Jennifer Fieten, MA, CCLS
SIU School of Medicine at St. John’s Children’s Hospital
Over the last nearly two years, the pandemic has affected every aspect of life and has greatly impacted child life specialists and the child life field. Some during this time continued their role as specialists in their respective settings. Others found their roles adjusted to accommodate the effects of COVID on their healthcare systems while still others found their positions eliminated. Child life specialists have found themselves, either professionally or personally, using their skills to support those affected by, and with, COVID. COVID-19 is a disease caused by the virus SARS-CoV-2, and most often causes respiratory symptoms much like a cold, the flu, or pneumonia (Centers for Disease Control and Prevention, 2021a). To date, there have been over 250 million cases of COVID-19 globally (World Health Organization, 2021). Now, , we may also find ourselves caring for children impacted by a residual diagnosis related to COVID, Multisystem Inflammatory Syndrome in Children, also known as MIS-C.
“MIS-C is an extreme immune response marked by shock, fever, and multi-organ inflammation. It may cause severe inflammation in the heart, lungs, blood vessels, kidneys, digestive system, brain, skin or eyes” (Mostafavi, 2021, para 6). The cause of MIS-C is not currently known, but most patients tested positive for COVID-19 or had been exposed to someone with the virus. As of November 1, 2021, there were 5,525 confirm cases in the United States, with 48 deaths (Centers for Disease Control and Prevention, 2021b). Given the prevalence of COVID-19, and its impact on our pediatric patients, it is important that we, as child life specialists, understand MIS-C and are equipped with resources to use when supporting children and families affected by COVID-19 and MIS-C.
Resources for Patients and Families:
George, A. (2020). Coping with COVID-19 workbook. https://www.childlife.org/docs/default-source/covid-19/coping-with-covid-19-work-book-finalized.pdf?sfvrsn=315c8a4d_0
A work book designed to help children and teens communicate and cope with their feelings and emotions regarding the global COVID 19 pandemic.
Fratangelo, E. (2020). Coronavirus Coloring Pamphlet. https://www.childlife.org/docs/default-source/covid-19/coronavirus-coloring-pamphlet-us-version.pdf?sfvrsn=e9228a4d_2
This resource is a coloring pamphlet using developmentally appropriate language to explain coronavirus related PPE to children.
Johns Hopkins Children's Center (2020). COVID-19 activity book. https://www.hopkinsmedicine.org/johns-hopkins-childrens-center/patients-and-families/_documents/covid-19-resources-for-families/covid-19-activity-book.pdf
This activity book uses developmentally appropriate language to inform the patient about COVID-19 and how to protect against transmission.
Long, N. My 2020 COVID-19 time capsule. https://www.nbc4i.com/wp-content/uploads/sites/18/2020/04/COVID19-TIME-CAPSULE-3.pdf
This resource contains workbook pages for the child to use to create a time capsule during the COVID-19 pandemic.
McCarthy, S. (2020). My lock down diary. https://www.mylockdowndiary.com/
This diary contains pages for the child to complete to encourage positive reflections related to being on lockdown during the pandemic.
Memorial Health Dwaine & Cynthia Willett Children’s Hospital of Savannah (2020). Stay at home activities. https://www.childlife.org/docs/default-source/covid-19/msav_general-hospital_or-schedulers-may-breakfast_flyer_8-5x11.pdf?sfvrsn=4f008a4d_2
This resource contains recommendations for activities that can be done while at home from the team of child life specialists at Memorial Heath Dwaine & Cynthia Willett Children’s Hospital of Savannah.
Mills, J.A. (2020). Penny Pumpkin, don’t forget your mask! Independently published. ISBN-13, 979-8685921888.
This is a story to help kids learn more about germs, viruses, and the pandemic, as well as understand the importance of wearing masks and how they can help to prevent the spread of COVID-19.
Primary Children's Hospital (2020). When you're sick: An activity book explaining PPE.https://www.childlife.org/docs/default-source/covid-19/when-sick-ppe.pdf?sfvrsn=c6858a4d_0
This activity resource uses developmentally appropriate language to explain PPE and why it is used to protect against different germs and viruses.
Playworks. (n.d.). Play at home. Retrieved from https://www.playworks.org/get-involved/play-at-home/ Resources for play at home and daily Facebook Live "recess."
This playbook contains games that can be played anywhere so that children can play in any space safely and in accordance with all CDC guidelines to help prevent the spread of coronavirus.
Posner-Sanchez, A.. (2020). Even grouches wear masks. Random House.
This resource emphasizes how important it is for everyone to wear a mask--even Oscar the Grouch.
Sesame Workshop. (2020). Heroes wear masks: Elmo’s super adventure. Sourcebooks Wonderland.
Elmo is heading to school, and he wants to be a school superhero! Young children will join Elmo as he gets ready like a hero and learns about wearing masks and washing hands.
Sirkis-Thompson, L.. (2020). Lucy’s mask. Independently published.
In this book, Lucy finds out her mom is making her a special mask. Lucy loves masks! Of course, she doesn’t realize that the mask her mom is making is not part of a costume but one that will keep her safe.
St. Jude Children's Research Hospital (2020). Learn about coronavirus and covid-19 activity book. https://together.stjude.org/content/dam/together/en-us/other/covid-19/coronavirus-activity-book-together-english.pdf
This activity book provides developmentally appropriate information regarding coronavirus and COVID-19.
St. Jude Children's Research Hospital (2020). Learn about the coronavirus coloring book. https://together.stjude.org/content/dam/together/en-us/other/covid-19/coronavirus-for-kids-together.pdf
This coloring book uses developmentally appropriate language to inform children about coronavirus and COVID-19 vaccines.
Wonders & Worries (2020). Coronavirus: How to support your child activity sheet. https://www.childlife.org/docs/default-source/covid-19/ww_covid19acrosticflyer.pdf?sfvrsn=f42e8a4d_2
This is a resource to assist caregivers and patients with expressing their thoughts and feelings regarding coronavirus.
Yaroslawitz, C. F. (2020). 2020 COVID-19 family guidebook.https://www.childlife.org/docs/default-source/covid-19/covid19-family-guidebook-full---4112020.pdf?sfvrsn=62848a4d_0
Activities to help children, teens, adults, and grandparents deal with feelings and changes during the Coronavirus Pandemic.
Young, R. (2020). Riley’s masked adventure. Independently published. ASIN, B08L24FF36.
Riley's Masked Adventure is a story and that follows Riley through her experience as she learns what viruses are, why she should wear a mask, and how to use one correctly.
Resources for Caregivers:
Center for Disease Control and Prevention. (2021). For parents: multisystem inflammatory syndrome in children (MIS-C) associated with COVID-19. https://www.cdc.gov/mis/mis-c.html
This website provides information for parents about what is currently known about MIS-C, what to do if parents think that their child has MIS-C, medical tests and procedures associated with making a diagnosis, and how to protect children from both COVID-19 and MIS-C.
Mostafavi, B. (2021). MIS-C: The COVID-related condition parents need to know about. https://healthblog.uofmhealth.org/childrens-health/mis-c-covid-related-condition-parents-need-to-know-about
This resource shares what is currently known about MIS-C, the signs and symptoms of MIS-C, and ways to prevent MIS-C.
Resources for the Child Life Professional:
American Academy of Pediatrics. (2021). Multisystem inflammatory syndrome in children (MIS-C) interim guidance.https://www.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/clinical-guidance/multisystem-inflammatory-syndrome-in-children-mis-c-interim-guidance/
This website provides a definition of MIS-C, information regarding the signs and symptoms of MIS-C, as well as information regarding medical tests and procedures that contribute to making a diagnosis
Feldstein, L.R., Tenforde, M.W., & Friedman, K.G.. (2021). Characteristics and outcomes of U.S. children and adolescents with multisystem inflammatory syndrome in children (MIS-C) compared with severe acute COVID-19. Journal of the American Medical Association, 325(11), 1074-1087.
This study suggests patterns of clinical presentation and organ involvement that distinguish between patients with MIS-C and severe acute COVID-19.
Feldstein, L.R., Rose, E.B., Horowitz, S.M., Collins, J.P., Newhams, M.M., Son, M.B.F., Newburger, J., Kleinman, L.C., Heidemann, S.M., Martin, A.A., Singh, A.R., & Li, S.. (2020) Multisystem inflammatory syndrome in U.S. children and adolescents. The New England Journal of Medicine, 383, 334-346.
This article seeks to understand the epidemiology and clinical course of multisystem inflammatory syndrome in children (MIS-C) and its temporal association with coronavirus disease 2019 (COVID-19).
Jennifer Fieten, MA, CCLS, has been a child life specialist for over 20 years, providing child life support for children and families both in hospitals and as a part of a pediatric palliative care and hospice program. Currently, Jennifer serves as a Medical Social Consultant/Child Life Specialist with SIU School of Medicine at St. John’s Children’s Hospital in Springfield, IL. For additional information, Jennifer can be reached at jfieten36@siumed.edu or jennifer.fieten@hshs.org .