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The Family Medical Coping Initiative (FMCI) is a multidisciplinary coping support educational program spearheaded by a psychologist, Elisa Bronfman, PhD; a clinical social worker, Annie Banks, LICSW; and a child life specialist, Gail Windmueller, MA, MS, CCLS.

The Family Medical Coping Initiative aims to enhance patient and family coping with medical conditions and the experience of medical care. This mission is supported through offering online continuing education seminars for healthcare providers, webinars for patients and families, and access to a host of informational and supportive resources through the FMCI website.

Webinars

The following is a list of recorded family webinars currently available for viewing below.

Helping your child get ready for vaccinations and other pokes: Reducing anxiety: Overview and additional resources

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:

Worksheets, charts, and preparation materials:

Additional resources from PBS Learning Media:

Helping your child manage questions, staring, teasing, and bullying about their medical illness or difference: Overview and additional resources

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:

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:

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:

Helping your child adhere to medical advice: Overview and additional resources

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.

Helping your child overcome anxiety about medical visits: Overview and additional resources

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:

Helping your child manage persistent pain: Overview and additional resources

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:

 

Supporting siblings of children with medical conditions: Overview and additional resources

Guest presenter: Lauren Mednick, PhD

  • Clinical Psychologist, Department of Surgery, Boston Children’s Hospital
  • Clinical Psychologist, Colorectal and Pelvic Malformation Center, Boston Children’s Hospital
  • Assistant Professor of Psychology, Harvard Medical School

Included in this presentation are the following topics:

  • Common feelings and experiences
  • Do we need to worry about the siblings?
  • What can caregivers do to help siblings adjust and thrive?

Other sibling resources:

Preparing your child for medical procedures: Overview and additional resources

Guest presenter: Lauren Mednick, PhD

  • Clinical Psychologist, Department of Surgery, Boston Children’s Hospital
  • Clinical Psychologist, Colorectal and Pelvic Malformation Center, Boston Children’s Hospital
  • Assistant Professor of Psychology, Harvard Medical School

Guest presenter: Caitlin McGowan, CCLS

  • Certified Child Life Specialist, Phlebotomy and Pre-Op Admitting, Boston Children’s Hospital

Included in this presentation are the following topics:

  • Review common fears and reactions to medical procedures
  • Discuss the importance of preparation and how to best prepare your child for a medical procedure
  • Identify specific strategies to help your child effectively cope with medical procedures
  • Learn when and how to get your child additional support

Resource mentioned in presentation:

  • My Hospital Story: My Hospital Story is a visual narrative that can be used with patients of a wide variety of ages and developmental levels. These child-friendly visual stories help prepare children for every step of their visit or procedure. The stories include simple, reassuring descriptions and photos of different places your child may visit in the hospital, showing what the rooms look like, whom they might meet, and what might happen. Or visit the mobile web app at www.myhospitalstory.org.
Helping your child take medicine: Liquids, chewables, pills: Overview and additional resources

Included in this presentation are the following topics:

  • The importance of finding ways for children to take medicine more easily
  • Common issues children have when they need to take medicine
  • If your child is worried about taking medicine
  • Helping your child think differently about their medicine
  • Strategies to help your child (including infants) take liquid or chewable medication
  • A step-by-step approach to teaching your child how to swallow pills
  • How to access the Family Medical Coping Initiative pill swallowing guide

Resources:

  • "Teaching Your Child to Swallow Pills: A Step-by-Step Guide" (coming soon): This guide was prepared by the FMCI team. It provides step-by-step instructions, helpful pictures, and suggestions about how to help a child who has had a past negative experience with pill swallowing, has fears of swallowing pills, or just needs to learn how to swallow pills. The guide also suggests when it is time to seek professional psychological assistance for the child. This guide suggests various sizes of candy to assist in the process, but also includes non-sugar suggestions for children with allergies, diabetes, and for families who do not want their children to have candy.

Helping your child manage medical anxiety: Strategies for coping: Overview and additional resources

Included in this online webinar are the following topics:

  • What is anxiety?
  • What are common worries for kids of different ages?
  • When is worry considered problematic?
  • What can worry look like in a medical environment?
  • CBT (Cognitive Behavioral Therapy) strategies for anxiety: Strategies that caregivers can use.
  • What helps, and doesn’t, when dealing with child worries in a medical environment?
  • How can thinking about feelings be helpful, and how can you encourage it?

More resources:

Reading books can help children:

Books about preparing for visits and learning about bodies:

  • Younger kids:
    • "Daniel Tiger Visits the Doctor"
    • "Children, Kids and Toddler Books Read Aloud by Story Time Dad"
    • "The Berenstain Bears Go to the Doctor"
    • "Pooh Gets a Checkup"
    • "Elmo Goes to the Doctor"
  • Older kids:
    • "Scholastic Discover More: My Body"
    • "My First Human Body Book"
    • "Human Anatomy for Kids: A Junior Scientist's Guide to How We Move, Breathe, and Grow"
    • "Teen Our Body Ourselves"
    • "The Care and Keeping of You" (American Girl Books)

Watch: How to make DIY paper medical equipment:
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