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Resources - Pain & Chronic Illness

Kaitlin Atkinson Family Resource Library

Children's Hospital of Eastern Ontario
401 Smyth Rd., Ottawa, ON K1H 8L1                                          Printer Friendly Version
613-738-3942
library@cheo.on.ca
Follow us @CHEOfrl

Information for Parents, Teens and Kids

Websites

YouTube

Apps

Local Contacts

General Information & Resources for Parents, Teens and Kids

Amanda's rainbow: young children's pain ages 2-10
/ Hillstrom, Beverly -- Port Moody, BC: Hillstrom Pub, 2002.
Amanda's Rainbow is an easy to use assessment tool that allows children to communicate their levels of pain to adults. The unique thing about this assessment tool is that it was created by a child for children.
FAM RJ 365 .H54

Be the boss of your pain: self-care for kids / Culbert, Timothy -- Minneapolis: Free Spirit Pub, 2007.
This book speaks to kids ages 8 and up with this message: Your body, mind, and spirit - working together - have amazing abilities to help you control how your body feels, even when you have pain.
FAM RJ 365 .C85 2007

A child in pain: how to help, what to do / Kuttner, Leora -- Hartley & Marks, 1996.
The many methods and medications discussed in this book will enable you and your child to cope with both minor and more serious pain from injuries or childhood and teenage diseases.
FAM RJ 365 .K87 1996

Children with complex and continuing health needs: the experiences of children, families and care staff / Hewitt-Taylor, Jaqui -- London: Jessica Kingsley Publishers, 2008.
Focusing on the real life experiences of children and their families, this book provides valuable insight into living with complex and continuing health needs. The author highlights the importance of seeing each child as an individual, with the same rights and needs as any other person, rather than defining them by their health condition. The book includes case studies to illustrate the experiences of children, parents, siblings and extended families, as well as professionals in health and social care.
FAM RJ 380 .H49 2008

Conquering your child's chronic pain: a pediatrician's guide to reclaiming a normal childhood / Zeltzer, Lonnie K. -- New York: HarperCollins, 2005.
Provides help for child or adolescent to regain power over pain and restore function and well-being. Covers many topics including reactivating the body's natural pain control, effective medications, and relaxation techniques.
FAM RJ 365.Z45 2005

Complex pain: what to do when pain won't go away [DVD] / BC Children's Hospital Foundation -- Vancouver: BC Children's Hospital Foundation, 2008. 
In this video, you will meet three teens who have become experts in mastering pain.  They will explain the impact that complex pain can have on families and on quality of life.
FAM RJ 365 .C66 2003 DVD

Complex regional pain syndrome (CRPS) explained : for teenagers by teenagers : info that clicks / Lauder, G.R. and Massey, Roslyn -- Bloomington,Indiana: Xlibris Corporation, 2010.
This book provides clear information for teenagers who develop Complex Regional Pain Syndrome (CRPS). It can be used as a tool to aid the early recognition of CRPS and implement the necessary team approach to management. Medical terms have been explained in a way that can be easily understood.
FAM RJ 365 .G38 2010

La douleur de l'enfant / Gauvain-Piquard, Annie -- Paris: Calmann-Lévy, 1993.
Cette livre parle de l’expérience d’Aurélie quand elle arrive à l’hôpital avec son bras cassé.      
FAM RJ 365 .G38 1993.

Easy for you to say: Q & As for teens living with chronic illness or disability / Kaufman, Miriam -- Toronto, ON: Key Porter, 1995.
Answers many questions teens may have about their chronic illness or disability.  Appropriate for Ages: 12-17 years
FAM RJ 380 .K38

Grrrouch! : pain is like a grouchy bear / Morgan, Cathryn and Beshara, Crystal -- Renfrew,Ontario: General Store Publishing House, 2011.
Told from a child's perspective, the tone of the story is calm and compassionate, yet whimsical too. The rhyming text is paired with vibrant illustrations by artist Crystal Beshara that are designed to echo emotions, to trigger discussion, and to emphasize how other children learn to cope with their pain. Appropriate for Ages: 6-10 years.
FAM RJ 365 .M67 2011

Hi, my name is Jack : a book for the healthy siblings of chronically ill children / Beall-Sullivan, Christina -- Park City,UT: Bopar Books, 2005.
Eight-year-old Jack tells what it is like to have a sister who is chronically ill.  Appropriate for ages 4-8 years.
FAM RJ 380 .B42 2005

How it feels to fight for your life / Krementz, Jill -- Boston: Little, Brown, 1989.
Fourteen children tell how they battle pain, uncertainty, and the changes brought about in their lives by serious illness such as cancer, severe burns, asthma, and kidney failure.
FAM RJ 380 .K74

Managing your child's chronic pain / Palermo, Tonya M.; Law, Emily F. -- Oxford, New York: Oxford University Press, 2015.
Managing Your Child's Chronic Pain is an invaluable resource for parents who wish to learn how to help their children and families cope with persisting pain using cutting-edge, scientifically proven treatment tools and techniques. The easy-to-implement strategies in this book provides parents with practical instructions for pain management that will enable children to return to school, participate in sports and other activities, and pursue healthy and active social lives.
FAM RJ 365 .P27 2013

Mon enfant a une maladie chronique: stratégies, ressources, moyens / Chartré, Marie-Eve; Gagné, Johanne. -- Montréal: Éditions du CHU Sainte-Justine, 2014.
Dès l'annonce du diagnostic, la maladie chronique d'un enfant devient « l'affaire » de toute la famille. Ce livre permet aux parents de mieux comprendre les étapes de ce cheminement émotionnel et social pour l'enfant malade, la fratrie, la famille, le couple comme pour eux-mêmes en tant qu'individus et d'accompagner chacun en puisant à la fois dans les ressources personnelles et extérieures dont ils peuvent bénéficier. Il met aussi de l'avant l'étroite collaboration qui doit prévaloir entre l'équipe soignante, la travailleuse sociale et la famille afin de rendre ce parcours de vie le plus confortable possible.
FAM RJ 380 .G33 2014

The pain manual: principles and issues in cancer pain management
/ Librach, S. Lawrence --Montreal: Pegasus Healthcare International, 1997.
FAM RC 263 .L52

Parenting children with health issues: essential tools, tips, and tactics for raising kids with chronic illness, medical conditions and special healthcare needs / Cline, Foster -- Golden, CO: Love & Logic Press, 2007.
Offers parents of children with chronic health issues practical strategies and suggestions to help them cope with their child's condition and the constant physical and emotional challenges they face.
FAM RJ 380 .C62 2007

Pour en savoir plus sur la douleur de l'enfant / Galland, Francoise; Annequin, Daniel. -- Paris: Sparadrap, 2003.
Ce film de formation permet de découvrir ou d'introduire les notions essentielles sur la douleur de l'enfant. Les points forts du film : un film accessible a` tous, ni trop technique, ni trop médical ; la vision d'une association non spécialiste du traitement de la douleur qui privilégie un regard global sur les besoins de l'enfant douloureux et de ses parents, qui évite de réduire le propos a` un ou deux aspects techniques mais valorise l'indispensable complémentarité´ des moyens.
FAM RJ 365 .G25 2003 DVD

Relieve your child's chronic pain: a doctor's program to easing headaches, abdominal pain, fibromyalgia, juvenile rheumatoid arthritis, and more / Krane, Elliot J -- New York: Simon & Schuster, 2005.
This book will help the parent recognize, measure, and evaluate their child's pain properly; learn about the many alternative pain-management approaches that can be used at home and more.
FAM RJ 365 .K72 2005

Sick all the time: kids with chronic illness / Chastain, Zachary -- Broomall, PA: Mason Crest Publishers, 2011.
Kids just want to be kids. They want to spend time with their friends and enjoy life. When a kid has a chronic illness, though, it can be a lot more difficult to do those things.
FAM RJ 380 .C43 2010 

Soothing your child's pain: from teething and tummy aches to acute illnesses and injuries: how to understand the causes and ease the hurt / Gorfinkle, Kenneth -- Chicago, IL: Contemporary, 1998.
This book contains practical information about coping with the everyday experience of pain in children.
FAM RJ 365 .G67

Taking the lead : dancing with chronic illness / Giroux, Louise -- Kelowna, BC: Northstone Pub Inc., 1998.
This is an empowering story of 3 people who live with chronic illness. The author wants to empower those who live with chronic illness and guarantee that they will never become their disease.
FAM RJ 380 .G57

When your child hurts: effective strategies to increase comfort, reduce stress, and break the cycle of chronic pain / Coakley, Rachael. -- New Haven: Yale University Press, 2016.
Parents of a child in pain want nothing more than to offer immediate comfort. But a child with chronic or recurring pain requires much more. His or her parents need skills and strategies not only for increasing comfort but also for helping their child deal with an array of pain-related challenges, such as school disruption, sleep disturbance, and difficulties with peers. Written by an expert in pediatric pain management, this book is offers in-the-moment strategies for managing a child's pain along with expert advice for fostering long-term comfort.
FAM RJ 365 .C62 2016

When your child is technology assisted: a home care guide for families / Kahn, Paul --Boston: New England Medical Center, 1997.
This guide is for parents of children with disabilities who require the help of a machine or device for some life-sustaining activity such as breathing or eating. It includes chapters on preparing for the child's return home including parent training, setting up the child's room, safety precautions, changing the physical structure of the home, marital adjustment to home care and helping siblings, respectively.
FAM RJ 380 .K33

Young people and chronic illness: true stories, help, and hope / Huegel, Kelly -- Minneapolis, MN: Free Spirit Pub., 1998.
This book is a source of strength, inspiration, and sound advice for young people diagnosed with chronic illnesses. It helps them learn to cope, know they're not alone, and make the most of the wonderful opportunities that lie ahead.
FAM RJ 380 .H84

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Web Sites

Acute Pain Service - CHEO

Managing Your Chronic Pain - CHEO / Gestion de votre douleur chronique - CHEO

Pain - SickKids / Douleur - SickKids

Association québécoise de la douleur chronique

Caring for a Seriously Ill Child – Kids Health – For Kids, Teens and Parents from the Nemours Foundation


Living with a Chronic Illness or Disability – Healthy Children from the American Academy of Pediatrics

La douleur de l'enfant: la reconnaître, l'évaluer, la traiter – Pédiadol

Chronic Pain Association of Canada

PainBytes – Pain Management Network

Chronic Pain Australia

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YouTube

CHEO’s Chronic Pain Team – CHEOvideos

What is Chronic Pain? – CHEOvideos

Exploring Pain Management Strategies for Infants – CHEOvideos

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Apps

Catch My Pain
● Sanovation AG
● English, French, Dutch, German, Spanish / Français, Allemand, Anglais, Espagnol, Néerlandais
● Free with in-app purchases / gratuit mais offre achats in-app
● Last updated March 2016 / Dernière mise à jour 2016 mars
● Google Play: Keep a medical health record, track your pain, diagnosis, symptoms and medication and share it with your doctor.Medical experts recommend you keep a pain diary to be able to treat pain effectively. The award winning "Catch My Pain" app allows you to visualize and monitor your pain by creating detailed drawings and by tracking other relevant information. The diary will help you to explain your pain to any medical practitioner. In addition, you can exchange insights with similar patients. / Afin d'être en mesure de traiter efficacement la douleur, les experts médicaux recommandent de tenir un journal de la douleur.Le journal primé "Catch My Pain" vous permettez de créer des dessins détaillés et en couleurs de vos douleurs afin d'exprimer la localisation et l'intensité de celles-ci, suivre l'évolution de votre douleur sur un graphique établi à partir de vos dessins de douleur et beaucoup plus.
● Available from / Disponible via Google Play & iTunes

Pain Rating Scale
● From ETZ
● English
● Free
● Last updated March 20115
● From Google Play: This application provides some of the most used, validated and widely accepted pain assessment and rating scales. Featured are
self-reporting and observational scales for pain assessment in infant, children, adults, demented persons, ICU patients and persons experiencing chronic or low-back pain.  Each scale is equipped with short description, instructions for use, scoring methodology, interpretation of results and references.
● Available from Google Play

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Local Contacts

Chronic Pain– CHEO / La douleur chronique
By physician’s referral / par les médecins renvoi

Association québécoise de la douleur chronique
2030, boul. Pie-IX, bureau 403
Montréal (Québec) H1V 2C8
514-355-4198
855-230-4198
Fax: 514-355-4159
aqdc@douleurchronique.org

This guide provides medical material for information purposes only and is not intended to replace the advice of your physician. The information may not always apply to your individual situation.

The guide represents material available in the Family Resource Library collection at CHEO. It is not intended to be an exhaustive list. Your local public library may also be able to provide valuable information.

If you require materials in alternative formats, please contact the library at 613-737-7600 ext. 2157 or at library@cheo.on.ca.

Last Updated: May 2016
Links Tested: May 2016

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