Information and resources for parents and professionals on supporting children in healthcare:
Empower a child today
“When I approach a child, he inspires in me two sentiments — tenderness for what he is and respect for what he may become”
Louis Pasteur (French chemist and microbiologist)
Asthma
Resources for children
The Centers for Disease Control and Prevention (CDC) has resources to teach children about asthma
Autism
Autism Library
For resources and information on autism, visit the autism library at Autism South Africa
Medical Procedures
Hospitalisation and medical procedures can be very traumatic for children with Autism. You can download the Blood Draw Tool Kit from the Autism Speaks website to help children with autism cope with blood draws and other medical procedures.
Blood Disorders
Explaining Blood Disorders to Children
How to make a blood mix:
Mix different candies (as shown in picture) with glycerine. Seal tightly in a zip-lock bag or plastic bottle. Remember THIS IS NOT A TOY and children should be supervised at all times.
You can download the PEP-booklet on blood disorders to help you explain the function of the different blood cells to a child.
Burns
Resources for Parents and Children
The Phoenix Society has information and resources to assist families after a child’s burn injury
Cancer
Free App for children with cancer
The Pain Squad™ App was developed by the iOUCH research team at The Hospital for Sick Children. Help kids 8 – 18 years to track their cancer related pain – Read more
Re-Mission Game
An online game for teens to help them understand and cope with their cancer diagnosis
Imaginary Friends
Go to the Imaginary Friend Society for a series of animated short films where imaginary friends explain a wide range of complicated cancer topics in a way that kids can understand. The cast of characters are inspired by the imaginations of kids themselves
Book on Bone Marrow Transplant
You can download the book Me and My Marrow: A Kid’s Guide to Bone Marrow Transplants from the Bridges4Kids website – check out their website, they have a lot of resources for children and families on all aspects of life
Information for Teens
Macmillan Cancer Support has information for teens and young adults on cancer
Handbook for Parents
You can download the book: Making Cancer Less Painful from the Centre for Pediatric Pain Research website. Check out their website – they have many resources on childhood pain in general
Radiotherapy
Click here to watch a video on YouTube explaining radiotherapy to children
Covid-19
Resources for children and families on COVID-19
The Meg Foundation has many resources to help children and their families during these difficult times, including information and support on how to create comfort and prevent pain during nasal swabs
JellyBeanz compiled a selection of online resources to help parents, kids and child mental health workers navigate the COVID19 pandemic
Beautifully illustrated books to help children understand Coronavirus are available from the eHospice website
Go to the Nosy Crow website for a free illustrated book, explaining the Coronavirus to children
The St. Jude Children’s Research Hospital has resources on how to cope with COVID-19, including a colouring book, for paediatric cancer patients, survivors, and their families.
Long Covid
Long Covid is also affecting children. Long Covid Kids supports children and young people living with Long Covid and related illnesses. The also help children to Manage Their Energy With Pacing Penguins
Diabetes
Empowering youth with diabetes
Diabetes South Africa has a youth outreach programme with events, camps, support and tools for parents, children and youth with Type 1 Diabetes.
Hospitalisation
Medical Trauma
Visit the National Child Traumatic Stress Network for information on the psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.
Support for parents with a baby in NICU
If you are a parent with a baby in Neonatal ICU, you can download the book Comforting Your Baby In Intensive Care, by Professor Linda S. Franck. This booklet is written for parents to help them learn about infant pain and the important role that parents can play.
Medical Procedures
Prepare children for all healthcare experiences
It is important to prepare children for all medical procedures and healthcare experiences to ensure that they don’t have any misconceptions and that they know what is going to happen and why. This PEP-video will explain to you how to do that
Comfort Positioning
Comfort positioning can help to ease anxiety and to make a child feel safe and more in control during medical procedures. This video from the University of Iowa Health Care gives visual examples to explain this technique.
Distraction
Distracting children during medical procedures can significantly reduce anxiety, pain and discomfort. Learn how to be a distraction coach for children to help them through medical procedures with this video from the University of Iowa Children’s Hospital
Reducing Pain during Procedures
The Be Sweet To Babies initiative from the CHEO Foundation in Ontario, has a number of videos illustrating how to reduce an infant’s pain during newborn blood tests by using breastfeeding; skin to skin care (also known as kangaroo care); as well as giving small amounts of sugar water (sucrose or glucose)
Meet superhero SuperMeg
The Meg Foundation has a superhero called SuperMeg that will guide children to create their very own plan to cope better with medical procedures
Pain
Remember – your mood can influence the neurotransmitters responsible for sending pain impulses to the brain. Reducing anxiety in children is, therefore, a critical first step to reduce their pain experience. You are welcome to contact us for more information on this topic.
You can watch the series: PEP-Talks on Pain in Children on our YouTube Channel
Downloads:
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You can download the book: How to become a PI: Private Investigator into Childhood Pain, as well as a PEP-Booklet on pain, from the PEP-booklets page
Other Websites
PainSA is a chapter of the International Association for the Study of Pain (IASP), with a mission to improve all aspects of pain management in Southern Africa. PainSA also has a Paediatric Special Interest Group, focusing on the prevention and management of pain in children. You can contact them here.
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Buzzy – Drug-free pain relief
For more information on this device and to order you can visit buzzysa.co.za
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Free Apps for children
The Hospital for Sick Children, also known as SickKids, has developed a mobile app called Pain Squad. Developed by researchers at SickKids, this is an evidence-based pain diary that plays like a game and is recommended for children 8 to 18 years of age with cancer.
1Step2Life developed an app for teens and young adults living with chronic pain and their parents and caregivers.
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A Resource Library
ChildKind International is dedicated to pediatric pain management and has a library of resources that is relevant to both health practitioners and their communities.
Pain Toolbox for children living with a disability
The Holland Bloorview Kids Rehabilitation Hospital in Canada supports children and youth living with a disability or medical complexity. You can download the Chronic Pain Assessment Toolbox for Children with Disabilities – a compendium of resources based upon high-quality research evidence and intended to support the assessment of chronic pain in pediatric disability clinical practice.
Video explaining Migraine
You can watch this video: Migraine: How it works and how to get it under control on YouTube
Video explaining Chronic Pain
You can watch this video: Pain processing in the brain: What changes with chronic pain on YouTube
Another video for children with chronic pain
You can watch a video on YouTube: “Understanding pain and what’s to be done about it … in 10 minutes”. This video and many other resources (available in English and German) has been developed by the German Paediatric Pain Centre website,
It doesn’t have to hurt
The #itdoesnthavetohurt initiative has many resources on how to manage a child’s pain
Reducing Pain during Procedures
The Be Sweet To Babies initiative from the CHEO Foundation in Ontario has a number of videos illustrating how to reduce an infant’s pain during newborn blood tests by using breastfeeding; skin-to-skin care (also known as kangaroo care); as well as giving small amounts of sugar water (sucrose or glucose)
CAPHC-KEN
The Canadian Association of Paediatric Health Centres (CAPHC) has a Knowledge Exchange Network (KEN) with Toolkits and Resources on paediatric pain management.
The Centre for Pediatric Pain Research
The Centre for Pediatric Pain Research in Canada is affiliated with Dalhousie University and is an international leader in children’s pain research. The website has many resources for families, as well as for Health Professionals, including a Pediatric Pain Mailing List where pain specialists can network across the globe.
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PAEDIATRIC PAIN CLINICS IN SOUTH AFRICA
If you are aware of any other clinics, please let us know.
- Western Cape: Red Cross War Memorial Children’s Hospital
- KwaZulu-Natal: PMB Anaesthesia, Critical Care and Pain Management (Adults and Children) – Contact Sr Thomas for an appointment
- Limpopo: Limpopo Pain Clinic (Adults and Children) – Contact Dr. Michelle King for an appointment
Rights of children in healtcare
Different Organisations developed charters to protect the Rights of Children in Healthcare. Click on the links below to read more about these charters.
The International Children’s Palliative Care Network (ICPCN)
The ICPCN Charter sets out the rights of all children living with life limiting or life threatening conditions and their families – available in all of the South African official languages
The European Association for Children in Hospital (EACH)
The Child Friendly Healthcare Initiative (CFHI)
Click here to learn more about the CFHI. Child Friendly Healthcare is defined by promoting 12 Standards that encompass all aspects of health care provision for children.
This initiative is based on the UN Convention on the Rights of a Child that forms the foundation for the development and implementation of the rights of children in healthcare
Special needs
Special Kids
Special Kids offer support, information and resources to professionals and parents of children with special needs, and strive to connect, encourage and uplift families who are faced with a unique set of challenges
Pain Toolbox
The Holland Bloorview Kids Rehabilitation Hospital in Canada supports children and youth living with a disability or medical complexity. You can download the Chronic Pain Assessment Toolbox for Children with Disabilities – a compendium of resources based upon high quality research evidence and intended to support the assessment of chronic pain in pediatric disability clinical practice.
Spiritual care
Children should receive support when faced with the adversities of healthcare interventions, including spiritual support. They often have questions and concerns regarding life and death, and it is common for a child to harbour feelings of guilt when in hospital or diagnosed with a serious or life-threatening illness. Discussions with a child should include religion and spirituality, and the spiritual care of the child in hospital should focus on the child, be a source of hope, communicate love, address guilt, as well as include religious rituals that the child is familiar with. However, information on this topic is limited. Any information or discussion on this topic is welcome – please contact me if you can add to this discussion.
Spiritual Care for Children
The PatchSA website has resources with regards to the spiritual support of children with a life-limiting or life-threatening condition
RampUp
For more information on the inclusion of children with disabilities in the church, go to the RampUP website
HospiVision
HospiVision is a local non-profit organisation that provides spiritual, emotional, social, and physical care to patients in hospital
Trauma & disasters
The National Child Traumatic Stress Network (NCTSN)
Visit the NCTSN website for resources to help traumatized children and adolescents exposed to traumatic events