Caregiver Coping Resource Links

🔗 Links for Caregiver Coping Resource Section 1 - Diagnosis

Anchor At the Bottom of a Stormy Sea

Diaphragmatic Breathing

Pediatric Psychology Caregiver Wellbeing Special Interest Group

ImproveCareNow Patient Advisory Council resources

A-LiNK “How To Get Involved” sign-up section

🔗 Links for Caregiver Coping Resource Section 2 - Navigating the Joys and Challenges of Parenting a Child with IBD and/or AILD

22-minute listen of “Joy Snacking”

Check out this read about “Joy Snacking”

“Taking Care of Yourself” resource from the Caregiver Wellbeing Special Interest Group

the “Self Care: A Parent’s Guide to Taking Care of Yourself (as well as Your Child)” resource from the Courageous Parent Network

36-minute video on Taking Care of Yourself When Your Child has a Chronic Condition from the Parent and Caregiver Voices Project

🔗 Links for Caregiver Coping Resource Section 3 - How Stress Impacts our Overall Health

Anchor At the Bottom of a Stormy Sea mindfulness exercise

Diaphragmatic Breathing

Pediatric Psychology Caregiver Wellbeing Special Interest Group

“Self Care: A Parent’s Guide to Taking Care of Yourself (as well as Your Child)” resource from the Courageous Parent Network

🔗 Links for Caregiver Coping Resource Section 4 - Recognizing Emotions & Coping

4a - Fear & Anxiety

• Anchor At the Bottom of a Stormy Sea mindfulness exercise
• Diaphragmatic Breathing

4b - Grief

• Anchor At the Bottom of a Stormy Sea mindfulness exercise
• Diaphragmatic Breathing
• Pediatric Psychology Caregiver Wellbeing Special Interest Group
• Videos of other caregivers who ‘get it’ from the Parent and Caregivers Voices Project
• Anticipatory Grief resource from the Courageous Parents Network
• <1 minute video from a nurse explaining how grief can evolve over time

4c - Guilt

• Pain Champions Guide for Parents a resource from The Meg Foundation
• The SuperMeg Poke Planner 
• It Doesn’t Have to Hurt a program that provides evidence-based resources for coping with needle pokes
• Diaphragmatic Breathing
• Videos of other caregivers who ‘get it’ from the Parent and Caregivers Voices Project

4d - Medical Traumatic Stress

• “Afraid of the Doctor”a book about medical traumatic stress in children with health conditions
• A resource about supporting your child during an admission
• A resource about supporting your child after an admission
• A resource on the importance of returning to your child’s routine
• Pediatric Psychology Caregiver Wellbeing Special Interest Group

4e - Parental Coping and Self-Care

• 22-minute listen of “Joy Snacking”
• Read about “Joy Snacking”
• “Taking Care of Yourself” resource from the Caregiver Wellbeing Special Interest Group
• the “Self Care: A Parent’s Guide to Taking Care of Yourself (as well as Your Child)” resource from the Courageous Parent Network
• 36-minute video on Taking Care of Yourself When Your Child has a Chronic Condition from the Parent and Caregiver Voices Project
• Pediatric Psychology Caregiver Wellbeing Special Interest Group

🔗 Links for Caregiver Coping Resource Section 5 - The Male Caregiver Perspective

22-minute listen of “Joy Snacking”

Read about “Joy Snacking”

“Taking Care of Yourself” resource from the Caregiver Wellbeing Special Interest Group

The “Self Care: A Parent’s Guide to Taking Care of Yourself (as well as Your Child)” resource

Taking Care of Yourself When Your Child has a Chronic Condition from the Parent and Caregiver Voices Project

Pediatric Psychology Caregiver Wellbeing Special Interest Group

For a Dad-focused resource, check out this 39-minute video from the Parent and Caregiver Voices Project

🔗 Links for Caregiver Coping Resource Section 6 - Navigating Health Conditions and Siblings

• Mindful Parenting through the Caregiver Wellbeing Special Interest Group resource
• “Hi, My Name is Jack” by Christina Beall-Sullivan a children’s book specifically written for siblings of children with health needs titled
• Various articles and videos on sibling coping from Courageous Parents Network

🔗 Links for Caregiver Coping Resource Section 7 - Being a Role Model For Your Child Navigating and Coping with Feelings

Tori's son's video of an infusion day

ImproveCareNow's Parent/Family Advisory Council (IBD)

Autoimmune Liver Disease Network's A-LiNK Connections (AILD)

🔗 Links for Caregiver Coping Resource Section 8 - Supporting Your Child

8a - Talking About Emotions and Coping with Your Child

• American Psychological Association (APA)’s Magination Press publishes some excellent children’s books about all types of emotions and life experiences, including medical conditions
• ImproveCareNow’s Finding a Mental Health Professional resource
• brief videos of former Patient Advisory Council members from ImproveCareNow talking about why it’s important to talk about their feelings

8b - Seeking Peer Support for Your Child

• Crohn's & Colitis Foundation educational and advocacy events
• Crohn’s & Colitis Foundation’s Camp Oasis (a 1-week camp for patients with IBD)
• ImproveCareNow’s Patient Advisory Council (PAC)
• Crohn’s & Colitis Foundation’s Power of Two program
• Autoimmune Liver Disease Network's A-LiNK Connections (AILD)

8c - Checking in with Your Child - When to Push and When Not To Push

• ImproveCareNow’s Finding a Mental Health Professional resource

8d - Supporting a Healthy Body Image and Food Relationship

• Body Image Toolkit from ImproveCareNow
• Crohn’s & Colitis Foundation’s Diet and Nutrition page
• dietary resources through ImproveCareNow
• Nutritional Therapy for IBD
• Finding a Mental Health Professional resource

8e - Advocating for Your Child In and Out of the Medical Setting

• this resource from Courageous Parents Network for when you notice having a different approach than your child's team
• A resource from Courageous Parents Network about navigating the hospital
• Accommodations toolkit from ImproveCareNow
• Accommodations resource from the Crohn’s & Colitis Foundation
• Crohn’s & Colitis Foundation for what schools should know about IBD
• The A-LiNK Manual (this is an excellent and lengthy resource) under the Tools and Resources section
• Autoimmune Hepatitis Association
• PSC Partners Seeking A Cure

8f - Teaching Developmentally Appropriate Self-Advocacy Skills

• one hour webinar from the Crohn’s & Colitis Foundation on transitioning with IBD and strategies for teenagers and young adults

🔗 Links for Caregiver Coping Resource Section 10 - Special Considerations

10a - Very Early-Onset IBD (VEO-IBD)

• excellent 9-minute video with Tori and her brave son sharing his infusion clinic experience
• The Meg Foundation’s Poke Plan
• Comfort Ability website
• The Meg Foundation resources for supporting pain management
  • Babies and toddlers (0-2 years of age)
  • Kids (3-11 years of age)

10b - Surgery for IBD

• Shared Decision-Making tool for surgery in pediatric IBD from ImproveCareNow
• Ostomy Toolkit from ImproveCareNow
• United Ostomy Association of America’s Pediatric Ostomy Support Group
• The Meg Foundation
• Finding a Mental Health Professional resource from ImproveCareNow

10c - Special Considerations in Autoimmune Liver Disease (AILD)

• Autoimmune Liver Disease Network for Kids (A-LiNK)
• consider joining A-LiNK Connections (AILD) by visiting the "How To Get Involved" sign-up section
• The A-LiNK Manual (this is an excellent and lengthy resource) under the Tools and Resources section
• Autoimmune Hepatitis Association
• PSC Partners Seeking A Cure
• Pediatric Psychology Caregiver Wellbeing Special Interest Group

🔗 Links for Caregiver Coping Resource Section 11 - Health Equity

Check out the incredible resources and community of the Color of Gastrointestinal Illnesses

Check out the excellent resources and community of the South Asian IBD Alliance

Watch the American Academy of Pediatrics’ Stockman Lecture featuring Christian Lawson’s experience as a young black patient with IBD

🔗 Links for Caregiver Coping Resource Section 12 - Practical Tools and Suggestions for Navigating Life and Pediatric Chronic Illness

ImproveCareNow’s Parent/Family Advisory Council (IBD)

Autoimmune Liver Disease Network's A-LiNK Connections (AILD)

Pediatric Psychology Caregiver Wellbeing Special Interest Group

🔗 Links for Caregiver Coping Resource Section 13 - Chronic Illness Burnout and Treatment Plan Challenges

Anchor At the Bottom of a Stormy Sea a mindfulness exercise 

Diaphragmatic Breathing

Pediatric Psychology Caregiver Wellbeing Special Interest Group

ImproveCareNow’s Finding a Mental Health Professional resource

🔗 Links for Caregiver Coping Resource Section 14 - How to Talk About Your Child’s Diagnosis

ImproveCareNow’s Accommodations for IBD

🔗 Links for Caregiver Coping Resource Section 15 - Handling Work While Caring for a Sick Child

ImproveCareNow’s Parent/Family Advisory Council (IBD)

Autoimmune Liver Disease Network's A-LiNK Connections (AILD)

🔗 Links for Caregiver Coping Resource Section 16 - Insurance and Finances

Good Rx

ImproveCareNow’s Parent/Family Advisory Council (IBD)

A-LiNK Connections (AILD)

🔗 Links for Caregiver Coping Resource Section 17 - Travel with Medical Conditions

Ally’s Law or the Restroom Access Act

ImproveCareNow’s Travel Toolkit

Crohn’s & Colitis Foundation’s travel website

🔗 Links for Caregiver Coping Resource Section 18 - Taking Action

ImproveCareNow’s Parent/Family Advisory Council (IBD)

A-LiNK Connections (AILD)

Crohn’s & Colitis Foundation’s Power of Two program

Learn about volunteer and advocacy opportunities through the Crohn’s & Colitis Foundation:

• Advocating (e.g., contacting your local legislators)
• Volunteering and/or fundraising (e.g., Take Steps walk)