potentially important role generally to inform doctors and nurses in hospitals and in health care services where children are subject to needles and other potentially painful procedures, and to enable them to work effectively with parents."

David Champion MB BS MD FRACP FFPMANZCA, Director, Pain Research Unit, Department of Anaesthesia and Pain Medicine, Sydney

Children`s Hospital, Associate Professor, School of Women`s and Children`s Health, University of New South Wales.

EVERYBODYSTAY CALM

How to support your young child through medical tests and procedures

Dr Angela Mackenzie

For Helen, Alice and Frank.

DISCLAIMER

All the information, techniques, skills and concepts contained within this publication are

of the nature of general comment only and are not in any way recommended as individual

advice. The intent is to offer a variety of information to provide a wider range of choices now

and in the future, recognising that we all have widely diverse circumstances and viewpoints.

Should any reader choose to make use of the information contained herein, this is their

decision, and the contributors (and their companies), authors and publishers do not assume

any responsibilities whatsoever under any condition or circumstances. It is recommended

that the reader obtain their own independent advice.

First Edition 2014

Copyright © 2014 Dr Angela Mackenzie

All rights are reserved. The material contained within this book is protected by copyright law;

no part may be copied, reproduced, presented, stored, communicated or transmitted in any

form by any means without prior written permission.

National Library of Australia

Cataloguing-in-Publication entry:

Mackenzie, Angela, author.

Everybody Stay Calm: How to support your young child through medical tests and procedures

/ Angela Mackenzie.

Licence Permission

Excerpt from Hannah’s Gift Reprinted by permission of HarperCollins Publishers Ltd ©2002

Maria Housden.

Cartoonist Richard Mitchell

Illustrator Matthew Stewart

1st ed.

ISBN: 9781922118356 (paperback).

Child health services − Psychological aspects.

Children − Diseases − Treatment.

362.19892

Published by Global Publishing Group

PO Box 517 Mt Evelyn, Victoria 3796 Australia

Email [email protected]

For Further information about orders:

Phone: +61 3 9736 1156 or Fax +61 3 8648 6871

IX

Acknowledgements

ACKNOWLEDGEMENTS

My heartfelt thanks to all the families I have met through my work as a paediatrician, whose stories and courage are the heart and soul of this book.

Special thanks to the families who attended the procedural pain management workshops and showed me what was possible and to Beth Dun, music therapist, who created the friendly, playful environment where it could happen.

Tessa Speller deserves a special mention. She kick-started everything when she invited me to work with the families in the Haemophilia Centre. Chris Barnes continued the support when he became Director.

The ongoing support of Liz Bishop, Michelle Sullivan, Angela McNicol-Smith and their families has been invaluable. I am deeply grateful for these connections.

Leora Kuttner, Canadian psychologist, has been an inspiration with her films, books and teaching – she has always involved parents.

Physiotherapist Alex Kountouris inadvertently gave me the idea to write a book for parents when he asked for information that would help a reluctant 15-month-old have his vaccinations – I put together a package and sent it to him.

Psychologists Ruth Buczynski of the National Institute of Clinical and Behavioural Medicine and Bill O’Hanlon, author and public speaker, have touched me through their commitment to reach ever-wider audiences with the very latest theories and research.

www.EverybodyStayCalm.com XI

Dr Angela Mackenzie

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Gratitude to my colleagues for answering the call to share knowledge and expertise including Julie Linden, Baruch Krauss, Anna Axelin, Sandy Hopper, Amber Hill, Allan Cyna, Liza Newby, Ed Harari, Rod Carne and Shani Thornton. I take responsibility for the way I have interpreted and presented the information in this book, however much I owe to others.

Over the last few years certain people have appeared at just the right time with exactly what was needed to keep the book alive: Lauren Artress, Patricia Cameron-Hill, Jimmy B Prince, Tina Christensen, James Warnke, Kevin McEvenue, Karen Whalen, Jarrod Broadbent and his team and Jeff and Kimberly Saward. Thank you.

There would be no book without three young people, who gave me invaluable tips to get the ideas and facts out of my head and down on paper: Mikhaela Delahunty, Ruben Ayers and Helen Shann. They are talented, creative writers and I wish them every success.

Thank you to those who read early drafts – Kirsten Krauth, Beth Dun and Karen Cohen and those who came on board later – Sharon Wood, Jess Dunn Editing, Gwen de Lacy, Carl von Baeyer, and Fiona Drury of Write Angle.

It was a turning point for me when Richard Mitchell joined the team with his insightful cartoons and whimsical drawings, to complement and lighten the text.

A special thank you to Darren Stephens and the team at Global Publishing for keeping it on track, keeping me accountable and somehow making this happen. An extra thank you to Lesley Johnson for her patience and knack of saying just what I needed to hear.

And finally my loving thanks to friends and family I have not already mentioned, who have been there for the entire journey and always found an encouraging word. Writing this book has given me a deeper appreciation of connection and gratitude.

Acknowledgements

TABLE OF CONTENTS

Preface 1

Introduction 3

Chapter 1 What are Medical Procedures? 9

Chapter 2 The Parent-Child Unit 19

Chapter 3 From a Child’s Perspective 29

Chapter 4 The Challenge to Adults 43

Chapter 5 Getting on the Team 55

Chapter 6 Preparing for Procedures 66

Checklist: What to Take with You 76

In Case of Emergency 76

Chapter 7 Your Emotions 81

Chapter 8 Holding Your Child 91

Chapter 9 Communication 99

Chapter 10 Distraction 109

Chapter 11 Medications 121

Chapter 12 The Unexpected 133

Chapter 13 Distress 141

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www.EverybodyStayCalm.com 1

Dr Angela Mackenzie Preface

PREFACE

What’s this book about?

This book is to teach parents how to help their children cope with medical procedures. That is, any tests and treatments carried out on children to prevent, diagnose and treat illness.

It is about bringing parents into the picture, not as extras but as main players in all interactions with healthcare professionals until children are old enough to do this for themselves.

It is about medical procedures being part of a healthy developmental process, because medical procedures become a toxic stress in the absence of supportive relationships − for both the child and the caregiver.

Who is it for?

This book is for everyone who looks after infants and young children: parents, caregivers, grandparents, anyone with a guardian role who is the ‘safe other’ in a young child’s world. For ease of reading I usually say parents.

You are a constant in your child’s life and take them to their healthcare appointments. You have a huge influence on your child’s development and are highly motivated to reduce their suffering. Your involvement has the added advantage of reducing your own distress, which means your children cope better.

Chapter 14 Speaking Up 149

Chapter 15 Different Contexts 159

Having Surgery 160

Medical Imaging 164

Dentistry 166

Babies in Hospital (Neonates) 167

Children with Disabilities 169

Chapter 16 Down the Track 175

Glossary 185

Appendix: Where to Find Professional Help 189

Bibliography 193

About the Author 195

About the Cartoonist 197


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Introduction

INTRODUCTION

For the last 20 years, I have been interested in how patients can help themselves and as a paediatrician, this naturally extended to how parents could help their children. I did some research into why parents of children with cancer used alternative and complementary therapies. In the course of the interviews, several themes emerged and two stood out for me:

Parents wanted to be involved in the care of their children; they did not want to ‘hand their children over’ to the medical profession, even though they were grateful for the care and treatment.

They were distressed watching their children suffer through many painful procedures during treatment, which could last for years.

At the same time in my clinical work, I saw many children who had developed a fear of medical procedures. Some were coping with a serious illness such as cancer, which had been diagnosed out of the blue. Others had been diagnosed as infants with a chronic condition and needed lifelong medical treatment.

It was clear that we needed to teach parents how to help their children cope with medical procedures because if they were involved in the care of their children then everyone’s suffering would be reduced. It may seem obvious but it is not what happens. Children are usually referred to healthcare professionals for help with procedures after problems develop but it is much harder to treat anxieties, phobias and trauma than it is to prevent them.

Why is it important?

How children learn to cope with medical procedures is too risky to leave to chance, it is too important to leave just to the healthcare professionals.

Parents are no longer prepared to ‘hand children over’ to the medical profession as they once did. They want to be present and involved.

They also need to be informed about how to comfort and support their children through medical procedures. Parents are much more upset afterwards when they realise there was something they could have done, if only they had known.

Whether or not children sense something is threatening has much more to do with feeling secure than with the procedure itself. For a child, it has to do with the way the adults and caregivers are behaving and how available they are as a physical and emotional support.

My intention is to empower and inform parents how to provide this comfort and support at this critical stage in a child’s life, when laying down solid developmental foundations in the brain depends on healthy supportive relationships.

Whether it is an injection, a heel or finger prick, wound suturing or dressing, or one of the many other common hospital procedures, such as inserting a naso-gastric tube or an intravenous cannula, even major surgery, you can make a difference to how your child experiences, responds and remembers the procedure.


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Introduction

What would happen if we got in early and taught parents what to do before there was a problem, even before their children needed procedures?

I was given the opportunity to put my ideas into practice during my years at the Royal Children's Hospital in Melbourne. The Department of Clinical Haematology was happy for me to run workshops for families of very young children recently diagnosed with severe bleeding disorders. The children ranged in age from babies to four years old, and from the age of 18 months most of them needed regular intravenous treatment several times a week.

My goal was to educate parents about what they could do to minimise procedural pain and distress in their children. There were no reports of anyone running workshops like this before, so my music therapy colleague Beth Dun and I put together a program and presented it in a playgroup-like format with toys and music. It was based on research where it existed, our combined clinical experience and common sense.

Over the years, we modified the content based on parents’ experience and feedback and the growing scientific literature on neuroscience and early child development.

What the families achieved was beyond my wildest imagination. It was so much more than pain management. Before pain there is fear, before fear there is a sense of danger, before a sense of danger there is a threat.

The children no longer perceived medical procedures as threatening so fear and pain were no longer major issues.

Parents became more confident and relaxed, the infants felt secure, and the young children developed great coping skills. The usual maladaptive cycle of threat–danger–fear–distress–pain–aversion–avoidance had been broken.

For decades, the focus had been on the procedure and the priority had been on getting it over with. Lip service was paid to keeping the child feeling safe and secure. Safety meant physical safety, not emotional safety. When you start thinking in terms of reducing a child’s perception of threat, everything changes. There are real clues as to what to do and it’s possible to get it right for each child because the child sends signals.

The signals are not random – and someone needs to be there to read those signals moment by moment. It needs to be someone who is in tune with the child and her rhythms. It is the quality of the child’s relationship with the parent that provides safety and security. The parent-child bond is pivotal to young children learning to cope with medical procedures and it is critical that medical procedures are not allowed to fracture it.

Medical procedures are not intended to be dangerous or harmful, quite the opposite. We need to remove the threat, uncertainty and fear factors, which in turn alter the perception of pain. The earlier this begins in a child’s life, the easier it will be to prevent anxiety developing.

Empowering our children for their future

It is estimated that one in four adults avoids getting medical or dental help wherever possible and one in ten adults are diagnosed with needle or blood phobia. Most can recall an


Dr Angela Mackenzie

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Introduction

aversive incident experienced in childhood. In a hospital survey, three-quarters of parents revealed that their children experienced pain or anxiety when having medical procedures.

It does not have to be like this. Although there is always more to learn, we know enough now to make a difference to parents and children learning to cope with medical tests and procedures. Whatever your own beliefs, thoughts and perceptions about medical encounters, the truth is that with the knowledge and resources available today they do not have to be painful or scary. Children can grow up confident and able to cope with whatever health issues arise, and have the freedom to make treatment choices not based on fear.

Learning to cope with medical procedures and tests, even if a little painful, can be a source of mastery and confidence, just like learning to swim. The approach in this book offers some potentially life-changing alternatives to the traditional practices. They are already in place in some organisations but not universally adopted. Even within one institution, the approach may be different between departments or at different times of day, depending on staffing.

My goal is to make information available to parents so that they can be a useful member of the team. More and more healthcare professionals in recent years have championed putting scientific knowledge in the hands of the people who need it – the patients.

Normalising medical procedures is one of the greatest gifts you can give your child. My theory is that the more people who know how to support young children in the medical setting and are empowered to do it, the faster sustainable change will come about.

This book contains all the information you need to support your child through medical procedures so that everyone has the best chance of remaining calm and relaxed so the procedure is completed successfully and with minimum fuss. It is divided into 16 chapters, each containing information, tips, case studies and real-life scenarios provided by patients, parents and healthcare professionals.

At the back of the book are resources and links to useful organisations. You may also like to visit our website at www.EverybodyStayCalm.com to find out about any latest research, workshops and support networks and to connect with other parents and caregivers through our discussion board.

How to use this book

I suggest you read the whole book once. None of the techniques stand alone, and you can be more flexible and creative when you know the whole concept. Focusing on some areas yet ignoring others can undermine the great work you do put into practice. It may take several procedures for you to feel as confident as you would like. Come back and refer to it as often as you need.

The approach is not prescriptive. It is much like a cookery book, with information about essential ingredients and suggestions for basic recipes. Parents have varied responses to their child having medical procedures and you will come to know what works best for you and your family.

www.EverybodyStayCalm.com

Dr Angela Mackenzie

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At a glance

Parents want to be involved in the healthcare of their children and are the obvious people to support them through medical tests and procedures so these are not perceived as a threat.

Medical procedures can become a source of confidence and mastery when children are taught coping skills, just like learning to swim.

Educating and empowering parents about medical procedures delivers information where it is needed most and is the key to sustainable change.

I suggest you read the whole book first, to understand the approach, and then use it as a reference guide to suit the needs of you and your family.

CHAPTER 1What are Medical Procedures?


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Chapter 1 - What are Medical Procedures?

CHAPTER 1

What are Medical Procedures?

‘I believe if you show people the problems and you show them the solutions,they will be moved to act.’

Bill Gates, Business magnate and philanthropist

Throughout his or her life, a child will have many encounters with the medical world. For the most part, it will involve no more than routine procedures, such as immunisations, and a number of rare hospital visits for accident or illness. Some children will have a more involved experience with hospitals and doctors, with regular and prolonged hospital stays, frequent blood tests, the use of intravenous medicine and surgical procedures.

By medical procedures, I mean all those tests and treatments that are carried out on children for the sake of their health, using modern equipment and machinery. It may be to prevent illness such as immunisations, to diagnose and monitor illness such as blood tests, or to treat illness such as intravenous medicine. These save countless lives but also have the potential to cause untold suffering. No one wants to frighten or upset children, let alone hurt them, yet this is what happens even as we say, ‘It’s to make you better’ or, ‘It’s to stop you getting sick’ or, ‘It’ll soon be over’.

Even so-called minor non-invasive procedures can feel intrusive and stressful to a young child. Dressing a wound, taking an X-ray and putting plaster on a broken arm would be considered non-invasive. An invasive procedure involves the equipment entering the body through skin, for example with a needle, or through an opening such as a mouth or nose, for example with a tube.

(Make a mental note if you found yourself screwing up your nose at the thought of an invasive procedure, because the ‘yuk factor’ is passed on to children by adults and makes procedures appear more threatening.)

Minor and major are not useful descriptors of medical procedures when it comes to young children, who see and feel things from their own perspective. What’s minor to us can be major to them when they feel terrified. Luckily, it works both ways. With the right support, a young child can experience a major procedure as minor.


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Twelve common medical procedures in children

Procedure Description

Immunisation and injection

A vaccine is injected into the body to immunise (protect by triggering an immune response) against a particular disease. In Australia, this is known as an immunisation. An injection forces a fluid into a passage, cavity or tissue, often using a needle and syringe.

Blood test A collection of a sample of blood for analysis. Usually by needle from a vein, or by heel or finger prick to collect a capillary sample.

Intravenous cannulation

A small tube is inserted into a vein. It is guided in by a needle that is removed, leaving behind the soft tube, through which fluids or medicine are given.

Medical imaging Technologies used to look inside the body for clues about a medical condition. X-ray, ultrasound and different types of scan – MRI (magnetic resonance imaging), CT (computerised tomography), nuclear medicine.

Urine collection Collection of a sample of urine for analysis. This may be done with a bag, a catheter or a needle into the bladder.

Tube insertion and removal, e.g. naso-gastric intubation

The insertion of a plastic tube through the nose, past the back of the throat and down into the stomach.

Stitches/sutures Bringing together the edges of a cut using sterile needle and thread.

Dressing A material placed over a wound to cover and protect it. Changing dressings to clean ones is also a common procedure.

Swab A wad of absorbent material attached to the end of a stick used to take a sample of fluid, e.g. throat swab to look for pathogens, or to dab medicine onto a wound.

Lumbar puncture A needle is inserted between two lumbar vertebrae (bones) in the lower back into the spinal canal to collect cerebrospinal fluid (CSF) for analysis, or to relieve pressure. Medicine may be injected into the space.

Biopsy The removal of a piece of tissue from the body for diagnostic study.


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One procedure at a time

Medical procedures are performed one at a time, and this is the best way to approach them. No two procedures are the same. Some things vary with different types of procedures: how long they last, the equipment used, where they take place and who performs them. Your child’s age and developmental needs change over time. Even if your child is having a procedure she has had before, there is no guarantee that things will be the same as last time, even on the same day. There is always the potential to cause pain, fear and suffering and there is always the possibility that a procedure will go well. What I want to emphasise is that how a child copes is not random, or simply a matter of temperament, genetics or medications. It depends on a child’s sense of security, which in turn depends on supportive relationships. My suggestion is don’t leave it to chance – have a plan.

You will find a Comfort Action Plan on my website www.EverybodyStayCalm.com to download and fill in.

What is a successful procedure?

In my view, there are two main determinants of a successful procedure. The first is whether the purpose of the procedure is completed satisfactorily and the second is whether your child feels safe and secure.

Because procedures are carried out by trained professionals in controlled circumstances, the physical risks are generally very low. What we need to turn our attention to is creating environments where young children feel emotionally safe and perceive medical procedures as friendly and non-threatening. The need for a positive learning experience in this young age group cannot be over-emphasised.

We used to think it was kinder to physically restrain a child and ‘get the procedure over with’. How wrong we were! It is useful to have an expert technician and someone who can complete the procedure quickly and accurately but not at the expense of a child’s trust.

The Importance of Trust

Liz Bishop’s two sons Alex and Hamish, born six years apart, both have severe haemophilia. One of the clotting factors is missing from the blood and needs to be replaced by intravenous injection three times a week. Liz experienced two very different ways of managing procedures.


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When Alex was first diagnosed, we were much more hospital based and treatment was always in Emergency. He used to be wrapped in a sheet if he got distressed. I wasn’t able to comfort him. It changed Alex from a happy little boy into a boy who was scared of hospitals, scared of needles and scared of treatment.

With Hamish, we were given the courage to break from the traditional mould of treatment. He is much more relaxed about it because I have been encouraged to be relaxed with him, to hold him and make him more comfortable, to make it an easy part of his life rather than a separate part. Unlike his older brother, he slept through his first treatment cradled in my arms and in subsequent treatments he has sat cuddled on my knee while we sing songs.

Everyone knows when a procedure has gone smoothly. Stress is minimal and children recover well. If awake, your child can communicate and interact with you in a social way. This does not necessarily mean that your child experiences no fear or pain but it is manageable because you are cushioning the impact. The ultimate test is how a child feels about going back again for another procedure. Even babies learn to show aversive behaviour at the start of a procedure if they have had a previous negative experience – attempting to pull away. If you consciously think about what is needed to make each procedure successful, then you can put it into practice, repeat it and help your child master it. Understanding brain development in these early years and how your child experiences the world will guide you.

At a glance

A medical procedure is the term used by healthcare professionals to describe everything they do to patients to prevent, diagnose or treat illness, using technical equipment or machinery.

A list of the 12 most common procedures performed in a children’s hospital.

The actual context of every procedure is different but the fundamentals of coping are the same – don’t leave it to chance. Have a plan.

A successful procedure is one where there is a good technical result, your child feels safe and secure, and is willing to go back next time. She trusts you to protect her.

CHAPTER 2The Parent-Child Unit


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CHAPTER 2

The Parent-Child Unit

‘Children are born malleable. They are not resilient ...for better or for worse they are being imprinted

by emotional and social transactions in their brains.’

Allan N. Schore, Neuropsychologist

Your baby is in the womb for nine months, totally dependent for a further nine months and unable to fend for himself for years. We are the only mammal that is helpless for so long. Don’t underestimate the bond that develops between you and your child. It may be invisible but it is there and needs nurturing and protecting.

Brain development starts at conception and continues at a great rate for the first three years. Babies are bathed in the nutrients and emotional world of the mother. If they are played music or read a story frequently in the last weeks of pregnancy, it appears that they recognise and are soothed by it in the months after birth.

Supportive relationships are essential for brain development. They determine how the trillion or so cells in the brain connect. The neural circuitry that is laid down in the early years is the foundation for all subsequent brain growth and function. The brain is not all hardwired at birth as we used to believe; in fact, most of the brain is waiting to be joined up. A child’s

social and emotional experiences are wired into the circuitry, even in the womb, and contribute to his view of the world as essentially friendly and fun to explore, or scary with possible danger around the corner.

You share your brain

If you are a new mum you may not feel like an expert, but you are everything to your baby. It is important to maintain and grow that bond. It is something parents comment on when they discover how they can cushion the impact of fear and pain at procedures: they had ‘no idea the bond between mother and child was so strong’.

Today it’s possible to see what that invisible bond looks like and the truth is really quite extraordinary. Synchronised brain scans of a parent and infant in close proximity show the right brain of the parent communicating with the right brain of the child – you share your brain. The brain is involved in protecting us from harm and learning what to avoid. Both the parent’s and the infant’s brain are working at the same time to assess the level of threat, and the parent’s physical and emotional reaction to the situation is able to shape the child’s experience and teach compassion.


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Safety and the brain

The brain has three layers: the neocortex or higher thinking brain; the limbic system, which is the emotional centre; and the brain stem, responsible for basic survival.

The brain and autonomic nervous system is hardwired to detect threats and safety even in the womb. A child’s senses are subconsciously checking the environment non-stop for clues and taking in sights, sounds, smells and other sensations to make sense of the world. A small structure in the limbic system called the amygdala has a round-the-clock job of interpreting those clues.

Neurophysiologist Stephen Porges has coined the word neuroception to describe the young child’s ‘subconscious system for detecting threats and safety’. When there is no threat the brain stays in the neural circuit for safety and your child is relaxed and free to engage or play with you, but it takes only one-tenth of a second for the brain to go into action when it senses danger – stay and fight or run for it. If there appears no hope of winning a fight or escaping the situation, the brain’s last resort is to shut down – freeze or play dead.

A baseline of calm

Emotionally responsive parenting can guide the emotions and primitive impulses of the child’s lower brain, which can be overwhelming without a calming influence. Your child needs help to develop the pathways to manage powerful feelings. This

means tuning into him, recognising the feelings and sensations he is experiencing as best you can and responding to the information he is giving you. Parenting has a huge influence on building helpful connections between the higher and lower brains - every time you feed your hungry child, give your tired child a chance to sleep, enjoy your child’s excitement, and help him moderate his fears, frustration and sorrow.

Emotions and sensations are not meant to last forever and you are helping bring your baby’s biology back into balance by taking actions to meet his needs. A young child learns to regulate his emotions in the first two years by expressing his feelings and needs and having a warm responsive parent or caregiver take care of him. When you are calm, your brain releases soothing hormones. These trigger your baby’s brain to release his own soothing hormones, called oxytocins and opioids, which brings his bodily arousal back to a baseline level of calm.

In his autobiography The Rugmaker of Mazar-e-Sharif, Najaf Mazari writes, ‘For I like peace, it is part of me, something that was inside of my brain and my heart when my mother gave birth to me’.

Building resilience

Parents learn to read their young children’s cues with practice, from the wobble of a bottom lip, to different cries and facial expressions. You don’t have to get it right all the time but if your child is unsettled or distressed, you do need to have another go at reading the situation and find something that does work, so your child is not left in a state of tension for too


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long. Reconnecting and responding warmly will result in your child coming back into a state of balance. It is the foundation of building resilience – the ability to recover after experiencing stress. If a child does not have a chance to recover from stress, and the stress hormone level does not drop back to a baseline of calm over time, then the system adapts. The baseline is reset to a higher level and he becomes more sensitive to stress in the future, and the chance of developing anxiety and phobias.

Stress is only ‘good for you’ when learning how to cope with a potentially threatening situation is wired into the brain. This makes it easier next time. These sorts of experiences are an essential part of normal, healthy development.

The challenge of medical procedures can be a positive stressor when a young child has the right support. Home is a great place to start thinking about how you want your children to view the situation and respond in a medical environment.

A Practical Approach

Simon was looking after his two young grandchildren. Everyone was out in the garden when Rose started to cry in pain. He realised that she had rubbed her eyes with her hands after touching the chillies in the vegetable patch. He raced inside and Googled ‘antidote to chillies’. The answer was milk. He bathed the two-year-old’s eyes with milk and before long everyone was happily playing outside again. It would have been a completely different experience if he had panicked about what to do. Rose may even have thought it was her fault and that the pain was some kind of punishment.

The more you and your child learn to cope with everyday hurts, the easier it is to stay calm and support your child if there is an accident or a need for more invasive procedures as part of illness or injury.

Tracey learnt to practise her responses when her son bumped himself.

Calming the Family

Tracey’s baby boy was born with a bleeding disorder. This meant that even with just a slight bump he might get a large bruise and need to have treatment to stop the bleeding. She was therefore much more watchful and at first would show her worry and fear, which alarmed her three-year-old daughter. She learned that she could stay calm and involve her daughter in a helpful way, inviting her to be part of the examination of her baby brother rather than excluding her and making a fuss of the baby. ‘Oh Sam’s bumped himself. Let’s have a look together and check he’s not hurt.’

Wired for joy

Children are not just wired for survival, they are wired for joy. During the first two years when they are the most vulnerable to stress and negative arousal, they are equally open and susceptible to enjoyment. Learning to interact comfortably with people is a left-brain activity, which needs to be nurtured. This is just as important at medical procedures as it is to protect your child from too much stress and negativity. Children are constantly on the lookout for comfort, affection, fun and playfulness.


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This is what I discovered through my workshops in association with Beth Dun, a music therapist. We used live music to break the ice, and provide a positive focus that was relevant to all ages. We thought music would be a useful tool for parents to use during a procedure and it turned out to have more far-reaching consequences than we predicted. The playgroup nature of our workshops with toys and singing and guitar playing, transformed the way parents and children saw the hospital. The comments were impressive:

‘We’ve never come to hospital to have fun before.’

‘It humanises the hospital.’

‘She gets excited when we drive past.’

‘He claps his hands when we enter Emergency.’

Don’t underestimate how important you are to your child in co-creating these positive expectations, especially in those early years when the brain's foundations are being laid. In some ways, it doesn’t seem like there’s much going on and that it would go on without you but nothing could be further from the truth. I would like parents to realise how much it matters in this young age group, when some people think it doesn’t matter at all. Even if you think that there is nothing normal or natural about having a medical procedure, your child will have a very different experience when you present them positively.

Fun in the Tunnel

Sue called for advice a few weeks before her son was due to

have an MRI. The play therapist told her that the way parents react and respond could have an impact on the way their child reacts and responds. She had really taken that on board in helping prepare her son for the procedure. She is a Steiner teacher and understands the impact of imagination. She told him a long story about a boy who went into a special tunnel where he had photos taken of the inside of his body. Joshua had become so excited he asked if he could have a turn in the tunnel. She replied that she’d have to call the hospital to see if that was possible. She repeated the story after a week, and then again just before his appointment a few weeks later. So he was really looking forward to the experience!

Normalising medical procedures

When every effort is made to make medical procedures appear safe and friendly from a young child’s point of view, they are not perceived as a threat, and the nervous system stays in the safety circuit. Let’s shift the focus from managing pain and distress to keeping your child in the safety circuit and preventing pain and distress as far as is humanly possible. This is something parents are familiar with, just not usually in the medical context. This means recognising possible threats, fear triggers and other negative experiences for young children at procedures, as well as the obvious ones like pain. And at the same time, create opportunities to keep your child socially engaged and his defence mechanisms


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turned off.

At a glance

Infants are dependent on their primary caregivers – usually the mother. They develop a strong bond, with the mother’s brain communicating directly with her infant’s brain.

Relationships have a huge influence in shaping the developing brain. Early social and emotional experiences are wired into its structure.

Your calm and emotionally responsive parenting teaches your child how to cope with stress and emotions because he is able to soothe himself.

When it goes well, parenting creates resilience and encourages a natural capacity for joy.

We can change the focus from managing the pain and distress of a procedure to creating an experience associated with comfort and play.

CHAPTER 3From a Child’s Perspective


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Chapter 3 - From a Child’s Perspective

CHAPTER 3

From a Child’s Perspective

‘Any interference with a child’s body, whether major or minor, is likely to arouse fantasies and fears.’

Anna Freud, Child psychoanalyst

Young children have alarm systems in place by the time they are born, but do not yet have the control networks connected. It is like having a smoke detector but no way of knowing if the toast is burning or the house is on fire. Children need help to:

sort out real from imaginary threatsprevent fears from becoming anxieties and phobiasdevelop a reliable sensory systemlearn to love and trust their bodies.

Fear is a normal emotional response to a perceived threat. Fears are common in early childhood and can be innate or learned.

Innate fears

Innate fears are wired into the brain and are programmed to appear at different stages of development. Fears that are most relevant or common at procedures are separation, strangers, bodily damage and pain.

Fear of separation

Your baby does not like being separated from you when she

doesn’t feel safe. She will happily go to other people when there is nothing threatening on the horizon but if she senses danger, she wants you. If you are there and calm, her nervous system switches back to the safety circuit. Therefore, you need to stay close or in physical contact depending on the demands of the situation. As children grow up they are able to venture further away but come back to the familiar base of the parent for many years as they become more independent.

Fear of strangers

This fear begins around seven to nine months of age. It is the beginning of learning who they can trust in the world, which is essential for self-protection. A child’s brain is wired to detect if people are familiar and trustworthy, based on their facial expressions, vocalisations, and even how their bodies and limbs are moving. It is at this developmental stage that children start to watch to see what your reaction to a situation is in which they are feeling uncertain. It is called ‘social referencing’.

The Visual Cliff experiment

A Visual Cliff is a piece of experimental equipment designed in 1960, which makes infants very uncertain about whether to keep crawling or not.


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It is physically safe for the infant to crawl out over the ‘cliff edge’ because of the glass, but his innate sense of depth perception stops him. His mother on the far side of the Visual Cliff is coaxing him to crawl over the edge and come to her with her smiles and gestures. Skydivers override their primitive instincts every time they jump out of a plane and trust their judgement that the parachute will open. Likewise, the baby trusts his mother. It demonstrates the power of a secure relationship in the face of uncertainty.

Do not confuse fear of separation with fear of strangers. Just because a child does not experience ‘stranger anxiety’ before seven months does not mean that there is no harm in separating a child from his parents to perform medical procedures. If your infant is separated from you in a threatening situation, his stress hormone levels skyrocket. If fear of strangers has kicked in, this compounds the fear of separation. You might imagine that once fear is activated, another fear doesn’t make it worse, but fears don’t just add up, they multiply.

Fear of bodily damage

Young children have an innate fear of damage to their bodies, which is particularly noticeable in toddlers. You may be familiar with the bandaid stage, when children love playing with bandaids and having them put on little cuts and grazes. Children learn to respect their bodies by having them treated respectfully by adults at all times. At first, they think of their bodies as a bag of skin holding everything in, so any damage to the outer layer is very threatening, even if we know it is ‘nothing serious’. With guidance, they can learn that not all their insides are going to come out, that blood is lovely, red, and helpful, and the body knows how to heal, given the right support.

Fear of pain

Pain is meant to hurt. It is the brain’s most effective way of getting our attention fast and in some contexts fear of pain may be useful for moderating behaviour, to avoid danger and injury. At medical procedures, pain and fear of pain serve no useful purpose. It can quickly lead to a state where children feel anxious in anticipation of a procedure, especially if they have not been adequately supported. Children around the age of five to six years who have been managing well with procedures may show new fear responses, including a fear of pain. As they become more cognitively aware, their own unhelpful thoughts may activate fears.

Learned fears

Learned fears depend on the environment in which you grow up. Raised in England, I did not have a healthy fear of snakes when I came to Australia. Hearing negative stories about poisonous snakes over the years, I do now have a fear reaction when I see a snake. Unfortunately, children do not always learn helpful fears.

Small Children, Big Fears

Friends took their three-year-old daughter Amy to a playground. Some big boys were chasing each other around and they jumped onto the suspension bridge on which she was standing.

Amy was terrified when it started moving violently up and down. It was all over before her parents could take in what was happening. From that moment, she avoided anything that looked


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like the wooden slats of the bridge in the playground. Even the decking outside their back door, which was the only way out into the garden. It took weeks of coaxing her with picnics on rugs on the decking, then outings to the playground, and finally back onto the suspension bridge, to shift the perception of threat and no longer trigger the fear.

This is an example of a learned conditioned fear, where the wooden slats became associated in Amy’s mind with the feeling of terror. It is best to address this type of misperception quickly as my friends did. Conditioned fear is a cause of needle phobia and can be the start of a lifelong avoidance of healthcare. It is important to nip it in the bud by exposing children to the very thing that scares them, in small doses so they can cope with the right support.

Anything can become a trigger for conditioned fear in theory, if a child has a negative experience and makes the association. It may only take one bad experience and is not uncommon at medical procedures. I have known children to develop fear of people wearing name badges, or green scrubs, or stethoscopes around their neck. It may spill over to areas other than the medical context: a white towel on a table in the change room at the swimming pool, or the plastic key card hanging round the neck of a shop assistant.

How pain works

Have you ever wondered how pain works? For hundreds of years we thought that pain was a signal sent from an injury to the brain, with the amount of pain proportional to the size of the injury. People who cried a lot were called wimps and people who didn’t were brave. We talked about low and high pain

thresholds. A number of myths have grown up around pain and procedures in young children: they get used to it; they don’t feel it; they don’t remember it; if they are not crying they are not in pain; pain is character building. In the last 20 years all this has been turned on its head.

There are various modern definitions of pain. The most useful I have found is ‘All pain experiences are a normal response to what your brain thinks is a threat’ in David Butler and Lorimer Moseley’s book Explain Pain.

Nociception is a function of a special branch of the sensory nervous system that detects harmful stimuli and sends danger alarm signals to the brain. There are sensors (nociceptors) all over the body and the number is not fixed. The message about potential or actual damage is processed together with information about past experiences, emotional state and other sensory cues. If the brain decides there is a threat and you need to take action, pain can be produced in a fraction of a second. Have you ever had your hand withdraw from something burning hot even before you consciously registered the danger and felt the pain?

However pain is not a given. Think of a time when you noticed pain at bedtime and on inspection discovered a bruise or a cut from some activity you had been doing during the day but at the time, you weren’t aware of it. This can even happen after significant injury. When I lived in Papua New Guinea a mentally ill patient at the hospital where I worked ran amok with two carving knives. One of the doctors was stabbed multiple times before fighting off his attacker and running for his life. It was only once he reached safety that he was overwhelmed by pain. His brain decided there was something more important to


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attend to first – survival. The converse is also true. There can be significant pain following a minimal stimulus when the danger alarm system has created more sensors and the brain is being told there is more damage at the tissues than there actually is.

Pain Sensitivity

I met Tristan when he was eight years old. He had been very ill as a baby and had multiple medical and surgical procedures to diagnose and treat a disease called cystic fibrosis. He was having a blood test but as soon as the pathologist grabbed hold of his forearm, he started to cry out, ‘it hurts, it hurts’.

Not surprisingly, he wouldn’t carry on with the procedure. Another pathologist came and she took hold of his wrist more gently. ‘Oh, it doesn’t hurt,’ he said with relief. Taking hold of someone’s wrist, even a little roughly, would not normally send enough danger alarm signals to the brain to produce pain.

It’s hard to describe the effect it had on me. I had been a doctor for many years and had carried out hundreds of procedures. I thought children like that were probably making it up, being manipulative. This was the cultural belief of the times. But the older, wiser me knew Tristan was experiencing pain. How many children, I wondered, have suffered because we did not understand the need to help them with procedures, especially in the early years? As a fellow teenager with cystic fibrosis told Tristan, ‘Everything they do to me hurts me’.

Young children have to develop a reliable sensory system. The way to help them do this is to reduce the expectation and experience of pain when it is not helpful and respond appropriately when your child is in pain, not ignoring it or over-

reacting. By the time children are three years old, their parents are able to predict how they will respond to a potentially painful stimulus. What is not known is how much of this is nature and how much is nurture.

A Mother’s Influence

When he had his first immunisation we didn’t know any techniques or that, as a parent, I could influence the pain management of my child. We went in, I was feeling upset and I was holding him very tight as he was given the injection. He screamed and I started crying. At his next immunisation, when I was relaxed, he cried a tiny bit when the injection just hit the skin, but he reacted so differently. He was so calm and straight away he laughed after it, which made a big difference to us.

Debbie, mother of Bailey

Parents in my workshops were fascinated to discover for themselves that how they reacted and responded made a difference to how their children experienced procedures, including how much pain they exhibited. This is called ‘social learning’.

The body and sense of self

Infants and young children need correct physical handling and guidance to develop a positive, healthy, respectful attitude towards their body. It is a crucial step in the development of self and individual identity. Medical procedures can potentially get in the way of this.


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Young children do not have a clear sense of boundaries. Although they look like separate little beings, they are not yet aware of where they begin and end. They are primarily emotional and sensory beings, learning about a more separate sense of self and who they are in the world. Families ideally provide a ‘second skin’ in the early years while children learn to protect themselves emotionally, psychologically and energetically. They need respectful listening in order to grow up trusting their own deeper knowing and instincts.

In the following excerpt Hannah, who is about to turn three years old, has been admitted to hospital with a renal tumour.

Stop!Hannah opened her eyes and sat up.

‘Mommy, who are all these people?’ she asked, frowning.

One of the residents spoke. ‘We need to examine her,’ he said efficiently. ‘It’ll only take a minute.’

‘My name is Hannah,’ Hannah said quietly.

Yes, of course,’ he answered. He stepped closer, reaching for his stethescope. As he did, the two residents next to him moved in, and then those in the hall entered and formed a semicircle around the bed.

‘Stop!’ Hannah yelled holding out her arm like a policeman in traffic. The resident with the stethoscope froze. Hannah turned to me, ‘Mummy, please ask these people to leave. They aren’t my friends; they didn’t even tell me their names!’

I paused. The residents were looking at me. I knew they were counting on me to tell Hannah to be a good little girl and let them do what they needed to do. ... if any person in this world deserved respect, it was Hannah. I looked at the guy with the stethoscope.

‘She’s right,’ I told him.

From Hannah’s Gift by Maria Housden

We all develop an intimate zone. It has been demonstrated in children as young as four years old. In adults, it is about 45 cm and whenever anyone enters that space, it can feel like an intrusion, especially when they have not been invited in. One way to help children cope is to give them breaks. Think what it is like when you’re carrying a heavy suitcase or shopping bag. Sometimes the only thing to do is stop, put it down, and change arms. It’s like that for children having procedures and if you think of their short lives and how long even five minutes is as a proportion of that, it can seem like forever.


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Be sensitive to your child’s cues when it comes to undressing and exposing different parts of the body.

Reducing the Invasion

Julie was five years old when her world was turned upside down by the diagnosis of a brain tumour. Hospitalisation, imaging of her brain and bones, blood tests, a visit to the radiotherapy unit, harvesting of stem cells and so on all in a whirlwind few days left both Julie and her mother feeling frightened and helpless. It would take small steps over some time to regain their trust. I wanted to show them how Julie could lie still all by herself for the six weeks of daily radiotherapy treatment instead of needing to have a general anaesthetic every time. She did not want to take off her nightie, so we cut a hole in it.

Handling children roughly or holding them down forcefully while a procedure is carried out is potentially damaging to the developing brain. With the ever-increasing number of procedures being carried out, the practice has become widespread and accepted in medical culture. From a child’s point of view, this is no different to other forms of coercive force. There is no justification for it in medicine, any more than in other institutions, where it has been banned. The chapter on Holding Your Child offers less threatening alternatives.

At a glance

It is important to understand your child’s normal developmental fears so that they are not activated at a medical procedure.

Children learn new fears quickly. The fears may be of neutral stimuli that they have subconsciously associated with an unpleasant experience.

Pain is not a given. However early, untreated painful experiences are wired into the nervous system and change a child’s sensitivity to alarm signals.

Respect for your child’s body at all times is integral to healthy development of the sense of self.

CHAPTER 4The Challenge to Adults


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Chapter 4 - The Challenge to Adults

CHAPTER 4

The Challenge to Adults

‘The behaviour of all adults at medical procedures is too important to ignore.’

Ron Blount, Psychologist and pain researcher

Listening to Ron Blount talk at the International Symposium on Paediatric Pain in Sydney about the research he had been involved in during his long career, I was convinced we could do more to help children. As doctors, our focus has often been on drugs and ‘getting the procedure over with’, while psychologists have an interest in reducing a child’s suffering through other means. The problem is that doctors are the ones ordering and carrying out the tests and treatment and psychologists are involved with the emotional wellbeing of the young patient, usually after a diagnosis or procedure has caused distress. There is agreement that young children need support, yet information is not getting through in a collaborative way.

In the short term, the success of each individual procedure depends on what adults say and do. Adults can modify the sensory information and how it is taken in so that a child can cope with what’s happening, rather than becoming distressed. Allowing your child to avoid medical procedures out of fear is not a long-term solution and makes it harder in future. There is a place for delaying non-urgent medical care until children are old enough to understand what’s happening to them, but that is often not possible. It is not sensible to compromise a child’s

emotional health and trust in an effort to improve physical health, because in the long run this interferes with development and affects overall health. It also impacts on the health and function of the family if parents have to take a reluctant or distressed child for medical treatment.

In summary, a child's healthy development depends on our ability to reduce the perception of threat, so that young children feel safe and need not be concerned with fear or pain. This is adult business.

Three-way relationship

I find it helpful to think of a medical procedure as a mini social gathering. There are at least three people at most procedures being carried out on a young child – the person conducting it, the child and a person to hold the child still. A child is vulnerable and requires protection. The support person needs to hold the child for the technician so the procedure is carried out safely. Traditionally a nurse would hold a child for the doctor. Now, where possible, it is a calm parent or caregiver.

It is necessary to view the interactions that take place in the medical context as having significance, even though a medical procedure may only take a short time to conduct. We are concerned with very young children here, those who cannot speak up for themselves and who will be influenced by the actions of the adults in the room. While the technician may have the child’s best interest at heart, their focus must nevertheless be on the procedure itself. Therefore, a dedicated person is required to make sure that everyone works with the child’s developmental needs and not against them. This is a child’s right. Children want to know that the adults in their life are in charge and protecting them. It makes them feel safe.


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Emotional support for families

There is growing awareness that the level of emotional support for children at procedures needs to increase. Current methods are to train more healthcare professionals in behavioural support as well as the technical aspects of medical procedures and, in particular, to fund more play specialist positions. Play specialists are healthcare professionals who specialise in child development and work with children to normalise the hospital environment as much as possible, reduce anxiety, promote self-esteem and provide education and support around specific procedures. They are also known as educational play therapists and child life specialists, depending on when and where they are trained. See Appendix for more information. They have a very important role, but there are limited positions, which means big gaps in the service they can provide. In my view, they will never replace what parents can do to support their young

children, and their greatest impact might be through educating groups of parents in hospitals and the community.

Parents sometimes say things like, ‘Why don’t doctors and nurses tell us about this stuff?’ Or ‘I wasn’t looking for a book to read. I didn’t know I needed one’ or, ‘surely doctors and nurses are already helping children cope with the fear and pain’. Why do I think this is too important to leave just to the healthcare professionals?

Firstly, they can’t support your child as well as you can and secondly, it takes a long time for information to get to the right place and for knowledge to be put into action. There is no guarantee that even the best evidence will become common practice. We’ve known for 150 years that handwashing prevents the spread of infection but surveys show that fewer than 50% of doctors routinely wash their hands between patients. In one hospital, parents have recently been advised that a change in policy gives them permission to ask healthcare professionals if they have washed their hands.

Doctors are human and there is no longer any place for treating them as if they are not.

‘How do you get doctors off their pedestal? You get patients up off their knees.’

Anon

We can all get stuck in our habits, or fail to see the consequences of how we behave. Maybe we simply don’t believe the evidence. Changing beliefs can be hard.


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Changing beliefs

Beliefs are based on what we think we know to be true. More often than not, they are interpretations based on insufficient information, made up of thoughts, assumptions, values and opinions, which come from our families, society and popular culture. Some beliefs change over time, but many stay with us, whether or not they are accurate, and are hard to change. When it comes to medical procedures, our beliefs have become equally entrenched over time.

A better way

‘Having been trained in a time when we held children down, I admit that it was somewhat difficult to accept there was a better way, but clearly, there is.’

These are the words of Dr Chris Barnes, consultant haematologist. He says there were two things that convinced him we can do better. The first was discovering that children in his care, who had developed needle phobia, could overcome it with the right treatment. The second was that children, whose parents were shown a new way of managing medical procedures, did not develop fear of medical treatment growing up. ‘This makes my job easier,’ he said. ‘Why isn’t it happening everywhere?’

I was fortunate to run procedural pain management workshops with the families looked after by Dr Chris Barnes and his team. Families attended once a fortnight with their children for 90 minutes, for an average of five sessions. The time was structured in three 30-minute blocks. Parents would tell their stories and recount their experiences at procedures; what worked, what didn’t work. Then Beth, the music therapist, would play her guitar and sing, encouraging parents to join in and interact with their children with the various musical props. The last half hour was a more formal teaching session, to ensure that all material was covered, even if parents didn’t have a chance to put everything into practice between workshops.

When parents are given credible information and the confidence to use it, the results can be transformational.

We all see the world clearly through our own glasses. The problem is we don’t realise we have glasses on, so we hardly ever stop to examine our beliefs or change our perception until something happens to change our view.

The life of Sophie Delezio and her family changed dramatically the day a car crashed into her day care centre and burst into flames. Sophie spent the next six months in hospital and her family have started a charity called Day of Difference (www.dayofdifference.org.au). They are funding a research project looking at the best way to support families in hospital. It says on the website, ‘The mistake is thinking that doctors and nurses can do and know about everything’. It does seem extraordinary that we have come to expect so much of the medical profession. But times are changing. We are at a crossroads where modern neuroscience is meeting antiquated belief systems. On an individual level we can use our gut feelings, instincts and intuition − call it what you will − to challenge those belief systems and say, ‘Something is not right here, there must be a better way’.


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What a Relief

After Sarah attended a workshop about medical procedures with her 18-month-old daughter Madeleine, she told me:

What you said made sense. I straight away had lunch with my husband and told him what I’d learned. It’s going to give me more confidence in dealing with hospital staff, and make me more assertive. It’s good to know it is okay to ask for those things like holding her, particularly because the previous times, she’d been wrapped up in blankets and held down by about four people, to actually be confident and say I’d like to have her in my lap or something like that. It is a whole new way to approach the situation, ‘Calm, everybody calm – it’s going to be fine’. That was a change from previously. That was a relief.

Leadership

Research studies show that if one person at a medical procedure knows what to do to support a child, others will follow their lead. This can be a parent following the lead of a nurse or play specialist, or a nurse following the lead of a parent, for example. It works best if only one person does the talking. Just as in any microcosm of society, it helps to be flexible. It is good to have the choice, to be comfortable taking the lead if necessary and step in, and also step back and be a follower where appropriate. You can have too many cooks or there can be no one interacting with your child. Not all healthcare professionals feel confident interacting with young children.

If you are taking a back seat, let it be because the person conducting the procedure has the full attention of your child and is able to do the job, and not because you have handed over your authority as a parent. Your child will know you respect and trust this particular person doing the procedure and so can they.

Whatever your role is, continue to monitor what is happening with your child, and be prepared to change tack.

Taking No Chances

Victor’s four-year-old daughter Melissa was having the plaster cast removed from a broken arm that had healed. He could see her looking more and more worried as the metal blade cut further in. The machine is alarming even to adults who are not familiar with it, because it looks like a circular saw. In reality, it is vibrating and there is a guard. It would also probably feel like a tickle if it did touch the skin, however Victor and Melissa did not know this. No one had explained and they hadn’t asked.


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He called a cheery halt, saying thanks very much and that they would finish off the job at home.

In retrospect, Victor said he would have asked the technician to show them the equipment and explain how it worked because he had no idea, but in the heat of the moment, all he thought about was calming his daughter down.

Progress is coming

What if there is a difference between your belief system and that of the healthcare professionals? This is bound to occur as we all have different priorities, and you may need to speak up for what you want for your child. I understand that taking the initiative in the medical setting may be a big leap for some of you, let alone negotiating.

You are the trailblazers – think of the early days of the motor car and be encouraged by this saying attributed to Henry Ford: ‘If I had asked my customers what they wanted, they would have said a faster horse’. See Chapter 14 for inspiring stories from parents, who knew they could ask for something different and learned to give their child a more comfortable ride.

At a glance

The behaviour of all adults at procedures can make a difference to whether a child copes or becomes distressed. Parents and technicians need to work together for the best results.

Changing beliefs can be hard. One hospital department was transformed by educating parents of very young children to cope with medical procedures, hence making the consultant’s job easier.

Take a back seat where necessary but always maintain your authority as a parent. It works best if there is only one person who does the talking.

As informed parents, you can take the lead at procedures and prevent the occurrence or escalation of distress in your children.

CHAPTER 5Getting on the Team


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Chapter 5 - Getting on the Team

CHAPTER 5

Getting on the Team

It is my heartfelt belief that parents are an underutilised resource in healthcare.

A parent’s role in hospitals and healthcare is still defined by the professionals and does not always put enough emphasis on a child’s emotional sense of safety, especially in this young age group. That is where you come in. Parents have had very little access to information explaining what to do and how they can be involved. Most parenting books don’t cover the topic, even ones written by healthcare professionals. Medical procedures present their own particular parenting challenges.

Protecting your child

Probably the most challenging belief held by parents is that pain and distress are inevitable at medical procedures. If the only way parents can protect their children’s health is to give permission for them to be subjected to a procedure that will hurt, it conflicts with their wish to protect their children from harm and unnecessary suffering. Parents often tell me they don’t know what to do or say in this circumstance, other than believe the doctor or nurse. Unfortunately, healthcare professionals are part of the culture that has promoted this belief.

If parents continue to be unaware of alternative ways of handling medical situations with their young children then the culture of pain and distress will continue. When made aware

of possibilities, most parents are ready and willing to apply themselves to new strategies and behave differently in a medical setting, being proactive at their child's procedures.

This may help dispel the deeply held belief that pain and anxiety are inevitable.

'Something I Could Do'

Rebecca was one such parent who had a deeply set belief and a baby who was a few months old.

I was not interested in attending the workshops when I first received the flyer. I felt it was something to think about down the track, when Tom was in lots of pain from treatment and nothing to think about now. However, I decided it might be worth continuing to build relationships with other families so I decided to attend. I am so grateful I did as I quickly began to feel empowered: I could do something to make Tom’s experiences more positive and perhaps less frightening. This was a revelation to me and I quickly shifted my whole focus into being proactive.

The most significant thing I have learned is that, as a mother, I can assist my child during a painful procedure and not just be a helpless bystander. As my son gets older, I have a whole series of options to explore to see what works for him to ease his discomfort. I have also realised that I need to gain control of my emotional responses and anxiety in order to most effectively help Tom. I know there are many hurdles left to overcome but now I have some practical knowledge as well as faith in my ability to be the mother I want and need to be for Tom.


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It would be abnormal not to feel sad and scared and a whole host of other complex feelings and emotions if your baby was diagnosed with a serious medical condition like Rebecca’s son. Regardless of his diagnosis, as soon as she knew there was something she could do to diminish his suffering, she incorporated it into her parenting. By the time Tom was 18 months old, she and her husband were having more trouble washing his hair than giving him his intravenous treatment three times a week!

Creating a child-friendly environment

There is no tradition yet of keeping the atmosphere light and child-friendly at medical procedures although things are changing slowly with the availability of play specialists, music therapists, appealing and interactive toys, and modern technology such as smartphones and apps.

Creating an environment where children feel safe enough to play requires a major culture shift.

‘Looking after a child with a chronic or life-threatening illness requires a comprehensive "total" approach to

care, a healing environment that includes entertainment, diversion, fun, laughter and joy.’

Professor Les White, Executive Director, Sydney Children’s Hospital

The history of parents and healthcare

A long history of parents being excluded from the care of their children in the medical setting has been played down, even overlooked as an important influence on how we do things today. For decades, it was considered acceptable, even preferable, to admit a child to hospital into the sole care of the nurses and doctors. We can look at some extreme examples of mother and child separations in different areas of society, such as the stolen generation of Indigenous Australians, or the forced adoption of babies of single mothers. These decisions left their mark on an entire culture and have become a legacy that will be borne out in generations to come. To a lesser degree but still salient, when children were admitted to hospital, their care and wellbeing was left entirely to the staff, and the trauma of separation from their parents has had a trickle-down effect in our culture.

In the past, medical treatment was almost totally hospital based and children of all ages would stay on the ward for weeks at a time without their parents. Before 1948, visiting hours were twice per month on Sundays for two hours and that was only after a child had been admitted for four weeks. In 1952, it was increased to twice a week and finally the hours were extended in 1963. As the Royal Children’s Hospital archives in Melbourne reveal, ‘The importance of parents and the shifting of responsibility to them took a long time to be officially accepted in both the UK and Australia’.

As a medical student, I vividly remember learning about an acquired condition related to these practices. Babies and young children would scream and cry in protest when first left alone in hospital and then they would give up and stop crying until parents


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came to visit, when they would get visibly distressed all over again. This was one of the reasons for the restricted visiting, because it ‘upset the patients’. Eventually the infants would stop crying and protesting completely and become apathetic. The condition was known as hospitalism and it could be fatal.

I once heard the Dalai Lama say that it is a mother’s affection for her child that makes us human, and I think we have to be mindful all the time of the dehumanising potential for modern medicine and the ability to fracture the mother-child bond.

Research conducted in the 1960s showed the harmful effects of separating young children in hospital from their mothers. This research, together with the UN Convention on the Rights of the Child 1969, and the lobbying by a grassroots movement called Association for the Welfare of Children in Hospital, contributed to the changing hospital culture in Australia.

Hospitals opened their doors to parents, yet they were still not ‘allowed’ in treatment rooms where the medical procedures took place. Over the next few decades, some parents started to accompany their children to procedures. Today, thankfully, there are very few areas that are out of bounds to parents. Just the operating theatres and areas where there is active radiation.

An extension of your parenting role

In reality, there is still a lot of confusion about what parents should do. I believe that can all change when parents have the knowledge, skills and confidence to support their children during medical procedures. Then the healthcare team will wonder how they ever managed without parental involvement and support.

There is still a way to go. Healthcare professionals don’t pressure you when you feel ambivalent about accompanying your child to a procedure, which is good. They may not support and encourage you either, especially if you do not have an ongoing relationship with the healthcare team in question. If you are nervous, your child will pick up any anxious vibes – they are very contagious. The problem is there is a tendency to blame parents and children for any upset, without looking at the bigger picture and the contribution of the behaviour of other adults and the environment. This is where it can get tricky, without calm and empathic understanding from everyone present.

I hope this is an area where we see great change over the next decade − an awareness of how to stop in the face of upset or despair and make space for a heartfelt connection between parents, children and healthcare professionals, which changes everything. This is likely to happen as health services accept their responsibility to create the space for these conversations, and parents become confident in their new supporting role, and are able to voice their wishes and concerns.


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Changing the scope of your job description

Thinking of yourselves as consumers of healthcare as well as parents could make it that much easier to clarify your needs and expectations and communicate your concerns when those high standards are not being met. The health industry is increasingly aware these shifts need to happen. Consumer participation is now included in the National Safety and Quality in Healthcare Standards, with patients, parents and other patient advocates taking their places on boards and committees. I was recently reading a newspaper article about women’s health in which a specialist doctor was quoted as saying, ‘Patients are no longer prepared to be fobbed off and so we have had to raise our game’. This is encouraging news for parents with a mission.

The sooner everyone realises it’s a joint effort the better. Medicine has become far too complicated for anything but a team effort. Healthcare professionals need your help even if they don’t know

it. Your children need your guidance even if you are not yet sure what to do. Of course, it’s not possible to map out the steps at every procedure here, but it helps to recognise that everyone has a job to do. You and the healthcare professionals are authorities on different subjects. Having a collaborative rather than a competitive approach will begin to break down the old ways and old beliefs that no longer serve anybody however tempting it is to ‘get a procedure over with’. There is only true harmony when everyone’s needs are met − without coercion, without humiliation, without underdogs.

At a glance

A parent’s role in healthcare is still defined by the professionals. Informed parents are motivated to make changes to support their children immediately.

It is important to create a child−friendly environment – one where your child feels safe enough to play.

Historically parents have been excluded from the care of their children in the healthcare system and have routinely been blamed for their child’s distress.

Get yourself on the team. You may have to persevere to be accepted.

You are consumers as well as parents. Raise your expectations and demand a better service.

CHAPTER 6Preparing for Procedures


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Chapter 6 - Preparing for Procedures

CHAPTER 6

Preparing for Procedures

‘To feel safe in a defined environment and to turn off our adaptive defence systems is the goal of civilisation.’

Stephen W. Porges, Neurophysiologist

Every procedure has three distinct phases: before, during and after. In this chapter you will discover what to do before the procedure – from when it is planned, until just before it is about to happen. If you have a particular procedure in mind, it’s time to download a copy of the Comfort Action Plan from my website www.EverybodyStayCalm.com and start to fill it in.

There are additional resources for parents of a child with disabilities. Two parents have shared stories of their experiences on page 169. If your child is on the autism spectrum, you may want to check out the article for parents on the Autism Speaks website, called Taking the Work Out of Blood Work. Go to www.autismspeaks.org homepage and double click on Tool Kits, then search for blood draw tool kits.

Watching others

Take your child to see you have a procedure or a dental exam, or a check-up at the doctor, provided you are able to model a relaxed matter-of-fact approach. Having younger children watching older children can also be helpful with the same

proviso − you want to create positive expectations, not put them off!

Get the basic facts

The more information you have about what to expect, the better prepared you will be. Ask the why, what, who, when, where questions and don’t worry if they sound unimportant. If your child is admitted to hospital, then it is easy to find yourself being swept along, feeling as if there is no time to ask questions, or that things are already underway without you being a part of them. It may take courage, but ask about all the things that are on your mind in relation to your child’s care. Find out who you need to ask and get the ball rolling.

What is the name of the procedure and what is involved?

With the right information, you will be able to plan ahead. While no two procedures are the same, the basic steps are. The idea is to adapt the information from this book to suit your particular situation. These days it is worth checking reliable websites for information about your particular procedure and location. Do not make assumptions. Always check what is going to happen – you may find out that you and the technician are not on the same page. One story I heard was of a three-year-old child given a facial mask to have an anaesthetic, when she and her parents had been expecting a needle. She felt comfortable with needles but a facial mask was alien to her. Inadequate preparation led to a distressing experience for everyone.


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Why does my child need this procedure?

While this book is not about whether your child should have a particular procedure, you do need to be clear about this question beforehand, so that you can set aside any concerns and be present for your child during it. Gather any information you require to feel confident about going ahead. Discuss anything that needs clarification with the healthcare professionals who order and carry out the tests and treatment. Arrange to have these conversations away from your child whenever you can. Remember, 'little pitchers have big ears'. Find out what will be expected of you and your child, so you know how to prepare.

Who will do it and where will it take place?

Depending on what the procedure is, you may have a choice about where it happens and you may want to review your options. For example, immunisations may be given at council venues, at your local doctor, or special clinics in hospitals. Your child may be having a procedure carried out by a particular doctor or technician, in which case you will need to go wherever they tell you.

When will it take place?

Other than emergencies, this may be something you arrange or an appointment may be sent to you. You do need to be prepared for delays and possible rescheduling because both of these are common in the medical system. Make sure your child is rested and well fed if he is allowed to eat and drink.

Who is the best person to accompany my child?

This is something you need to discuss as parents. Usually it is whoever your child feels the most comfortable and secure with in a challenging situation. If you have an aversion to hospitals or medical procedures or needle phobia then choose the next best person. You may surprise yourself and find hidden strength to support your child even though you didn’t think you could.

You and your partner may both want to be there to support each other as well as your child, especially if you are new parents, or dealing with a difficult diagnosis. Be prepared to negotiate with the medical team. It does happen that parents are told only one of them can come in the treatment room with the child, and sometimes none, depending on the procedure. This may be hospital policy, or due to lack of space, or simply that the technician is anxious about having parents in the room.


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Older siblings can be a big help, by adding to the overall positive experience. Of course, if you think they may be a negative influence and there is somewhere else they can be, don’t bring them along.

Family Faces

Emily was born with a rare skin condition. She had a hairy mole covering large areas of her body. She had many operations to remove it piece by piece during the first few years of her life, and afterwards there were frequent dressing changes. Sometimes the bandages were stuck down and it could be slow.

We found that the contact of family members and familiar faces played a big role in helping Emily get through the procedures. During bandage changes Emily would be distracted by her older sister singing or playing games with her.

Emily's mother, Gabriella

What should I tell my child?

There are some rules of thumb depending on your child’s age and developmental stage. Until children are about one year old you don’t need to say anything about an upcoming procedure – you only need to prepare yourself. One- and two-year-olds need simple plain language explanations such as ‘you’re having an injection’ or ‘you’re having a heart test’ just before the procedure.

Preschool-aged children may benefit from being told a day or two in advance where they are going, seeing actual photos, reading a picture book about going to hospital or the dentist, or playing with a doctor’s kit. Beware of giving young children too

much information as they have very active imaginations. They only need to know what they will actually experience – bodily sensations and what they will have to do. You may talk about the numbing cream if you decide to use that; sitting still; the cool of the alcohol swab to clean the skin; or the tight tourniquet. You may decide to talk about what you and your child will do while the blood is taken, or about pressing the vein with a cotton wool ball afterwards, and finally the bandaid. There, it’s all finished.

If you like storytelling, one non-threatening way to deliver this information is through a story that you make up about a little boy or girl, just like your son or daughter, who needs the same procedure. Make the child in the story similar enough for your child to identify with him or her, but with enough difference to create a safe distance, by giving the child a different name. Use the facts about the procedure to tell the beginning and middle and make up a realistic and happy ending.

Should I tell my child something is going to hurt?

This is a question parents wonder about and they are likely to get different answers depending on who they ask. Many healthcare professionals believe it is honest to tell a patient that something is going to hurt. Research is showing that this is not the case. If a technician says

'sting' before inserting a needle, a patient is more likely to experience anxiety and pain than if a stinging sensation is not suggested.


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I would never tell a child that something won’t hurt, because it might. On the other hand, it is not honest to say something will hurt, because it might not. With the right support, your child simply may not experience a procedure as painful. There is also the possibility that a procedure will hurt, and yet your child will not to be bothered by it. This is a useful concept when it comes to managing all sorts of painful experiences. Explain what you are doing together, to help him feel comfortable, and tell him, ‘so you don’t need to be bothered by the procedure’. For example, you can read a story and he can go somewhere else in his imagination, while the lady does the blood test. Have fun filling in the plan together.

What if my child asks if it will hurt?

It is important to be honest, yet without predicting pain. I say ‘I don’t know. Some children tell me it does but most children are surprised that it’s a lot easier than they thought it would be’, and then make some suggestions about what he and you can do to make him comfortable. You will find examples in the following chapters.

Medical play

Young children love to play and move effortlessly between fantasy and reality. It’s worth investing in a toy medical kit and you may decide to add some real equipment along the way if you find that procedures are going to be a constant in your child’s life. Pretending to carry out a forthcoming procedure on a soft toy (let your child choose which one) will give him a chance to handle the equipment without feeling threatened and

everything can happen smoothly. For example, for a two- or three-year-old, 'Teddy’s getting some medicine. You’re going to get some medicine, to make your blood strong'. When it’s your child’s turn for real, even though it is a new situation, there will be something familiar, especially if you repeat the phrases and refer to what happened during the playtime. 'Remember how we put a bandaid on teddy, and then it was finished? Here’s your bandaid.’

If your child is having a series of procedures, give him a chance to play with his medical kit, without you dominating the play. Child life specialist Shani Thornton describes how.

Playing Doctor

Just playing doctor and having children explore the materials can provide a sense of control for them. It is a great way for a child to play out what they have experienced.

As both a child life specialist and a parent, I like to have the child lead the play. I am involved with them but I let them provide the information on what is happening, how to play and what roles we have. This is an eye-opening opportunity for a parent to connect with their child and understand how they may be processing their experience from a doctor’s appointment. It may provide insight and information on misconceptions as well. If your child is saying that the baby doll is a bad girl as she is giving her injections, than you may want to investigate that a little more. Some kids feel like they did or


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said something wrong and that is why they are experiencing an illness, injury and treatment.

Don’t freak out when your kid stabs their doll in the eyeballs a dozen times with the syringe. It’s normal. Children play out and over-exaggerate experiences all the time. When my son plays doctor he gives his patients ‘shots’ (injections) everywhere on their body. On their head, their arms, tummy, mouth, everywhere. I never correct him and I let him just play. His stuffed animals are covered in bandaids and he is left with a sense of control.

www.childlifemommy.com

See Appendix for information on play specialists/child life specialists. Some hospitals offer one-on-one sessions with a play specialist before certain procedures and admission for surgery.

What to put in a toy medical kit

Start with a commercial kit

Add bits and pieces as needed:

Real syringes (without needles)

Tourniquet

Flexible tube/catheter

Real nurse’s stethoscope

Anaesthetic mask

Bandages

Gauze

Alcohol swabs

Bandaids (preferably character ones)

Cotton wool balls

Doll or soft toy


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Checklist

What to take with you:

whatever you normally take when you leave the house PLUS

- your Comfort Action Plan (downloaded from the website)

- request slip and directions

- grab bag (see page 119)

- any medications

- medical insurance information

- whatever else you think will be useful.

In case of emergency

Sometimes the unthinkable happens and there is no time to prepare for a trip to Emergency. I met Karen just after her son had lost the top of his finger in an accident. She wished she had had some information about what to do so that she could protect him from unnecessary stress and handle the situation better herself.

Here are some tips:

Consider in advance how you would handle a hypothetical emergency – where is the nearest Emergency Department, who do you need to contact, and who can help with the other children? This reduces some of the angst.

The fewer surprises the better

If your child has a condition that means you are certain to go to Emergency for a procedure one day, arrange to go beforehand and have a look around.

Expectations and reality were very different in Emergency. There were lots of people – two nurses and a doctor – and noise! There was a long wait, and the treatment room was very clinical.

Rebecca, mother of Tom

The nature of an emergency can make everyone anxious. It may be one of the hardest situations in which to stay calm but it is the key to helping your child cope.

Consider everyday hurts and scheduled procedures as good practice for emergencies. Convey your faith in your child’s ability to cope. Sound confident and in control yourself.

Helpful language

Talk to your child calmly and tell her what’s happening. For example, 'It’s a cut. Let’s wrap it up and keep it comfortable. We’ll go to hospital. The doctors can help your body fix it quickly'. Acknowledge any pain, using his words ‘Yes, it’s ouchie’ or ‘It Hurts’ and then reassure him that there are ways to help him feel better and that his body has already started to heal, because it knows how to. Continue to use language of comfort and healing.


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Become familiar with the strategies in the following chapters – you may already know what will work best for him – so that he knows he is able to help himself feel better too, as age and development permit. The doctors also have medicine that can help.

On arrival at the Emergency Department, you usually see a clerk and then the triage nurse will assess the urgency of the situation. Your child will be seen in order of priority, not arrival time. You will be told whether your child can eat and drink. If his condition changes while you are waiting, do seek help and request a reassessment.

It is likely your child will have procedures in Emergency. Be prepared to reframe what the Emergency staff say, if it sounds confusing or frightening. For example, if the doctor uses the word ‘pain killers’ you can say ‘the doctors will give you medicine to help you feel better, while everything settles down’. If there is talk of ‘reducing a fracture’ then you can explain that ‘the doctor will click the bones back into the right place, so you can get back to riding your bike’ or whatever activity he likes doing. You may need to interpret your child’s behaviour for the staff – fear and pain are both stressful for children and need to be taken seriously.

Most Emergency staff welcome parents in the treatment room. You may, however, be asked to leave for a particular procedure.

Rarely, parents feel dizzy or faint. If this occurs, then sit down immediately.

QUICK RECOVERY TIP: This type of fainting is the result of your blood vessels dilating, caused by an evolutionary survival instinct. Your blood pressure drops, so your brain is not receiving enough oxygen. Tense the muscles in your buttocks and lower limbs to prevent blood pooling there. Lie down if you need to, so blood can reach your brain, allowing you to recover quickly.

At a glanceThere are three distinct phases of a procedure:

before, during and after. Gather as much information as you need before, to know what to expect and feel confident.

Give your child an outline of the procedure, at an appropriate developmental level. Beware of giving too much information to two-, three- and four-year-olds who have very active imaginations and limited thinking skills.

Do not predict pain. Leave open the possibility that he might not be bothered by the procedure and plan some coping strategies.

Playing with a toy medical kit is a good way to familiarise your child with medical equipment, give him a sense of control and explore any misconceptions.

The nature of an emergency is anxiety provoking for all, but it is important you stay calm and confident for your child. Use words that promote comfort and healing.

CHAPTER 7Your Emotions


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Chapter 7 - Your Emotions

CHAPTER 7

Your Emotions

‘When parents learn that their behaviour and emotions impact on how their child experiences the procedure, we have a very

powerful tool.’

Janine Furmedge, Senior nurse

Let’s go back and look at Rebecca’s story again in Chapter 5, who was first reluctant about attending workshops, but who later realised she ‘needed to gain control of her emotional responses and anxieties’ and shifted her ‘whole focus into being proactive’. What Rebecca learned was that she had a choice about how she responded. It was not about controlling her emotions in the sense of trying to ignore them. It was about letting them be there and using them as a guide. The truth is that we don’t have a lot of control over our thoughts and feelings arising but it is up to us to decide if they are helpful or not, and what actions we take. That is what made the difference to Rebecca and her family.

This is what all parents can bring to medical procedures: a steady calm, clarity of judgement and presence of mind regardless of what is happening. Of course, it works best when everyone involved brings the same qualities but it is your attitude and intentions that set the tempo and baseline of calm for your child.

Calm is Catching

Emily’s treatment required surgery and frequent bandage changes, which could be slow because they were often stuck down. It became part of our everyday life and that is exactly how we treat her condition. We made a point to keep things as normal as possible as we also had to consider our other daughter. During any procedure, the most important thing was for us to remain calm, and not show negative emotion. We smiled a lot. If we were calm, Emily was calm.

Emily’s mother, Gabriella

Children see threats everywhere, well before a healthcare professional goes near them or does anything to them. They are wary in strange places with unfamiliar people and equipment. They soak up the emotional atmosphere like sponges and take their cues from you. Model the behaviour you want them to learn. You can use thinking and reasoning because you are an adult, but this is undeveloped in them.

Your child won’t think you don’t care about her because you’re not being sympathetic. On the contrary, it’s important to be aware of hidden messages in language of sympathy. We often say things like ‘It’s all right’ or ‘Don’t worry’ to comfort ourselves in a fear-provoking situation and children learn this very quickly, and immediately wonder what’s up – even babies. Research shows that these attempts to reassure a child actually increase distress.


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Being wrapped up emotionally in your child’s situation will prevent you from focusing on your child’s immediate needs in a calm, thoughtful way. Sometimes healthcare professionals may tell you ‘Don’t make a fuss’ or ‘Be neutral’, which sounds critical and unfeeling. You definitely want to maintain a heartfelt connection throughout the procedure, but without focusing on feelings, yours or your child’s. Children don’t like feeling worried or helpless and your composure is a gift to them. Here is how one family learned to make light of things.

Get the Guitar!

Sarah and her husband talked about what they could do differently next time their daughter needed medical treatment for a bleeding disorder. A few days later Sarah went into her daughter’s room in the morning and there was blood all over the pillow and sheets in the cot. In the past, she did not hide her concern and Madeleine would get upset while her mother held her and checked for the source of the bleeding. This time, before she did anything else, Sarah called out to her husband, ‘Get the guitar!’ He brought it into their daughter’s bedroom and started playing and singing songs at seven o’clock in the morning. Madeleine was overjoyed and Sarah had no trouble examining her and giving her the tablets. This became their routine when she had bleeds. Eventually the time came when she needed stronger, intravenous treatment in Emergency. The positive associations were entrenched. At the age of two she lay in her mother’s lap watching her blow bubbles, while the doctor put in the butterfly needle and injected the medicine. He was so impressed, he kept commenting on how calm they all were.

Some parents worry about being seen as the ‘bad guy’ who is responsible for their child’s suffering. I want to reassure you that your presence means more to your child than anything else does. Children want their parents at medical procedures. They want you there in the same way that we all like to have a trusted companion with us in certain situations. Even if things don’t go according to plan, you can still help your child recover, just as you would if she was upset in any other circumstance. You will be a source of strength for your child as you reconnect and focus on something positive together.

For some of you like Rebecca and Sarah, the knowledge will be enough to make a difference to how you relate to your emotions. For others it may seem rather daunting, if not impossible. Talk to the medical team. Find out what support is available. It may also be helpful to have some practical tips.

Ways to release tension

Listen to the free recording for self-calming. You can download it from the website www.EverybodyStayCalm.com

Breathing

Change your breathing pattern to shift how you feel. If you have been to relaxation or antenatal classes, or have a yoga practice, you will be familiar with this. Even if you weren’t convinced about the value of breathing during labour, please consider giving it another go at medical procedures.


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Here is an exercise to slow your breathing down. Breathe out for as long as you can then when you’re ready to inhale let the air fill your lungs, without overfilling them. Repeat that a few times then notice how you feel. Calmer? As though everything has slowed down? More present? If you felt dizzy or uncomfortable, then it’s possible your normal breathing rate is quite rapid and needs a few days to adjust.

Practise this for a few minutes several times a day. You do not need to lie down to do it. It will make it easier to do when you really need it, to provide calm amid the storm and focus on your child. Her breathing will be addressed in the following chapters.

More self-calming tips are:

Notice the chair under your buttocks or your feet on the ground for extra support.

Breathe in calm, breathe out tension.

Combine imagery with breathing – breathe in a colour that represents calm to you then as you breathe out send it to every cell in your body.

Scrunch up all the muscles in your body – face, shoulders and arms, trunks, buttocks, legs – as you breathe in, hold the tension for a few seconds, then breathe out. Notice how relaxation automatically follows tension.

Make space for any feelings, even if they are unwelcome. They will change.

Yours or theirs

It is crucial to distinguish between your emotional pain and your child’s.

It’s Okay to Pretend

I have a photo of myself holding our daughter, aged six months, when she first came out of cleft palate surgery. I’ve always liked it, but look at it rarely for some reason. I think it’s because it captures two things: it shows what Tilly had been through physically and reminds me of her pain, but it also captures me – faint smile, looking strong, firm and almost content – definitely coping. Inside I was just falling apart. Somehow I knew that if I identified too strongly with where she was at or felt sorry for her, I would be of no help to her. If I couldn’t cope with what she was going through, how could she?

Tilly’s mother, Gwen

Guilt Feelings Don’t Help

My daughter Eydie had a long-term fear of toilet training, which became a medical issue of severe constipation. One night, when the situation had become particularly bad and concerning I took her to Emergency. Given that Eydie had an extreme fear of anything to do with toileting all of the procedures were terrifying to her. I felt like the staff treated her as a child with bad behaviour or that she was naughty – even though that was never said directly. Our


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experience ended with Eydie being held down by a number of staff for an enema, screaming and in pain. We both left Emergency in tears. I felt powerless to help. Later, we were guided by a paediatrician in the process of creating a simple storybook explaining her condition in a fun and relaxed way, and what we all needed to do to help the problem. It worked brilliantly! I felt so guilty that I could have avoided the traumatising situation in Emergency by using such simple methods and that somehow I should have been able to know instinctively how to do this as a parent. Years later, I still have sudden pangs of guilt when I think of that night, but I think my way out of them. I know that it is not going to be helpful for any other similar situations I might encounter in the future.

Eydie’s mother, Jess

Taking the necessary action

Decide when, how and where you respond to your emotions:

Acknowledging them may be enough. If necessary, take some time out to process them, perhaps with support from a partner or friend.

If you’re feeling sad and helpless like Rebecca was, you may want to meet other parents in a similar situation.

If you are feeling frustrated or upset about something to do with your child’s healthcare, you may need to have a conversation with the relevant people.

If you want professional help for your blood or needle phobia, see Appendix.

Allow yourself time to do whatever nourishes you, brings you alive and helps you cope in difficult times – exercise, keeping a journal, a favourite pastime, a hot bath, nature. Children benefit from your replenished energy stores.


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At a glance

There is nothing wrong with emotions – they are a personal guide to your internal and external world. Listen to the message and then release them.

Your child won’t see you as a ‘bad guy’ when you are actively involved and engaged with her during a procedure.

Breathe in calm and confidence and breathe out tension.

Notice your feet on the ground and use your breath as an anchor during a procedure.

Take the necessary action to resolve your emotions regarding your child’s health, just don’t do it at a procedure.

CHAPTER 8Holding Your Child


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Chapter 8 - Holding Your Child

CHAPTER 8

Holding Your Child

‘People do what they know how to do and when they know better, they do better.’

Oprah Winfrey, Media personality The last chapter was about holding your child emotionally. This chapter is about holding your child physically in a way that will help them feel secure rather than trapped. This is critical to a young child because they experience the world through their bodily senses. The right sort of touch is vital for healthy brain growth and the release of calming hormones such as oxytocin. During a procedure, your calm, close physical contact will soothe and regulate their immature brain and bodily systems.

Young children are sensory and emotional beings and need a sense of you there to co-create that cocoon of comfort. Imagine yourself as a warm blanket or some other image of healing and protection. The warm human connection stimulates the brain-to-brain communication and the release of soothing chemicals in your child. Skin-to-skin contact and breastfeeding have an even more powerful effect.

‘An indelible memory is the sound of panicked screaming as a child is forced to lie flat on a treatment room table. This response escalates tension among everyone present. Reinforcements are requested for assistance to restrain the frantic child. Staff decides that parents must wait outside the treatment room.’

Positioning for Comfort Handout

This ‘Let’s just get it over with’ approach described above was the impetus for a radical program created at the Rainbow Babies’ and Children’s Hospital in Cleveland, Ohio in the 1980s. Child life specialist Mary Barkey and clinical nurse specialist Barbara Stephens developed a program they called Positioning for Comfort, which acknowledged the needs of everyone at a medical procedure − the child, the parents and the healthcare professionals.

What was so radical about it? It gave parents a role during a procedure. It worked with child development instead of against it, in particular a child’s urge to sit up. They recognised that forcing a child who wanted to sit up, to lie down for a procedure increased stress and struggle. They developed a program where children could be upright and held securely but not forcefully by a parent or carer.

It was a welcome alternative to strapping children to a board, or wrapping them in a sheet and holding them down. They noticed


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that as children became more comfortable during the procedures the healthcare professionals were also more relaxed, interactive and supportive. The parent role of supporting and comforting the child became integrated within the team. Making room for parents to be there in a nurturing, loving way meant the child had no reason to stop trusting his parents, and the bond was maintained.

Comfort positions

Variations on the positions are possible and they need to be adapted to suit a particular procedure.

If your child is less than six months and/or not sitting up, hold him in your arms. Once your child can sit up, attempt to have the procedure carried out in an upright position or at least so that your child is not resisting and has a sense of control.

You can:have your child on your lap leaning against you (see illustration)lie alongside himrest your hand somewhere on his bodyhold an arm or a legsupport him from behind.

When children are sick or frightened their behaviour often regresses and you may find yourself cuddling an older child as if he were a baby. The important thing is to work with your child’s developmental level in that moment, at that procedure. No one can tell you how much physical comfort your child needs. Respond to your child’s cues. Parents of children who have recurrent procedures have the potential to develop expertise

quickly and know just what is needed to reassure them and maintain trust. It is a balance between physically supporting your child and conveying your faith in his ability to cope.

What part of the body the technician needs to access will determine the position you end up in, because that area will need to be kept still for safety reasons and the success of the procedure. It is easier for your child to ‘forget about’ a part of the body that is peripheral like a hand or a foot than his face, for example. Combine different strategies, such as directing your child’s attention to a positive focus.

Child sitting on lap in hugging hold

Careful How You Hold Me

Bailey was distressed because his mother held him too tight for an immunisation. At subsequent procedures, he relaxed when she calmed down and stopped clinging to him.


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Will had his first intravenous treatment at 12 months of age. It was the middle of the night and everyone in the family was exhausted, so his mother lay down next to him to comfort him. A week later when he came to hospital for an injection, she noticed he was happy and relaxed and her instincts had been right.

Ellie was held down by many different people, including her parents, for multiple invasive procedures as a young child, and later said ‘I thought my parents wanted the doctors to hurt me’.

When a hug becomes restraint

Parents hold down children every day, particularly squirming toddlers. They put them in highchairs, change their nappies, strap them in car seats and grab them as they run towards a busy road − and that’s usually the end of it. Children automatically relax again when their attention turns to something more interesting.

In order for you to be of positive assistance at a medical procedure, your child’s nervous system must detect you as a safe, friendly person and the environment as a non-threatening one. If you need to use force to immobilise your child, it is a signal to stop and do something different, before the situation escalates. Restraining a frightened child while a medical procedure is carried out is a recipe for trauma, because of potentially overwhelming feelings of helplessness.

What is trauma?

Psychological trauma refers to a permanent change in the nervous system and not a distressing event, as the word has come

to be used in everyday language. This is significant because many adults do not understand that medical procedures can be traumatising to a young child; to the adults they seem like a non-event. The developing brain of a young child is particularly vulnerable at different stages of development. Trauma can happen easily and it may not be evident.

The current recommendation is that parents no longer hold children down. It should be a member of the healthcare team. The assumption is that it is less traumatising for a terrified child if restraint is not used by their most trusted adults/parents. The crucial test for a positive procedure is that the child’s nervous system stays in the socially engaged circuit or reverts there, after briefly switching to the danger circuit. It may be possible to achieve this with an experienced member of a healthcare team exerting restraint to part of the body for the few seconds it is needed.

You will naturally want to soothe your child and reconnect after a period of separation or upset. There is one situation where the risk of traumatising a child is higher because of the lack of opportunity to put things right immediately afterwards. That is when a child is distressed and held down to have sedation or an anaesthetic. The combination of forcibly restraining a child and sedating drugs is thought to imprint the fright in the nervous system. When this happens, a child does not have a conscious memory of having come back to normal. Instead there is an unconscious body memory of unprocessed fear. This may be triggered in the future by a similar situation to the one in which the memory was created.


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At a glance

Positioning for Comfort is a program that paved the way for parents to hold their children during medical procedures and keep them sitting upright where possible, instead of handing them over to the nurses.

The actual posture depends on the procedure, the needs of the technician and your child’s state of health.

There is a fine line between a hug and forceful restraint. Stop if you sense that you are using coercion, and discuss alternatives with the team.

If children are immobilised and feel helpless and frightened during a procedure, this is a recipe for psychological trauma.

CHAPTER 9Communication


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Chapter 9 - Communication

CHAPTER 9

Communication

‘We need to be as careful with our words as a surgeon is with his scalpel.’

Jim Warnke, Ericksonian therapist and minister

Communication comes from a Latin word meaning to share. This chapter is about being conscious of what you share about medical procedures, knowing that your young child is looking to you all the time for genuine reassurance and guidance. It is a two-way process that requires constant monitoring and a readiness to respond moment by moment to what your child needs.

Babies and young children are always unconsciously searching for clues in their environment with regard to feeling safe or threatened. We communicate all the time whether we realise it or not, and children constantly absorb the signals we send out. You can use verbal and non-verbal communication to decrease a perception of threat.

Non-verbal communication

Think about how you would engage your child to elicit a smile or to play a game like peek-a-boo. Your whole body conveys

friendliness. You make eye contact. Your facial expression is warm and inviting. Your voice has rhythm and a varied tone. Your body is relaxed and welcoming. Every part of you conveys the same message.

Have the same intention at medical procedures; children pick up on subtle differences and inconsistencies. If your child is sick, she may not be able to respond but she needs to know you are tuned-in, listening and communicating with her. When you take control of your emotional responses and anxieties, your right brain starts sending messages of comfort and calm directly to your infant’s right brain, instead of emitting stress and sorrow.

Feeling sorry for your child may come naturally, however children respond to this negatively as it increases their anxiety. Many people have commented on the shift they see in their child’s coping when they change their attitude.

Seeking Comfort

Beth Dun, my music therapy friend, plays her guitar and sings for the children on the Burns Ward when they have their dressings changed. She says:

I have learned to be the one unperturbed person in the room who the child can focus on when everyone else is looking worried and serious. I notice the kids look at me then look around at all the anxious adults then fix their look back to me − the only person in the room who seems to them to be happy and relaxed. Of course it works even better when the parents come on board too.


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Verbal communication

Paying attention to what we say as well as how we say it makes a difference. Words connect a child’s lower feeling brain and higher thinking brain. They help contain a young child’s feelings. At first, we can do it for them; then they can put a name to an object or feeling themselves. It gives toddlers control over their urges and three- to four-year-olds begin to have a sense of control over external events.

Mixed messages

Be aware of giving mixed messages even to babies – that is saying one thing, but your body language conveying another. Usually we don’t realise we are doing it. A common example is trying to reassure a child by saying ‘Don’t worry’ or ‘It’s all right’ or ‘You’ll be fine’. Even young children quickly come to learn that their parents usually say this when things aren’t all right, and it not only puts them on the defensive, it actually makes them distressed.

The following are also unhelpful:

focusing on feelings, e.g. ‘I know it’s hard.’

apologising, e.g. ‘I’m sorry we have to do this.’

criticising, e.g. ‘Don’t be silly.’

threatening, e.g. ‘If you don’t sit still the doctor will give you two needles.’

bargaining, e.g. ‘If you are a good boy I will buy you a toy.’

catastrophising, e.g. ‘She always gets upset every time we do this.’

The Pink Pig

A toddler was carried, crying and distressed, to the treatment room by her mother, who was agitated and saying, ‘This is the worst part ... she knows what’s happening. It’s all right baby ... Nothing really works ...’ The nurse reached into the toy box and brought out a squealing pink pig. It was as if, in spite of herself, the little girl couldn’t help but be interested. The toy engaged and distracted her, when her mother’s communication had done the opposite.

Young children only need to know what they will actually experience, and the younger they are, the more you will be able to cushion the impact of the procedure directly by your physical and emotional connection.


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You may need to interpret the medical jargon. Use simple, clear language, for example:

an intravenous cannula can be called a little straw

instead of tourniquet, say a little band that goes round your arm and gets tight

urine test – the doctor wants to check your wee/pee.

Beware of words with double meaning, or that could give the wrong idea, for example:

dye (die)

theatre (entertainment versus operating)

bone marrow aspirate (bow and arrow).

Immediately before and during the procedure

It can be helpful to offer children a choice over something that matters to them that will not affect the outcome. This can give them a sense of having some control. For example, ‘Would you like to lie down or sit up?’ or ‘Would you like to sit on my lap or the table?’

Don’t ask if she is ready and be prepared to take the lead if you hear the technician ask her. She may never be ready. The combination of giving your child too much control and almost certainly delaying the procedure will lead to anxiety.

This is not the time to start giving information. It is the time to focus your child’s attention on something positive. For short procedures such as immunisations, infants respond well to phrases such as ‘Look at Mum, look at Dad’ or ‘This is a job for super baby’ in a sing-song voice.

For longer procedures

Chat about familiar places and people.Play a game of ‘let’s pretend to blow out the candles’ to

combine breathing exercises.Silly or humorous talk – but not directed at your child.

If there is background noise, make sure your child can hear your voice above that. Get closer and speak up a little. Maintain eye contact where possible.


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After the procedure

When the procedure is over, let your child know what a good job she has done. Mark its ending by saying it’s over and comment on the last step, e.g. putting on the bandaid. If possible get up and move away, allowing your child to resume normal activities as soon as possible. Toddlers love praise and take it at face value. Praise your pre-schooler for something that contributes to the mastery of the procedure. They like to know they are an important member of the team. ‘It was helpful, the way you lay still.’ ‘You did a great job blowing out the candles.’ Be sensitive to their developmental level. Older children can tell when you are using praise for manipulation, such as comparing one child to another. This only puts extra pressure on your child.

Do not go overboard with rewards, relief or praise. It can convey a medical procedure is an ordeal to be endured.

Creating helpful memories

A helpful memory is something that can be created when you focus on the positives of a situation. This memory can eclipse the negative experience when you give it more weight when recalling a medical procedure. Parents sometimes find information about helpful behaviour at medical procedures useful in their normal everyday parenting. One mother called creating a helpful memory ‘the best parenting tip ever’.

It is possible to reframe an experience that has not gone very well. Memory is not recorded like a film; it is encoded depending on experience and changes over time. This means it is possible to put a positive spin on an event, instead of recalling the parts

that everyone would really rather forget. This is not creating false memories or being dishonest. It is simply doing the opposite to what we have an evolutionary tendency to do, which is focusing on the negative and repeatedly going over what didn’t work or was upsetting. It is important to acknowledge your child’s feelings and not dismiss them, at the same time as creating an accurate and realistic memory that will be helpful for future procedures.

What you decide to remember and focus on will depend on the individual procedure and what you think will appeal to your child’s memory; it could be the bandaid, the toy she played with, or the fact you had a nice cuddle and a chat. It may be something humorous like Mummy pulling silly faces or singing a song. What matters is that she can relate to it.


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At a glance

Your child is constantly looking to you for genuine reassurance and guidance, and letting you know how he feels. Be aware of how you communicate verbally and non-verbally.

Words can help contain your child’s urges and give her a sense of control over her emotions and external world.

During a procedure chat about something familiar that will engage her interest. It is not the time to give information or focus on feelings.

Give her a choice over something that will matter to her but will not affect the success of the procedure.

Children respond well to praise. If your child is over three years old, then praise her for something specific that contributed to the success of the procedure.

Create helpful memories by describing positive aspects of the procedure afterwards.

CHAPTER 10Distraction


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Chapter 10 - Distraction

CHAPTER 10

Distraction

‘A clown is like aspirin only he works twice as fast.’

Groucho Marx, Comedian

Distraction in the context of a medical setting means diverting your child’s attention away from the negative focus of a medical procedure and shifting it onto something more positive. If you are paying attention to one thing, you can’t pay attention to something else. Attention and distraction are two sides of the same coin. When the aspects of absorption and engagement on the positive focus are not appreciated, it is easy to misunderstand the use of distraction. A child is only distracted when he is truly attending to something else. Think about something that you love doing, how involved you become and how difficult it is for someone to get your attention. That’s what I mean by absorbed and engaged.

The purpose of distraction is never to trick or deceive your child – that only betrays trust and undermines your relationship. It is more about creating a sense of you and your child in this together, finding the best way to cope. It is about giving permission for what is happening ‘over there’ but not needing to pay attention to it or be bothered by it. The younger the child, the less he needs to know about what it going on over there. At around four years of age, most children make a transition to

wanting to be more involved. It happens naturally. The goal is to create a sense of normality and familiarity, just like you would in any other strange situation where you want your child to feel at home.

This helps to:

create a friendly environment, when combined with the other strategies

maintain the connection between you and your child

change the way the procedure is processed mentally and physically

prevent the escalation of tension.

Your involvement will depend on your child’s stage of development and particular needs at the time of the procedure. There are three different stages:

1. Do it for them – you create a cocoon that feels safe and secure and acts as a buffer. You are the distraction and positive focus.

2. Do it with them – put your focus on something positive together, so your child actively takes part and learns what to do by modelling and example. Toddlers cannot keep two ideas in their head at the same time and they love your attention.

3. Do it by themselves – engage their own minds on a focus of their choice, at first with you there and as they


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become confident, without you. Some children reach this stage at a surprisingly young age while others need more support, and that’s fine.

Useful questions for each procedure:

What comforts your child at home?

What does he or she like to play with?

What do you think will work best for your child?

There are many different variables at each procedure. What you do will depend on many factors including the type of procedure, the context, how long it is likely to last, how your child is feeling and what’s available to focus your child’s attention on.

Possible resources:

You, your voice, your face, your gestures (see Communication chapter)

Grab bag – objects you have put together in a ‘secret’ bag (see page 119)

The healthcare team

Clown doctors (see page 172)

The physical environment

Other family members

If you are in a child-friendly environment, with supportive healthcare team members, decide what each person is going to do. If someone else is distracting your child, then settle into your role as trusted companion. If you are the only one to hold and distract, work out how you are going to do it. Take your child’s favourite teddy or toy if he agrees, for familiarity and comfort, and a grab bag for novelty and stimulation. Children respond well when parents are playful, and while it may feel like you are making a fool of yourself, your child won’t think so. You can’t afford to worry what other people will think anyway.

Songs Beat Scepticism

Nicole had learned about music and singing as a way to distract her toddler at a procedure but she didn’t really think it would work. She just couldn’t see how singing would make a difference to what her son would have to go through when he had intravenous treatment. She had kept her scepticism to herself. When they were in the middle of his first IV and he was upset, everything changed. ‘In that moment, when you are desperate, you will do anything', she told me, and to her amazement when she started singing, he focused on her instead of the procedure and was able to have his treatment successfully.

There are broad categories of ways to absorb a child’s interest, although in practice there is a lot of overlap: the focus can be external, internal or a combination of the two.

Touch and movement

Music and singing

Toys and gadgets


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Breathing and blowing

Screens such as iPods, iPads, smartphones

Storytelling and imagination

Author Bryce Courtenay’s distraction process for his son Damon, who had haemophilia, has always heartened me. In his book April Fool’s Day, he recounts fuelling Damon’s imagination in the early years by telling him tales about Africa during medical procedures. As he got older and treatments continued, Damon was able to ‘go to Africa’ in his head and find immense comfort, because it had become his mental place of refuge from any pain – ‘his own private country’.

Distraction techniques for different age groups

Babies aged 0-6 months

Respond to kinaesthetic stimuli and sound

Sucking on a dummy or finger

Breastfeeding if not fasting

Touch – cuddling, stroking, rubbing skin rhythmically

Movement – rocking, patting rhythmically

Your voice

Infants and toddlers aged 6-36 months

All of the above and visual stimuli

Favourite toys, stories, interactive books, bubbles, music

Novelty toys

Breathing and blowing

Children aged 3-4 years

All of the above

Screens − apps like ‘Talking Gina’ on the iPad or smartphone; children love looking at family snaps or videos

Recordings of your voice telling them a story

Guided imagery – see my website at www.EverybodyStayCalm.com for a film of a mother putting a ‘magic glove’ on her daughter’s hand so she is not bothered by the butterfly needle, from the film No Fears No Tears produced by Leora Kuttner.


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Children aged 4 years and older

All of the above

Buzzy – a toy bee 8x5 cm that vibrates and is placed on the skin before an immunisation or IV. If the buzzing noise and sensation is well tolerated, this device changes how danger signals are processed, reducing pain. It has become popular with adults who have difficulty with needles – see www.buzzy4shots.com

This is a story from a paediatric colleague in the United States who had been learning about hypnosis and the imagination.

Developing an Imaginary ‘First-aid Kit’

On Friday morning, our six-year-old crawled into my lap and asked me, ‘What are you learning at your classes?’

I told her that I was learning about how to keep a box of bandaids in my head (bandaids are a big thing; my children ask for them for the tiniest scratch, scrape, or perceived injury) that never runs out.

She frowned, and asked, ‘Why just bandaids?’

‘That’s a really good question. I haven’t thought about that much.’

She stared at me and announced with conviction, ‘I would keep a first-aid kit in my head. It would have bandaids, and cream that never runs out, and a boo-boo bunny.’*

So since she was in trance already, with that declaration, we explored this idea more. She described the cream, she described the boo-boo-bunny that sticks on the sore spots without her having to hold it there, the Hello Kitty videos on the bandaids that she can turn on and off with her mind ...

And later that day, when she fell out of a tree, her father simply asked her, ‘Do you have that boo-boo-bunny from your first-aid kit in your head?’

He tells me the crying stopped instantly, she said ‘yes’, and wandered off to go play.

*A boo-boo is a small injury such as a bump or a scratch.


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When your child won’t be distracted

It is normal developmental progression for children to show an interest in the actual procedures after being happily distracted for years. A small group of children discover that they genuinely cope better by watching what’s going on. Most children prefer to focus on something else and continue to do so.

Some children focus on the procedure out of a new fear. They remain on guard, ready for evasive action and are not relaxed. It may still be possible to distract a child who is feeling insecure. Your calm confidence and creativity are crucial here. Keep something in your grab bag or on your phone, for occasions such as this. Four-year-old Tim did not want anyone to touch him, until he was magically engaged by a new toy gadget with coloured lights and moving parts that he could turn on and off by himself. The key here was the novelty value.

Children may occasionally have a more general anxiety disorder. Talk to your general practitioner if you have concerns.

Aversion

Parents wonder whether their child will be put off something they once loved because they have come to associate it with a medical procedure. This is an understandable concern, however if your child has built up truly positive associations with the object of distraction over time, these will be wired into the brain and the pleasurable connections will triumph over stress from a medical procedure.

I am astonished how many parents have been told by healthcare professionals not to distract their children during a procedure for

fear of creating an aversion to the object of distraction. One common myth that mothers have been told is that their infant will be put off breastfeeding if they choose to feed during an immunisation. Thankfully, it is precisely that – a myth. The most naturally powerful soothing agent available to a young one is breastfeeding.

Ideas for your grab bag

Groan stick

Frog and/or duck castanets – for songs e.g. Five Little Ducks, The Frog Jumped Out of the Pond One Day

Old MacDonald farm animals – for songs

Squishy ball

Bubbles

Sheets of stickers

Interactive books e.g. pull tabs inside

Interactive toys e.g. coloured lights, squeaky

Music – CD if no phone or iPod


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At a glance

Distraction shifts your child’s attention away from the negative focus of a procedure onto a positive focus.

Choose something that truly absorbs and engages your child’s senses and is appropriate to his developmental age.

It may be one or a combination of touch, movement, music and singing, breathing and blowing, toys and gadgets, screens e.g. smartphone and TV, storytelling and the imagination.

Start using it just before the procedure and continue to engage him until it is well and truly over.

Your infant will not be put off breastfeeding because you choose to feed him during a procedure.

CHAPTER 11Medications


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Chapter 11 - Medications

CHAPTER 11

Medications

Pharmaceutical drugs do not replace your role as parent.

You are the most important source of soothing, calming, pain-relieving chemicals for your child and no drug company has managed to reproduce your packaging − a trusted, warm human being.

However, for some procedures, and especially when a child’s body is already hurting as in accidents and acute illness, medications are a godsend. The first principle of procedure management is that a child is calm and relaxed, not agitated and distressed. You and the medical team need to work out how best to support your child using all the available methods – your presence, the tips and techniques from the previous chapters and medications. Your child may end up having a series of medical procedures – both to make him comfortable, and for diagnostic and treatment purposes.

There are groups of drugs that healthcare professionals commonly prescribe to prevent and relieve anxiety and pain. One drug may have more than one function:

analgesics – reduce or eliminate pain

anxiolytics – relieve tension and reduce anxiety

sedatives – have a soothing, calming or tranquillizing effect

anaesthetics – cause temporary loss of body sensations

amnestics – cause temporary memory loss.

Here are some of the most common ones. You can buy the first two over the counter and apply them yourself for minor procedures.

Sucrose

Sucrose is a sugar solution given by dropper or on a dummy directly onto a baby’s tongue two minutes before a procedure. The maximum dose is 2 ml, and the effect lasts five to eight minutes. One theory is that it causes the release of endorphins, which are the body’s own natural pain reliever. It is recommended for minor procedures and can be given in several smaller doses. I have known parents to use it for immunisations up to 18 months of age.


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You don’t need a prescription but most local pharmacists would only make it up on demand. The usual strength is 24% and it keeps about a month in the fridge. It is usually available in hospitals.

No More Tears

Colette used sucrose for pain relief when her son Ethan was a baby. He was born with a club foot and cried loudly every time he had treatment, which involved manipulation and repositioning of the foot into a plaster cast. When she asked what could be done about the pain, she was told, ‘Oh you don’t need to worry, all babies with clubfoot cry when they have this done, it’s normal’.

Her instincts told her that her baby was crying in pain. She sought alternative advice and next time gave him sucrose. He quickly settled down, to the extent that at subsequent treatments, he quivered with excitement when he saw the dropper coming, and there were no more tears.

Topical local anaesthetic − if the skin is not broken

Cream is applied to a particular area of skin (that is what topical means) to make it numb, before a needle is inserted, e.g. blood tests, intravenous cannulation and injections. Although you may not have to apply it yourself, it is helpful to know how to.

1. You have to know where the needle is going to go in advance.

2. Don’t tell your child that she won’t feel anything at all because she may still have some sensation; it just won’t be sharp.

3. Don’t rub it in, leave it as a blob on the surface.

4. Make sure you leave it on long enough – it’s a common mistake not to give it time to anaesthetise the skin properly.

5. Always combine it with distraction and other comfort strategies.

EMLA (Eutectic Mixture of Local Anaesthetics) cream is available all over Australia. You can buy two patches over the counter. Either these are impregnated with the cream or they come with a little separate tube. It is also possible to buy large tubes for frequent use. It is applied directly to the skin and is covered over with a transparent dressing called Tegaderm, which stops it from spreading everywhere. Leave it on for a minimum of one hour and a maximum of four hours. It does penetrate the skin a further millimetre or two over time.

There are tricks to removing Tegaderm without causing discomfort. Take two diagonally opposite corners and pull in opposite directions, so that it pops up without stretching the


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skin. If the skin is hairy, then the dressing can be peeled back slowly using citrus wipes to break the seal at the edges. Some hospitals and clinics use AnGel cream (amethocaine 4%) which works a little faster (45 minutes) and dilates the veins. It needs to be removed promptly to avoid inflammation. Some healthcare professionals prefer it.

Practising in the Comfort of Home

Four-year-old Jack had already had a painful blood test when he was younger and was not keen to go back. The nurse in clinic suggested the family have a practice run at home using a ‘special numbing cream called EMLA so that he needn’t be bothered by the needle’.

She showed his father how to apply the cream and Tegaderm and said to leave it on for 90 minutes. She showed them how to test the sensation, first on the normal skin, then on the numb patch with the open end of a paper clip. That evening, Jack and his dad experimented with their own patches of cream and both reported a change in sensation. Jack was able to feel the difference for himself and returned confidently to the clinic with his father for a blood test using EMLA. They watched a video together that Jack had chosen because he didn’t want to look at the needle.

Not all children like the numb feeling and some children prefer not to have a reminder that a needle is coming as it makes them anxious.

Topical local anaesthetic − if the skin is broken

If your child has a laceration then a different topical anaesthetic is used. Called 'ALA', it is a mixture of amethocaine, lignocaine and adrenaline. A piece of sausage-shaped cotton wool is soaked in ALA and put in the wound for half an hour and covered with the transparent dressing, to make the edges numb. The medicine also reduces swelling and bleeding, making it easier to close the wound with stitches or special glue. Find something to absorb your child’s interest while you wait, to contain anxiety levels.

Injectable local anaesthetic

Older children usually prefer this because they do not have to wait around for the cream to work and don’t mind the little needle. In younger children, it may be used following topical local anaesthetic, to reach the deeper layers. Once the skin is numb from local anaesthetics, then a larger needle can be inserted more comfortably, for a lumbar puncture, for example.

Altered conscious state

When your child is being given the following medications, you will need to discuss your role with the medical team, because of her altered conscious state. Unless she is being given a general anaesthetic, she will not be unconscious, even if she is very


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sleepy. You may want to maintain a physical connection and talk quietly to her, so she knows you are there, even if she does not remember afterwards.

Intranasal fentanyl

This drug has revolutionised the treatment of acute pain, especially when a child needs emergency treatment and is distressed on arrival. No one wants to wait for the topical creams to work and fentanyl is fast-acting. It is a strong opioid analgesic that relieves existing pain and allows any necessary procedures to go ahead quickly and without further discomfort. It is given by an atomizer device. A spongy cone is attached to a syringe and the medicine is squirted into each nostril, which children tolerate quite well.

Midazolam

Midazolam is an anxiolytic usually given orally to calm a child down before a procedure or an anaesthetic. Because it is an amnestic, it is even more important that your child is not distressed during the procedure, as she won’t consciously remember what happens and therefore won’t be able to process the experience. Occasionally it can have a ‘paradoxical effect’ – which means a child becomes hyperactive and the medical procedure cannot go ahead as planned.

Nitrous oxide

Nitrous oxide is also known as laughing gas and is used in childbirth. It is an analgesic with mild sedative and amnestic properties. Given via a facial mask, it has become popular and widely available in the efforts to reduce pain related to procedures, with the result that it is being used in younger and younger children. The problem for infants and toddlers is fear of the mask. It defeats the purpose to force a child to have pain relief, and some hospitals do not use it in children under two years of age.

Over-the-counter analgesics

They do not work well for the short, sharp pain of procedures, but are good to have on board when pain or inflammation is


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expected to continue afterwards. Check with your doctor or the healthcare team beforehand.

A combined approach

The last decade has seen a welcome increase in the use of drugs for pain management, especially at medical procedures in hospitals. My hope for the next decade is that pharmacological methods are routinely combined with:

an increase in the education of parents about different non-pharmacological methods to manage pain in infants and young children

the opportunity for all children to learn coping skills and develop confidence in their own abilities.

At a glance

Pharmaceutical drugs do not replace your role as soothing, pain-relieving parent. Nor should they be allowed to interfere with your child’s ability to develop coping skills and mastery over time.

Medications are useful before and during a procedure to relax and calm children who are agitated and anxious or likely to become so.

Sucrose given by mouth and topical local anaesthetic can be purchased over the counter and administered by you for minor procedures.

There is a range of other drugs that healthcare professionals may use.

Unless your child is having a general anaesthetic, she will remain conscious. Stay connected through touch and voice so she knows you are there, even if she cannot respond and may not remember.

CHAPTER 12The Unexpected


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Chapter 12 - The Unexpected

CHAPTER 12

The Unexpected

'I am prepared for the worst but hope for the best.'

Benjamin Disraeli, British politician

No matter how well prepared you think you are for a procedure, a successful outcome often has to do with how you and the medical team cope when something unexpected happens. This is when individuals and organisations are tested the most. It is easy to overlook simple steps that can make a big difference, such as keeping other team members informed about what is happening, and listening to each other. The more the adults communicate and work as a team, the better for your child. Make sure you know who everyone is and what they do, before the procedure starts.

Delays

Delays are so common it is sensible to expect them. Allow plenty of time even for a scheduled appointment. Young children don’t have a sense of time passing so they don’t have a problem with being kept waiting, but adults often do. The problem for children is that the longer they have to wait for a procedure, the more chance there is that they will get hungry, restless or tired. If they are unwell, they will have even less reserve.

If children are hungry, they want to eat – now! If they are bored, they want stimulation – now! It can be difficult if your child is fasting because she won’t understand why she can’t eat. The rules have relaxed about letting children sip water – check with the staff. Have plenty of ways to amuse your child and keep some surprises for the actual procedure. If the environment is noisy and bright it may be hard for your child to rest, depending on his normal sleep habits. Make sure you take something he is comfortable in just in case, like a stroller. If the Emergency room is busy and it is the middle of the night, you will be glad you did.

One of the hardest situations is when a delay affects the rest of the family. Older children may need picking up from school or babysitters need to go home and you can’t be in two places at once. Mobile phones are a godsend and being able to call for backup will help reduce anxiety and allow you to focus on the one having a procedure. If you are travelling by car, allow plenty of time to find parking. You don’t want to be worried about the meter running out, so take plenty of coins. If you choose a car park with a boom gate, check the closing time. If you regularly use public transport, you may already be used to allowing plenty of time.


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Emergencies

An emergency is unplanned and can disrupt family routine in more ways than one. If it occurs in the night, when everyone would normally be asleep, you might have to let go some of the plans you had about distraction and other techniques. It is of primary importance just to be there for your child, holding him, lying down with him and staying calm. Remind yourself it won’t last forever and concentrate on keeping your emotions in check and your child comfortable (see page 76 In case of emergency).

Miscellaneous scenarios

don’t panic if you forget your grab bag. You will probably have a phone or handbag with you, and there may well be toys and books at your destination. Children love stories at any age and you can always sing – children don’t mind if it’s not perfect

if you have forgotten sucrose or local anaesthetic cream, you can ask for these when you get there or reschedule if that’s the most appropriate option. Most clinics do have a supply, even if they do not routinely use them

when you arrive, you may find the environment is not as child-friendly as you would like. There may be crying children, it may be clinical and unwelcoming, and there may be equipment or machinery on display and so on. Pause, go outside for air and to re-centre yourself, self-talk in a calm way and decide how you can make your child feel more at home before you go back inside.

Your child behaves differently from usual

My friend Linda says one of the most predictable things about children is that they are unpredictable. Her observation applies to children at medical procedures. Sometimes parents would come back from a procedure and say, 'It worked well when I did it this way before, why didn’t it work this time?' Here are some possibilities.

A shift in your child

This could be natural developmental progression – he needs a different approach to engage his interest. Find some better apps or give him a job and get him involved. He may have seen or heard something that he has played over in his imagination and affected his confidence. Ask him so that you can do a reality check together. You may not get to the bottom of it but next time he may seem relaxed again.


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A shift in you or the family

There may be some general family stress that your child is picking up on, which seems quite unrelated to the medical procedure. However, because children are very sensitive to a change in mood or atmosphere, they can be a family stress barometer.

Sometimes taking a child to a clinic or hospital appointment is just another thing you have to fit into an already busy life. Sharon noticed the change in her young son at his procedures not long after she went back to work. She realised how important it was to leave enough time and plan to do something nice afterwards and not rush straight back to work, or childcare.

You have an unexpected reaction during the procedure

Procedures can occasionally have an unexpected effect on you, the parent. The nature of the procedure may trigger an unexpected memory or feeling. Your child may also be picking up anxiety if you are worried about the results of the test. You can only do the best you can in that moment. Let the staff know, as you may not be able to support your child and they may be able to help you.

Sometimes parents feel faint and need to lie down. Carol-ann started to feel dizzy, slipped her young son’s hand into her husband’s saying 'Daddy loves you too' as she quickly left the treatment room.

(See Quick Recovery Tip page 79)

Some parents recall having a medical procedure as children, which they had no conscious memory of until that

moment when their own child is undergoing a medical test or treatment. It can be quite emotional.

The mother of a two-year-old girl having medical imaging, which involved the insertion of a catheter into the bladder followed by a series of X-ray pictures, was suddenly overwhelmed by feelings from her own childhood. She became aware of having had the very same procedure herself as a young child.

Sometimes medical procedures can trigger memories for parents of seemingly unrelated painful events as a child, where they were not supported. It makes it hard for them to continue to support their child. Depending on the circumstances, you may need to review who takes your child to further medical procedures. You may choose to get some help for yourself, or you may find that self-awareness and compassion are enough to give you the strength to be there. It is a very individual thing.

Complications

There may be a complication related to the procedure. It is important that the team sticks together and people do not start to disengage or blame each other. The main recipient of any resulting anxiety is the child. It can be helpful if everyone has been introduced to each other beforehand and people already feel comfortable communicating with each other. Parents need to find that balance between supporting the medical team and protecting their child.


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A Balancing Act

Kim, mother of Li who was born 12 weeks prematurely with a tracheo-oesophageal fistula, put it like this:

I saw other parents get upset and panic and realised it wouldn’t help their baby. Instead, I trusted the doctors and nurses, as I knew this is what would help my baby ... It is about balance. I thought about the procedures in a way that Li would not be traumatised, but I did not overprotect him. I did this by thinking about honesty, by staying true to my own feelings, and this keeps the external world realistic and in my control.

At a glance

There will be times when things don’t go according to plan. Communicate and work as a team from the start, to get the best results, especially if there turns out to be a complication.

Delays are common. Have contingency plans for the rest of the family.

If a previously coping child develops anxiety, check your own behaviour or family for stress first, and if you don’t come up with anything, then think about what is going on for your child.

Your child’s procedure may rarely trigger a buried childhood memory of yours. Do the best you can and follow up with professional help if necessary.

CHAPTER 13Distress


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Chapter 13 - Distress

CHAPTER 13

Distress

‘This junior scientist is a meticulous observer, a zealous investigator, and a cataloguer ... There is only one thing

wrong with his science − the conclusions!’

Selma Fraiburg in The Magic Years

Help Me Calm Down

Xavier was crying in distress. Eight months old, he had been taken to the Emergency Department for his first intravenous treatment for haemophilia, after a bleed into a muscle. The young doctor interpreted his behaviour as ‘he knows what’s coming’ meaning the intravenous treatment, but Xavier’s developing brain couldn’t work that out. His mother Leanne was also upset; her son’s lifelong treatment of a condition he had inherited from her was about to begin. When his parents were told it would be better if only his father went into the treatment room and it would take a couple of minutes, they didn’t question the doctor. His father provided a loving presence, although it was not possible to calm Xavier as he was already crying when the procedure began. Forty-five minutes later the three distraught members of this family were reunited and Leanne could finally comfort Xavier on the breast.

Young children need help to sort out real from perceived threats in healthcare encounters. Failing to understand this means far too much is expected of infants like Xavier who can’t regulate their own stress. Young children react by crying loudly, screaming or yelling. If they are very sick, it can be harder to tell if a child is distressed, but most mothers know instinctively.

When we place excessive demands on children and let them cry for too long it can be damaging. In young children whose brains are developing and very vulnerable to repeated episodes of stress, it can affect their long-term development. It is a lot easier to prevent problems than to treat them.

Imagine if someone had spent 10 minutes with Xavier’s family before his treatment, connecting with Leanne’s sorrow about her son’s suffering. She may have been able to calm down enough to put Xavier on the breast to soothe him and they could have all gone into the treatment room together, supporting each other. Leanne said the experience taught her to be more assertive.


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The message behind the distress

What children are telling you when they are distressed at a medical procedure is that they have intense feelings that are out of control and need to be calmed. Are they being manipulative? No! Are they spoilt brats? No! The source of the distress may not always be obvious, but whatever the cause, you need to take it seriously.

At first, you may be wondering if this is normal behaviour or whether your child is distressed and needs help. Sometimes healthcare professionals do try to normalise distressed behaviour. They may say things like, ‘Don’t worry all babies cry when we do this’ or they may dismiss it. ‘It’s very strange. No other child has been upset when we’ve done this.’ This doesn’t make it okay. What we are concerned about is the emotions underneath the behaviour that are crying out for an adult to soothe them.

How you deal with the situation yourself and how you react to your child’s feelings and behaviour will have an enormous impact on her ability to cope now and in the future. It’s at times like this that we can feel terribly helpless and it’s important to acknowledge our sense of despair and powerlessness as parents. Sometimes our true feelings can be hidden underneath the embarrassment and worry that people think we are ‘bad parents’ because our child is not behaving better. Connect to your deeper feelings that you really do care for your child and meet them in their pain. Set aside all thoughts of how you wish your child would behave differently and accept that she is behaving how any normal child would who is overwhelmed with feelings. It will only add to her distress if she feels alone.

Distress and the timing of procedures

It is not a good idea to start a procedure if your child is out of control, except in rare emergencies. If distress is present from the beginning, it will only escalate. She will be in a hyper-aroused state with lots of stress hormones cascading through her body. Comfort with touch, warmth, your voice and your relaxed facial expression. Stay calm and remember to breathe.

If your child starts to cry uncontrollably during a procedure and doesn’t respond to the usual methods, surprise can be a way to break the cycle. Use songs or phrases, and essentially match the energy of her distress. The goal is to get her attention, but without frightening her of course. Start singing a familiar song or speak loudly and once she is engaged, sing a little more quietly until you notice a shift in the loudness of her crying. Then slowly reduce the volume of your voice to something more like normal or even whispering.


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Need to Express Rage

My music therapy colleague Beth Dun has learned that for some of the young children with burns, when they are having their dressings changed, they just have to be able to express their feelings and be allowed to yell. She continues to play and sing while they go through this phase and is there for them when they are ready to reconnect. The important thing to note is that she does stay present for them, and is there for them when they are ready to reconnect. Their distress is short-lived and doesn’t have much impact on the overall experience. The children often toddle off from the procedure, waving goodbye, and when they return the following week, are looking forward to it.

Don’t let your child have intense feelings for too long, and stay connected and positive so they do not feel alone. It can be tricky when the healthcare professionals want to keep going and you know your child has truly had enough. Read more about this in the next chapter, Speaking Up.

What if children remain distressed and can’t be soothed?

Communication with the healthcare team is the key here. In the short term, decisions need to be made about whether it’s possible to stop the procedure, calm your child down and start again. Does she need procedural sedation? Is it possible to delay the procedure, or does this put your child’s physical health seriously at risk?

When to seek extra help

If children are already primed for fear and pain because they have had previous negative experiences, acknowledge their feelings around fear and distress, but do not feed into them. They need a fresh approach, with small steps to regain confidence in their ability to cope and trust in the adults. You may decide you have enough information to discuss what to do with the team carrying out your child’s next procedure, or you may decide you and/or your child need extra support. It’s a question of degree and what’s available. See Appendix for more information.

Psychological help is recommended if:

1. your child is out of control at medical procedures

2. you feel helpless

3. your child is also anxious in areas of her life other than procedures.


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At a glance

When we expect too much of children at medical procedures they can become distressed. If it goes on too long, it is damaging to their health and development.

Your distressed child is telling you she is out of control and needs calming. It can trigger a variety of responses in parents and staff. She needs your loving support and understanding so she doesn’t feel alone.

If your child becomes distressed during a procedure, do not let it go on too long. Discuss with the healthcare team. Stop and soothe. Change tactics: consider delay or medication.

It may be helpful to seek psychological support for you and your child.

CHAPTER 14Speaking Up


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Chapter 14 - Speaking Up

CHAPTER 14

Speaking Up

‘It takes two to speak the truth: one to speak it and another to hear it.’

Henry David Thoreau, Philosopher and writer

Young children cannot speak up for themselves − we need to do it for them. Sometimes it is crucial that we advocate for our rights and those of our children.

The whole notion of speaking up can seem daunting, especially in a medical setting. This has been confirmed by medical friends and colleagues of mine who are parents too. We have found ourselves watching helplessly as our own children became distressed by what was happening to them and wondering why we didn’t speak up. You may be able to relate to reasons that are commonly expressed:

concern that your child’s care will be compromised

fear of rocking the boat with uncertain consequences

family and cultural values, such as deference to the medical profession

believing the doctor or nurse knows best

fear of what people may think of you or looking foolish.

Sometimes parents are told that if they question the medical treatment or how things are done, then their children will not learn to trust the system or the healthcare professionals. On the contrary, children like to know that their parents are watching out for them and have their best interests at heart. The only problem would be if it were not done respectfully.

When is the best time to speak up at a procedure?

Is the time to speak up before, during or after a procedure? Ideally, if you know what you want to achieve before the procedure starts then that is the time to speak up.

Need for a Positive Experience

Catherine was in Emergency with her toddler waiting to have a drip put in. The doctor came into the cubicle, introduced himself and set about his job. Catherine noticed immediately that her son did not feel comfortable with this young man. Knowing that


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Lachlan had years of medical procedures ahead of him and not wanting to get off to a bad start she said politely, ‘I know you’ve got a job to do and it is nothing personal but I am wondering if it would be possible for someone else to do the procedure as I can see that my son has become unsettled?’ Soon after, a friendly young female doctor came in and Catherine could see that her son was completely relaxed again. The procedure went ahead without a hitch.

Catherine was experienced at attending medical procedures, not with her own son, who was still an infant, but because as a child she had often been to hospital with her mother and brother. He had a condition that required recurrent invasive procedures, and she would watch her mother interacting with the healthcare professionals. She was confident that it was not the upcoming procedure itself, or anything she was doing that was unsettling her son, but something about a mismatch between her son and the first doctor. Some people would not be that confident or assertive with their first child in a semi-emergency situation.

Sometimes parents know what they want to say beforehand, but find it hard to express themselves. They find their voice during the procedure.

Be Brave for Your Child

Eight-month-old Nathan was wrapped in a sheet by the nurse during several failed attempts at intravenous cannulation. His mother Michelle was suffering watching her child’s distress, and, at the same time, finding it hard to speak up. It was only when the doctors started talking about giving him sedation that she plucked up courage and asked to try another way. She held him in her arms, put him on the breast, and the cannula was successfully inserted on the next attempt.

What if you speak up and no one listens?

Being able to speak up is one thing; getting yourself heard may not be straightforward.

From No Communication to Gently Does It

Our family was living overseas when our son toddled chin-first into the steely modern art structure in the lobby of our apartment building. He sliced open the skin under his lip, requiring several stitches. I was not allowed into the treatment room to comfort him, despite my strong protests and his obvious panic. Neither the planned procedure nor the relevant policies about family involvement were explained, leaving me disempowered and my son traumatised.

Several years later, we visited a different doctor with a different child in a different country. When she explained a blood test was necessary we warned her that this son, Oliver, had a tendency to react strongly to any medical procedure. Just as Oliver began to wail and flail about the doctor quietly slipped from the room. She returned clutching a small bottle in her hand and, turning to my husband, said gently, ‘Okay Dad, your job is to blow as many bubbles as you can over your son’s head’. Dad blew little bubbles, big bubbles, all types of bubbles and Oliver never even noticed the needle slipping cleanly under the skin.

www.susanbiggar.com


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Some children need more time than others to get used to their surroundings and Abi was one of them.

Learning to Trust Your Instincts

Natalie had taken her 14-month-old daughter for an electrocardiogram (ECG). Electrodes are stuck onto the skin on the chest wall over the heart and connected up to a machine, which makes an electrical recording of the heartbeats. If a child is settled and everything is wired up properly then it is a quick simple procedure. The room was rather dark and unfriendly and Natalie asked if she could play with Abi for a few minutes to get her used to the unfamiliar room. The technician dismissed the request saying, ‘I’m very experienced, let’s just get it over and done with’. The whole thing took far longer than it needed to.

While Natalie chose to go ahead without the extra time to settle her daughter, the experience taught her to trust her instincts and be more assertive.

Speaking with Your Feet

Nicole took Oscar to the local Emergency Department for intravenous treatment. It was becoming a familiar routine because he had haemophilia and was now an active little boy. On the two previous occasions, he had been sedated to make him comfortable because he had veins that were difficult to cannulate. There was one change since the last occasion – the family had moved interstate. Nicole was shocked when the doctor at the new hospital rejected her request for sedation. She knew from experience what Oscar needed and she picked him up, put him in his stroller and started to walk out. The nurse in charge called her back and the staff took the time to listen to

Nicole. Oscar was sedated so that he could have his treatment without being distressed. Not long after that occasion, he had a Port-a-Cath inserted and Nicole started to give him his intravenous medicine at home. When he was 30 months old, she told me, ‘He loves having his treatment. It’s as normal as brushing his teeth!’

Knowledge is power

In any situation if we are asking someone to change what they are doing, it is helpful to be able to make suggestions about what we would like to have happen instead. Parents appreciate having the knowledge to complement their instincts by making practical suggestions and decisions about the healthcare of their children. They find it makes a real difference to their child’s experiences. One of the mothers from my workshops put it like this, ‘I found the sessions empowered me to know what is best for my child and how to work effectively in educating and interacting with the medicos my son has and will encounter’.

But what if you don’t know what else to suggest? It is one reason parents don’t speak up in the medical setting, even though they know what they don’t want. They intuitively sense that their child would be a lot happier in their arms or sitting on their lap but until someone on the team has actually told them that this is all right, and that the procedure can still be performed this way, they are reluctant to suggest it. Remember Sarah, who was so happy to know it was all right to have her daughter on her lap? Parents want to do the right thing for their child. You don’t have to be able to offer alternatives.


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Knowing What You Don’t Want

David was clear about what he didn’t want to happen at his son’s medical procedures. As a young child, he had been forcefully held down as he struggled during a procedure and was adamant his son Chris would be spared that sense of shame and powerlessness. He would say politely when they went to the Emergency Department that he knew the doctors had a job to do and he knew it might make it more difficult for them, but David insisted, ‘He’s not to be held down. That is something that we don’t do.’ Over time they had had mixed responses, but no one ever refused.

Everyone needs respect

When you are negotiating on behalf of your child, it helps to understand the point of view of the staff, while still staying focused on what you want and being assertive. The amount of effort you put into a particular relationship with healthcare professionals looking after your child will depend to some extent on how ongoing that relationship is going to be. No one person has all the answers, so there is every reason why the staff should listen to you, just as you listen to them. They have a job to do and may be feeling the pressure of time or other demands.

If people feel criticised, they can get very defensive. If you are able to state clearly and honestly how you feel and what you need, rather than what you think the healthcare professionals have done wrong, and how they need to put it right, you are more likely to achieve your goal. Empathic understanding of another does not mean that you have to compromise your own

needs and values. Adding an appreciative comment at the beginning or end helps too, for example, ‘I appreciate you taking the time to listen to me’. Make your requests as calmly as possible.

In the workshops I have conducted, some parents said they wanted and even expected to take the lead at their child’s procedures. Having the knowledge that different strategies worked for different children, and finding a variety of ways to support and interact with their children, restored confidence to them as parents. They once again had a feeling of control over their child’s experience and their ability to help make it a positive one in a medical setting by speaking up.

Liz is an example of a parent who has benefited from learning skills and putting them into practice.

It’s not about being demanding. It is what works for Hamish. We are positive and confident when we go for procedures and we have never had a problem. It has changed our perspective on the hospital.

Hamish’s mother, Liz


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At a glance

You are your own best advocate and your child’s voice.

The healthcare professionals and you are both experts – but you are authorities on different subjects.

Speak up whenever you need to and as early as possible. It is easier to prevent problems than treat them.

Be clear and assertive about what works for your child and tell the team.

It helps to offer an alternative if you want something done differently, but it is not essential. Your job is to protect your child emotionally, not do the procedure.

CHAPTER 15Different Contexts


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Chapter 15 - Different Contexts

CHAPTER 15

Different Contexts

Having Surgery

A Fun Place

Nathan had major surgery to his skull when he was 20 months old. His parents applied the same principles they had learned to help him cope with frequent medical tests and treatment for an unrelated condition. They did it consciously, choosing to be mindful of their behaviour, language and emotional responses throughout his stay. They set the goal of making hospital a fun place, including during dressing changes. The doctors commented on the speed of his recovery.

Before admission

Enquire about pre-admission services when your child is booked in for surgery, especially if you or your child is anxious, or there have been previous negative experiences with medical procedures or surgery. It may be possible to have an appointment with a play specialist to familiarise your child with the hospital so she knows what to expect.

Before reading a book with your child about going to hospital for an operation, make sure it is appropriate for her age. Preschool-aged children need picture books with simple, accurate information but not too much detail. This age group are particularly imaginative, notice everything and can easily come to the wrong conclusions.

When you are taking your child to hospital, be honest about where you are going. Not surprisingly, children react badly when they expect to be taken to their grandparents for a sleepover and find they are somewhere completely different.

Once you are at the hospital

Children are not usually allowed to eat and drink for four to six hours before an anaesthetic. If there is a delay, you may find your child can sip water − check with the staff. If hydration is an issue, then your child will receive intravenous fluids.

On arrival, your child may be admitted to a ward first or wait in a holding bay. The next area is the induction room, where the general anaesthetic is given, and then your child is taken into the operating theatre for surgery. Parents may be able to stay with their child in until she is asleep. Staff do not usually put pressure on parents to stay. It doesn’t help them to have parents around who are agitated or upset. Listen to the free self-calming recording that you can download from www.EverybodyStayCalm.com to help you relax.

The walk from the holding bay to the induction room can sometimes feel a little sombre. If your child is alert, chat about something you know will interest her, make her feel at ease. Review the dot points in the Communication chapter on page 102. Take a novelty toy from the grab bag or have your smartphone handy.


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The induction

During the induction, take your lead from the anaesthetic staff who are often very experienced at distracting children with stories or toys. If your child has a dummy, take that with you.

You and your child may be given a choice between an intravenous cannula or mask for the anaesthetic drugs. Have these discussions with the anaesthetist beforehand so that there are no misconceptions about what you and your child are expecting, whatever you have chosen. There is no right answer. Give your child the opportunity to handle and play with an anaesthetic mask in advance if this is your choice. I heard about a little girl who grabbed the mask from the anaesthetist at her induction saying, ‘I can do that myself’ as she held it to her face!

Even if children have a mask to go to sleep, they may wake up with a drip in back of their hand or arm, because that is how they will be given medicines to make them comfortable and some fluid if they will not be drinking for a little while after surgery. My friend’s three-year-old daughter Olive chose a mask for her induction. She was most indignant when she woke up to find a drip in her arm. Let them know this might happen.

Do explain things in a positive light, even to yourself. It can be helpful for your child to be a little bit hungry and thirsty when they have the anaesthetic because they are likely to feel like eating and drinking a little bit sooner when they do feel better after the anaesthetic. It depends on the surgery, but most of the time children can eat and drink afterwards.

After the operation

If it takes longer than you expect for your child to come out of surgery, it doesn’t necessarily mean there is a complication. Theatre lists change and times change and it can seem very slow. When the operation is finished, your child will be taken to the Recovery area.

After the operation, it helps to tell your child:

You can look forward to feeling better.

You may have unusual sensations afterwards, which means that everything is settling down after the operation.

You are healing, recovering, getting better.

If you need anything extra to stay comfortable, you can have that from the nurses.

Focus on what you want to happen, rather than what you don’t. It is not helpful to make negative suggestions, for example: ‘Here is a dish in case you feel sick’.

Children can go home a few hours after most operations. After major surgery, children are admitted to the wards.


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Emily had many operations in the first three years of her life and her parents thought carefully about how to normalise her childhood. ‘Between operations, we often visited the hospital staff and other children in order for her to maintain that trust and keep her familiar with the environment.’

Emily’s mother, Gabriella

To consider

The principles of coping with medical procedures apply to major surgery. If you or your child is anxious, ask about attending a pre-admission clinic.

Your child will receive drugs for general anaesthetic either via a facial mask or intravenously. Familiarise your child with a mask beforehand.

Have something to distract her for areas such as the waiting room and the walk to the operating theatre.

Use language of comfort and healing and avoid planting unhelpful suggestions.

Medical Imaging

Medical imaging often creates uncertainty in young children because of the size and nature of the equipment − huge, odd looking and sometimes noisy machines that take X-rays, CT (computerised tomography) scans, MRI (magnetic resonance

imaging scans, nuclear medicine scans and ultrasound scans, among others. Letting children touch, explore and ask questions is helpful, however it is not always possible. Seeing photos of young children having the procedures can be useful, or at least a photo of the machines. Check with the Medical Imaging Department where you are going what is available. Beware of language that could create different expectations – for example, ‘take a picture’ and the child imagines a handheld camera. Taking a picture of ‘your insides’ may create a fantasy. I remember a child who was told the doctor was going to look at the back of his eye, and he thought they were going to take out his eyeball so they could see the back of it.

Children need to be absolutely still for the imaging procedure to be successful, so either anaesthesia or sedation may be used depending on age and requirements.

Sometimes children need an injection of contrast dye into a vein during a scan as a kind of highlighter. Check beforehand so that any preparations can be made for this procedure if your child is going to be awake. Check about the availability of play specialists and websites for preparation material.

To consider

The large, often noisy equipment is a source of threat and uncertainty for young children – familiarise beforehand through photos and play. Find out what’s available from individual departments or centres.


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Dentistry

These days, dentists are trained in behavioural methods to work with children of all ages. They have recognised the importance of early positive experiences, so that children do not grow up with a fear of the dentist and then avoid treatment as adults.

If your early dental experiences were traumatic, don’t let on to your child. It is important not to ‘pass on’ any anxiety or phobia you may have. Choose a dentist you feel comfortable with, who likes working with children and be guided by them. A very young child may sit on your lap in the dental chair, and your job is to model calm and look happy. The dentist will be able to carry out an oral examination even without her full cooperation, provided they know how to engage your child through play. By the age of three years, most children will happily sit in the chair

themselves. My dentist says that if parents are in the room he likes them to sit in the corner, read a magazine or newspaper, and look bored! To be able to do their work effectively, the dentist does need your child’s trust and full cooperation and, ideally, you will wait in the waiting room as soon as they are old enough – usually by six to eight years of age.

To consider

Choose a dentist you trust, who likes working with children.

Expect to take a back seat early on. Dentists need your child’s full cooperation.

Babies in Hospital (Neonates)

Having a baby in the neonatal ward or intensive care can be a roller-coaster of a ride, especially in the early days. Parental involvement in neonatal wards and intensive care units varies around the world. Traditionally pain management at procedures has been the responsibility of the nurses. They are currently exploring ways that parents can be more involved. One method is called Kangaroo Care. Mothers or fathers hold their premature babies against their chests and provide skin-to-skin contact for 30 minutes before a heel prick, which makes the procedure less painful. Another method is the facilitated tuck, when parents use their hands to support and hold their premature baby. Parents report feeling less stressed when they can contribute to their infant’s comfort.


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Positive Vibes

Kim, mother of Li, contributed to her son’s care in this way.

When Li had blood tests, the doctor turned me away because he thought I would get upset or nervous. I knew the doctor was doing the right thing and that getting upset would not help Li, so I stayed calm. The child picks up how the parents feel. I remember having a discussion with my partner where I asked him not to say negative things, not express feelings about Li when we were around him. If he says things such as ‘poor Li’ then Li would pick up the vibes, and he is already anxious enough about what is going on. When I was around Li, I tried to build the positive attitude that everything was going to be okay with him.

To consider

Nurses are researching ways that parents can be more involved in procedural pain management of their premature infants.

One mother found that non-verbal right brain communication supported her son.

If you want to be physically involved in your infant’s pain management, discuss it with your team.

Children with Disabilities

Two mothers share their experiences at procedures.

Jane and her son Nick

My son, Nick, is a joyful, social young man with a great sense of humour. He also has cerebral palsy, an intellectual disability and epilepsy. He is not able to speak and so uses visual cues, facial expression and body language to express himself and communicate with others.

Nick and I have been through a lot together and our experiences have taught us what works and what doesn’t work for us. Incorporating that knowledge into plans lays the groundwork for procedures to go smoothly. Just because Nick doesn’t speak, it doesn’t mean he can’t hear or understand. It’s so important for people to engage and work directly with Nick; I can be an interpreter when needed, but not the go-between. When procedures have been traumatic for him, it has usually been because preparation was inadequate and my knowledge was not valued.

One of the most common procedures Nick has had is induction of anaesthesia. Nick has had many general anaesthetics, mostly for orthopaedic or dental procedures. The way it works best is for the anaesthetist to spend time with Nick and me beforehand, listening to what has worked before,


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exploring any current concerns and developing trust and rapport with Nick. Being listened to helps me relax! Nick finds unfamiliar situations hard to understand and has trouble regulating his emotional responses, so medication to help him feel relaxed is really crucial to a successful procedure. Then it’s important that he is calm and feels safe. He needs someone he knows and trusts to stay with him when the needle is inserted and the anaesthetic is given. When all goes well, he looks at me and we talk together while the needle is going in and he drifts off to sleep. When he is not given the medication to calm him, or I am not allowed to go to theatre with him until he is asleep or someone tries to rush or force him to do something, then the situation rapidly deteriorates to one in which he becomes increasingly frightened and resistant, and he then lashes out at everyone to make them keep their distance.

So the message is:

1. Value your expertise.

2. Ask to speak to the healthcare professional doing the procedure well before it begins. Discuss the ways you can work together to support your child through the experience.

3. Share some ideas about how best to communicate and work directly with your child to ensure he or she is actively involved.

4. Explain the need to move calmly through all the steps required.

5. Arrange to meet afterwards to review what went well and what could be improved for next time.

Helen and her son Andrew

My memories of Andrew’s early days were that despite feeling dismayed and overwhelmed knowing that Andrew had a disability, the overriding emotion was of wanting to protect and comfort him.

We made it very clear to the medical staff that he was dearly loved and precious to us (just in case they thought that his disability made it less important that he receive the very best of care!). I cannot think of any occasion where we felt he received poorer quality care due to his having a disability.

From early days, it was clear that Andrew enjoyed listening to music. We were told that children were welcome to have their favourite toy come in with them to pre-op and that they would have it there for them when they awoke. Andrew was never one for fluffy, cuddly toys. His favourite toy, a Fisher Price children’s cassette player complete with Wiggles apes, was switched on and playing when he was wheeled into surgery. When we saw him afterwards the music would be on and playing even though he was barely conscious.


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Midazolam was frequently offered and usually administered prior to induction. My husband or I would always come with him, hold his hand, sing and talk to him while ‘going under’.

No matter how hard his medical team have tried to help him with his anxiety, this worsened when he had 18 months of numerous procedures and surgery for serious medical illnesses. Before Andrew underwent surgery to create his colostomy, his stoma therapists provided us with a doll with a stoma and bag (cute!). We even drew a line across the doll’s stomach so we could prepare Andrew for the fact that he would see ‘a line’ next to the colostomy. I found it very helpful to talk to a psychologist who could help us to provide the type of information that best matched Andrew’s cognitive level.

Clown doctors

The most successful anxiety management technique has been the presence of clown doctors at the Royal Children’s Hospital, Melbourne. Visits from the clown doctors make Andrew much more cooperative during procedures such as blood tests. They easily distract Andrew from what is happening to him. Andrew loves their slapstick humour (especially the fart jokes!). He loves the fact they’ll play his favourite songs (still The Wiggles). Also, I believe he enjoys their visits because they put him in control, i.e. he asks for songs, they sing; he asks for juggling, they juggle. Every other interaction in the hospital works very differently to this.

Clown doctors have been so important that when Andrew had to have his colostomy surgery we spoke to the clown doctors and found that they could arrange to meet us in pre-op. I can’t tell you how much it helped us bear the anxiety immediately before the operation. Two clown doctors followed Andrew into the induction room. He went to sleep hearing them softly singing Twinkle Twinkle Little Star. Their presence had a soothing effect on Andrew and everyone around him that afternoon.

To consider

The essential needs of children with disabilities and their parents are similar to all families.

It is particularly helpful to match preparation with your child's level of understanding and ability to regulate emotions.

CHAPTER 16Down the Track


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Chapter 16 - Down the Track

CHAPTER 16

Down the Track

‘In the final analysis it is not what you do for your children but what you have taught them to do for themselves that will make

them successful human beings.’

Ann Landers, Journalist and advice columnist

Freedom of choice

We are learning that when children grow up without fear of medical procedures they are more likely to have genuine freedom of choice and a sense of trust when they access health services as adults. Whether it is for a simple travel vaccination, to donate blood, complex fertility treatment or receive a liver transplant, they can do it.

Do you remember the definition of an emotionally successful procedure? It is no fear of subsequent procedures.

People who have positive medical experiences as children grow up without becoming one of the statistics – those who avoid their own healthcare or suffer from needle phobia. They develop trust in themselves and the system, independence and an ability to navigate the complex world of medicine. You have shown them the way, by staying calm and being brave for your children.

This book is not about advocating particular healthcare services, but about giving your children a chance to choose for themselves when they grow up, and not be restricted because of development of phobias or a history of trauma.

Choo Choo Trains and Lots of Fun

You met Hamish in the first chapter. He has grown up without emotional scars from hundreds of invasive medical procedures.

For Hamish’s first treatment, he slept in my arms. Before he had his port, we would take in his bag of musical instruments and sing songs or watch TV as he sat on my lap for treatment with a butterfly needle. We watched the red train leave the station, daddy’s train chuff in the Factor and the speedy train finish it off.

(The ‘trains’ referred to the different syringes that Hamish would have connected up to the butterfly needle that had been inserted into his vein. Blood was taken off, Factor VIII injected, followed by saline to flush through the Factor.)

Hamish has never been distressed in hospital – he loves the ambulatory care area where he occasionally goes for treatment or learns to self-infuse. Staff comment on how relaxed he seems if he needs to have blood taken or some other procedure.

Hamish had had pain in his ankle for some time and needed an MRI to determine if there was a problem. We arrived for our MRI appointment almost precisely


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on time. Hamish was a little disappointed, as he had been hoping to play in the waiting area. However, he was happy to go through the magic door and put his things in the locker.

He asked if he could take in Red Dog because Red Dog had no metal and was looking forward to the MRI. Given a choice of DVDs, he decided to watch The Simpsons during his MRI. He hopped up on the bed, lay happily whilst his ankle was secured and, although happy to have me in the room, did not need me to hold his hand or talk to him. He did however have to be asked not to laugh quite so much at The Simpsons because it was causing him to move.

Hamish’s mother, Liz

Resilience

Positive early experiences are built into the foundations of brain development during the first three years, contributing to an ability to recover from stress, which is the hallmark of resilience. They are a step towards your child being able to function independently and confidently in the medical setting in the future.

Li, the premature baby with trachea-oesophageal fistula, regularly goes to hospital for check-ups, and minor medical and surgical procedures.

As Li got older, I talked to him about what was happening in a matter of fact, relaxed manner. Sometimes he would be distracted by watching the TV and he was also quite happy to watch everything that was going on around him, and he never found it a distressing experience.

Li’s mother, Kim

Resilient children cope with stress and are able to return to a baseline of calm in between the events, because they have been shown how to tolerate pain as well as pleasure, and soothe themselves. Children become very skilled at coping with medical procedures. They remain relaxed during them and are able to read or play or listen to music, or watch them − whatever works for them.

An ability to know what we don’t have to put up with is also a feature of resilience. It is important to have reliable survival systems that are flexible and let us know when enough is enough, when it’s time to stop and do something different and when to allow the team to go about their business without interruption.

Transition to driver

Over time, your child will learn to become the driver and actively participate in his or her own procedures and medical treatment. Get the message across that this is something he or she can do, from the very beginning, through positive experience, modelling and coaching.


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Coach your child through the challenges, as well as sharing in their joys. The principles are the same. All form the character of normal, everyday parenting: grazed knees, medical procedures, meltdowns over homework. At the end of the day it is not about remembering dot points; it is about relationships, connecting and teamwork. Use the language of possibility. Break the cycle of despair. Check for negative thought patterns. Be enthusiastic and creative. Allow new ways of coping to emerge and encourage change. Say to them, ‘Imagine how you will feel when you’ve done it’. Demonstrate your unending faith in their ability to develop resilience. Help them find their own answers and reach their own decisions.

Help children learn to turn off their defence systems when they are not needed:

Procedures → Normal→Sense of safety→Coping→Happy to go back again→Mastery

Replaces the old maladaptive cycle of:

Procedures→Threat→Fear→Distress→Pain→Aversion→Avoidance

Accept our fallibility

Children may experience pain, fear and distress at medical procedures but it is not because pain, fear and distress are inevitable; they are not. We have enough expertise and methods to prevent them and help children learn to turn off their defence mechanisms.

Our failures are inevitable. We are human and fallible. When children experience pain, fear and distress it is because we have not been able to work together to prevent it. To my mind, this is the way to continue to improve the experience for children at procedures. To look for ways that parents and healthcare professionals can truly share their own unique expertise with each other for the benefit of all.


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Changing the culture

Medicine is in transition. Atul Gawande, American surgeon and author of The Checklist Manifesto, says it is no longer about making healthcare professionals more expert at what they do, it is about making the parts ‘fit together well’ and helping the whole system function better.

Parents have a vital role in that transition from the old paradigm of non-inclusion to the new one of getting on the team. Let everyone know what works best for you and your child at medical procedures. It is by being strong and speaking up that you help the group get the best results: a truly successful procedure in every sense.

At a glance

Children who grow up without fear of medical procedures are blessed with freedom of choice about healthcare.

Early positive experiences create resilience and an ability to know when it’s time to do something different.

When it’s the right time, your child will be able to take herself through medical procedures with a sense of mastery.

She can do this because you have been on the team and let everyone know what works best for her, until she can do it for herself.

Truly successful medical procedures for every child are a measure of a whole system functioning well.

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Glossary

GLOSSARY

Anxiety – Persistent, nervous worry felt in the body and mind. Anticipatory anxiety is experienced before a procedure.

Bleeding disorder – The blood cannot properly develop a clot, causing an increased chance of bleeding.

Bone marrow aspirate – Removal of liquid tissue from inside the centre of the bone where new blood cells are formed.

Butterfly needle – A short needle that has plastic tabs on either side to help manipulate it during insertion. It is attached to flexible transparent tubing, which is connected to a syringe to take blood or inject medicine.

Cleft palate – A split in the roof of the mouth that some people are born with.

Colostomy – A surgical operation in which the colon is shortened to remove a damaged part and the cut end diverted to an opening (stoma) in the abdominal wall.

Cystic fibrosis – A hereditary condition affecting certain glands, leading to blockages in the pancreatic ducts, intestines and bronchi causing recurrent respiratory infections.

Emotional regulation – The ability to cope with emotions and feeling states and to acknowledge, express, tolerate and deeply listen to them without being overwhelmed.

Enema – A method of removing large bowel contents by gently pumping warm water or drugs into the rectum via the anus.

Factor VIII – One of the blood clotting proteins.


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Heel or finger prick – A puncture made in a heel or fingertip with a handheld device for collection of a small sample of blood.

Induction – The stage when drugs are given at the beginning of a general anaesthetic.

Intravenous – Within the blood vessel called a vein.

Intravenous drip (IV or drip) – The continuous, slow introduction of a fluid into a vein.

Nuclear medicine – Uses small amounts of radioactive substances to diagnose and treat disease. They provide precise pictures about the area of the body being imaged.

Phobia – Persistent and excessive fear of object that leads to avoidance, e.g. needles, blood.

Port or Port-a-Cath – A small medical appliance that is installed beneath the skin and connects to a vein. It is used in children who need frequent injections of medicine and blood tests.

Positive stress – Moderate, short-lived stress responses such as brief increases in heart rate or mild changes in the body’s stress hormone levels.

Radiotherapy – The use of targeted radiation to destroy cancer cells.

Self-infuse – Deliver treatment to oneself intravenously.

Stress regulation – The ability to cope with novel and/or potentially threatening situations, such as an unfamiliar environment or physical danger.

Glossary

Tolerable stress – Stress responses that could become toxic but generally occur for briefer periods and in time for the brain to recover and reverse potentially harmful effects.

Toxic stress – Strong, frequent or prolonged activation of the body’s stress management system that has harmful effects on the brain architecture.

Tourniquet – A tight band that goes around a limb and compresses the blood vessels.

Trauma (psychological) – An emotional wound or shock that causes substantial damage to the development of a child or person.

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Appendix

APPENDIX

Where to find professional help

Hospital departments

If your child is a hospital patient, find out what resources are available within the organisation. The structure will vary, but the healthcare professionals who support a child with fear, anxiety, pain or stress related to procedures and hospital care are usually located in Allied Health and Psychology. They will also be able to prepare you and your child for forthcoming procedures and prevent problems.

Play specialists

Hospital play specialists are healthcare professionals who specialise in child development and work with children and families to normalise the hospital environment as much as possible and promote coping and mastery. They are also known as educational play therapists and child life specialists, depending on when and where they are trained. You can find more information on the Australian Association of Hospital Play Specialists website at www.aahps.org.au.

They usually work in the hospital setting, though some do work in the community.

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Appendix

Pre-admission clinics

Find out if your hospital has a pre-admission clinic and request a referral if there are clues that your child is anxious and worried about having an operation, or if you have concerns yourself about how to help her.

Music therapists

A music therapist is professionally trained in the use and application of music in many settings and for a variety of purposes. With children, music therapy can be used to calm, relax, motivate, energise, reduce anxiety and provide familiar musical experiences. Music therapists are registered with the Australian Music Therapy Association, see www.austmta.org.au.

Psychologists

Your general practitioner or specialist can refer you or your child to a psychologist for assessment and treatment arising from negative experiences with medical procedures, including fear and phobias. You can also refer yourself but then you won’t be eligible for Medicare rebate.

One way to find a practitioner who specialises in what you are looking for is to go through the Australian Psychological Society referral service, which you can access yourself. Go to www.psychology.org.au and click on community information to find a practitioner in your area.

Make sure you let them know you want to see someone who specialises in the particular field you want, for example:

a child with anxiety about medical tests and hospital

an adult with needle phobia.

Community workshops

If you would like training in running workshops for parents, register your interest at www.EverybodyStayCalm.com.

You can find more resources and useful links on this website.

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Bibliography

BIBLIOGRAPHY

Biddulph, Steve (2006), Raising Babies: Why Your Love Is Best, HarperThorsons, UK.

Blount RL, Seri LG, Benoit MA et al. (2003), Effective Coping: Essential but Ignored in Paediatric Pain Assessment, The Suffering Child, October (4).

Brett, Doris (1987), Annie Stories: A Special Kind of Storytelling, Workman Publishing, New York.

Butler, David S & Moseley, G Lorimer (2003), Explain Pain, Noigroup Publications, Adelaide.

Courtenay, Bryce (2006), April Fool’s Day, Penguin Group, Camberwell, Vic.

Fraiberg, Selma (1959), The Magic Years: Understanding and Handling the Problems of Early Childhood, Scribner, New York.

Gawande, Atul (2010), The Checklist Manifesto: How to Get Things Right, Picador, New York.

Gibson EJ & Walk RD (1960), The Visual Cliff, Scientific American, 202, 67-71.

Housden, Maria (2002), Hannah’s Gift: Lessons from a Life Fully Lived, HarperCollins, UK.

Kuttner, Leora (1985), No Fears No Tears, VHS, Canadian Cancer Society.


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About the Author

Kuttner, Leora (1996), A Child in Pain: How to Help, What to Do, Hartley& Marks, USA.

Levine, Peter A (2010), In An Unspoken Voice: How the Body Releases Trauma and Restores Goodness, North Atlantic Books, Berkeley, California.

Mazari, Najaf & Hillman, Robert (2008), The Rugmaker of Mazar-e-Sharif / A Memoir of Najaf Mazari written with Robert Hillman, Insight Publications, Elsternwick, Vic.

Porges, SW (2004), Neuroception: A Subconscious System for Detecting Threats and Safety, Zero to Three, May, 19-24.

Rosenberg, Marshall B (2003), Nonviolent Communication: A Language of Life, PuddleDancer Press, Ca.

Siegel, Daniel J & Hartzell, Mary (2004), Parenting from the Inside Out: How a Deeper Self-Understanding Can Help you Raise Children Who Thrive, Tarcher/Penguin, New York.

Sunderland, Margot (2007), What Every Parent Needs To Know: The Remarkable Effects of Love, Nurture and Play on Your Child’s Development, Dorling Kindersley, London.

Further references are available on the website www.EverybodyStayCalm.com.

ABOUT THE AUTHOR

Dr Angela Mackenzie is a paediatrician with over 25 years experience, and a highly sought after pain management specialist, hypnotherapist, speaker and international author.

Her expertise and passion is helping young children learn to cope with medical procedures and

the demands of modern healthcare, by educating their parents, caregivers and health professionals.

Born in London, Angela travelled the world and worked various jobs before taking up medical studies. In her final year of medical school while working in Papua New Guinea (PNG), she met and married an Australian doctor and lived and worked there for several years.

She later came to Australia to train in her area of speciality − paediatrics − and became a Fellow of the Royal Australian College of Physicians. Her extensive work and research during this time on oral rehydration in a developed country was widely recognised by medical professionals and in medical journals, and heralded a change from intravenous fluids to oral fluids for the treatment of dehydration associated with gastroenteritis.

During this time, Angela formally trained in hypnosis so she could teach children how to harness the power of their mind to improve their health, integrating this practice into her work

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About the Cartoonist

at Melbourne’s Royal Children’s Hospital (RCH) from 1999 to 2008 in Oncology, Adolescent Health and Pain Management.

Angela chaired the working party of the Royal Australasian College of Physicians that published Guideline Statements on procedure-related pain management in neonates, children and adolescents in 2006. She was a founding member of the RCH Steering Committee on procedural pain management and chaired the first Education Sub-committee. She also ran world-first pain management workshops for parents of very young children with severe bleeding disorders to help them cope with the numerous medical procedures that are part of their lives.

After many years at RCH, Angela left to start her private practice offering mind body medicine, clinical hypnosis, reverse therapy for chronic fatigue, and more.

Angela’s decades of work with ill children makes her a world-leading expert on helping infants, children and adolescents to minimise suffering and deal with the trauma involved in undergoing medical procedures and living with long-term illness. She has presented at numerous conferences and seminars nationally and internationally.

Angela has travelled extensively for both work and pleasure, and has lived and worked in several countries including England, PNG and Australia.

Angela lives in Melbourne, Australia, and has two daughters and a son.

ABOUT THE CARTOONIST

Richard Mitchell's cartoons have appeared in The Age newspaper and many national and international publications. He has illustrated award-winning children's educational books and has even designed his own cartoon puzzle called Pundit, which has been published in Australia and the UK. Richard's daughter Matilda had her first operation for cleft palate at just six months of age. Later diagnosed with autism, she has ongoing medical issues that make hospital visits a routine part of life for the family. Richard understands the challenges that are faced by parents having to negotiate the world of medical procedures and is very pleased to contribute to this important book.

praise for the author · 2020. 5. 12. · they are talented, creative writers and i wish them every...

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