Family Medical Coping Initiative (FMCI)

Included in this presentation are the following topics:

• Parents/caregivers can help reduce anxiety
• Honest explanations and communication
• The importance of preparation
• Specific strategies to use in preparation to improve coping
• Resources and pain-control advocacy 
• When is “scared of needles” considered “needle phobia”?
• When to seek additional support

Resources referred to in the presentation:

My Hospital Story: Boston Children’s Hospital has produced many short stories, written in first person, with photos that take the patient through the locations and steps of many procedures. The stories were written and developed by the Boston Children’s Hospital Autism Spectrum Center and Child Life Services Program. Visit this webpage for more: https://www.childrenshospital.org/patient-resources/your-visit/my-hospital-story.

Brochures:

• Helping Your Child Get Ready for Vaccinations and Other Pokes: Reducing Anxiety (in English)
• Helping Your Child Get Ready for Vaccinations and Other Pokes: Reducing Anxiety (in Spanish)
• Helping Your Child Get Ready for Vaccinations and Other Pokes: Reducing Anxiety (in Arabic)

Worksheets, charts, and preparation materials:

• Visit Planning Booklet — Penguin Poke Plan (best if printed on card stock and two-sided)

Additional resources from PBS Learning Media:

• Why Do I Need to Get a Shot: Daniel Tiger's Neighborhood
• It's Time for Daniel's Shot: Daniel Tiger's Neighborhood
• Lily Gets a Shot: Daniel Tiger's Neighborhood

Included in this presentation are the following topics:

• When illness or difference enters a child’s life
• Staring, questions, teasing, and bullying: what is the difference and why does it matter?
• Creating a healthy story about themselves
• Helping your child have a broader view of their place in the world
• Helping your child deal with social situations
• Staring — what your child can do?
• Typical questions from peers or others
• Helping your child prepare their answers
• What is the difference between teasing and bullying?
• When a parent needs to take action
• Helping your child cope with anxiety
• Encouraging your child to join with others
• Resources and books

Brochures:

• Helping Your Child Manage Staring, Questions, Teasing and Bullying About Their Medical Illness or Difference (in English)
• Helping Your Child Manage Staring, Questions, Teasing and Bullying About Their Medical Illness or Difference (in Spanish)
• Helping Your Child Manage Staring, Questions, Teasing and Bullying About Their Medical Illness or Difference (in Arabic)

Non-profit organizations: There are organizations that support families with various medical conditions. You can search your patient’s medical conditions for names of these organizations. For example:

• Children's Craniofacial Association
• Crohn’s & Colitis Foundation
• Epilepsy Foundation
• Center for Parent Information & Resources (serves parents of children with disabilities)

Books about being different:

• "Just Ask! Be Different, Be Brave, Be You," by Supreme Court Justice Sonia Sotomayor: This book is particularly appropriate for school age children. It specifically talks about the strengths of children who have diabetes, asthma, are blind or deaf, have dyslexia, autism, Tourette syndrome, ADHD, allergies, Down syndrome, stutter, or use a wheelchair. It also discusses how it is ok to be curious and to ask an adult about the differences of other people.
• "It is OK to be Different," by Sharon Purtill: This is a book that is appropriate to read to younger children (nursery school –first grade). It discusses many kinds of diversity including some medical differences. It emphasizes acceptance of others.

Look for books related to your child’s medical difference or ask the organizations above for suggestions.

Books about bullying situations:

• "Wonder," by RJ Palacio: This book was also made into a movie. It is about a boy named “Auggie” who has a facial difference and manages the reactions of his peers.
• "Chrysanthemum," by Kevin Henkes: Chrysanthemum is a young mouse who loves her unique name until she is teased about it by her classmates. Her main tormentors are three girls named Jo, Rita, and Victoria, who ridicule her for being named after a flower and point out that her name is so long it barely fits on a name tag.
• "Confessions of a Former Bully," by Trudy Ludwig: This book takes the perspective of a bully who is now rethinking her behavior and recognizing the toll it took on herself and others.

Additional resources:

• Boston Children’s Hospital’s Bullying and Cyberbullying Prevention and Advocacy Collaborative (BACPAC) Program

Included in this presentation are the following topics:

• The difference between adherence and compliance
• Coping with feelings about illness and life changes
• Building an alliance with the medical team 
• Overcoming barriers to:
  • Swallowing pills
  • Using needles at home
  • Applying creams
  • Restricting activity
  • Performing exercises
  • Meeting dietary and liquid requirements
• Books and Resources

A pill swallowing handbook, "Teaching Your Child to Swallow Pills: A Step-by-Step Guide," will be available soon.

Included in this presentation are the following topics:

• Why are children anxious about medical visits?
• How do you identify your child’s worries?
• Preparing for medical visits, including helpful things to do…and to avoid
• Making a “game plan” for the visit, including:
  • When to tell the child about the upcoming visit
  • Who should tell the child about the visit
  • What to say about the visit 
  • Who should attend the visit
  • What to do during the visit
  • Building coping skills after the visit
• Determining when therapy would help
• Resources

Books:

• Children's Books That Explore Medical Needs (Pediatric Home Service)
• 10 Great Children’s Books for Talking About Surgery, Sickness and Feelings (uofmhealth.org)

Guest presenter: Rachael Coakley, PhD

• Director, Clinical Innovation and Outreach in Pain Medicine, Department of Anesthesiology, Critical Care and Pain Medicine
• Founder and Director, Comfort Ability Program  
• Associate Professor in Psychology, Department of Psychiatry, Harvard Medical School and Boston Children’s Hospital

Included in this presentation are the following topics:

• What is pain?
• How does the body produce pain?
• What is the role of psychology in treating pain?
• How can parents and caregivers help?
• What resources are available?

Recommended book:

• "When Your Child Hurts: Effective Strategies to Increase Comfort, Reduce Stress, and Break the Cycle of Chronic Pain." By Rachael Coakley, PhD: This book teaches parents skills and strategies to increase a child’s comfort and to help with many pain-related challenges, such as problems with school, sleep, and friends. It is a practical guide filled with easy-to-use ideas for relieving a child’s chronic pain. Learn about this book.

The Comfort Ability Program

• Led by Rachael Coakley, PhD, Director, Clinical Innovation and Outreach in Pain Medicine, Department of Anesthesiology, Critical Care and Pain Medicine Associate Professor of Psychology, Harvard Medical School: The Comfort Ability Program helps kids, teens, and parents or caregivers learn how to better manage chronic pain problems such as headache, abdominal pain, nerve pain, joint pain, disease-related pain, post-surgical pain, or any other kind of ongoing pain.

Websites and other recommended resources:

• Meg Foundation: Pain management resources for toddlers, elementary school students, and teens. 
• Pain and Your Child or Teen: Terrific resource for explaining how pain works in the body and reviewing pain medications.
• ImaginAction: ImaginAction is a series of audio guides that coach mind-body skills for pain management.
• Pain Bytes: Comprehensive resource for learning about pain and pain-management skills. Includes engaging videos of children and families talking about pain.
• Creative Healing for Youth with Pain (CHYP): CHYP is an online community for teen and families living with chronic pain.
• WebMap Mobile: An interactive app for teens coping with chronic pain.
• See more websites dealing with sickle cell pain
• See more websites with teen resources