Pain Toolkit for Kids

Pain is a serious medical concern in America.  For those with a bleeding disorder, pain as a result of a bleeding episode can result in acute and/or chronic pain issues.  This toolkit provides resources about many pain related issues in the form of:

• presentations (recorded webinars, videos)
• downloads (articles, documents)
• links to other resources

If you or a loved one need help, the Substance Abuse and Mental Health Administration’s (SAMHSA) National Helpline  is a confidential, free, 24-hour-a-day, 365-day-a-year, information service, in English and Spanish, for individuals and family members facing mental health and/or substance use disorders.

 Note: Inclusion of resources by a third party site or organization do not constitute an endorsement by HFA, it’s Board, volunteers or staff.

PRESENTATIONS
	HFA Families Webinar – Tackling Pain & Anxiety: Parents as Coaches for Coping: This Families webinar provides techniques for parents to help their children cope with pain and anxiety, and how to empower them to voice their concerns. Parents will also learn tried and true tips to help their children manage pain and how to make infusions and other procedures less stressful for the entire family. Watch the webinar Accompanying Handout – Comfort Techniques for Pokes
	HFA Webinar – Ouch! Does it Always Have to Hurt: In this HFA webinar, an HTC nurse and pharmacist help patients and parents learn to recognize and treat pain appropriately and give an overview of drugs used in bleeding disorders to treat pain. They share case studies from both a pediatric and adult to discuss what pain inventions are available and appropriate. They also discuss dealing with some of the stigma related to using pain medications.

DOWNLOADS
	HFA Mom’s Blog, “Infusing Love”: This is a blog of personal opinions and a representation of individual experiences. Poke, Pain & Pressure: In this Infusing Love blog, a mom of son with hemophilia shares the struggles of self-infusion for her child. A or B (Arthritis or Bleed?): In this Infusing Love blog, a mom of a son with hemophilia explains the challenges of determining bleed pain versus arthritic pain.
	Children’s Hospital and Clinics of Minnesota, “Dr. Friedrichsdorf’s Top 10 Apps for Pain Management: A list of ten apps suitable for children to use for distraction and pain management.
	Child Life Council – Comfort Tips & Tricks: This document contain tips for parents on how to distract children from pain during procedures and helpful language to use with a child.
	The ILC Foundation:  The ILF Foundation exists to inspire hope and contribute to the health and well-being of children and families living with hereditary and complex chronic pain diseases by providing a care model of health promotion education and knowledge sharing partnerships through a family centered, peer-to-peer support network and program. ILC Foundation is based in Canada.  The following are resources from their website: Pain: How to Talk to Kids About Their Pain (pdf) Pain At Home: Taking Care of Your Child (pdf)  Pain Relief: Comfort Kit (pdf)
	University of Michigan Health System – Pain and Your Child or Teen:  This article offers a comprehensive look at pain in children and teens, as well as links to other resources.
	Cincinnati Children’s Hospital Medical Center – Article on Pain in Spanish:  This article is a comprehensive look at pain in children written in Spanish.

Learning Central

HFA’s Learning Central: One of the ways you can learn about bleeding disorders is to educate yourself with medically-vetted, accurate information, like the educational information found in HFA’s Learning Central e-learning platform. You may learn something new or brush up on facts or gain the information you need to help educate others about bleeding disorders.