Resources

Patient Specific Resources

The Road to Recovery: Tips & Advice for Youth With Stroke (English)

In a clinical research study examining lived experiences of survivors of pediatric stroke, participants were asked what advice they would have for a peer newly diagnosed with stroke. A selection of their insightful responses was compiled into a handout which you can access here. We hope these encouraging words about adjusting to life after pediatric stroke are helpful to families who have recently gone through this experience. If you are interested in reading the published study, it is available in open access here.

Source: Champigny, C.M., Feldman, S.J., Westmacott, R., Wojtowicz, M., Aurin, C., Dlamini, N., Dirks, P., & Desrocher, M. (2023). Adjusting to life after pediatric stroke: A qualitative study. Developmental Medicine & Child Neurology, 65(10), 1357-1365. https://doi.org/10.1111/dmcn.15556

With the help of IPSO members, the authors of the Road to Recovery: Tips & Advice for Youth with Stroke have also translated the handout into other languages. Please contact IPSO if you would like to help with the translation of the handout into your language. 

Arabic – Tips & Advice for Youth With Stroke

Bahasa Indonesia – Tips & Advice for Youth With Stroke

French – Tips & Advice for Youth With Stroke

Spanish – Tips & Advice for Youth With Stroke

Back to School Resources

Australia:

Your Child’s IEP – Guide for Families on Personalised Plans for Learning and Support – Australian Alliance for Inclusive Education
Students with disabilities – Australian Government Department of Education

Canada:

Navigating the World of Special Education – Canadian Pediatric Stroke Support Association
Understanding Education Rights in Canada – AIDE Canada

Germany: 

Rehakliniken-Kindlicher-Schlaganfall

Spain:

Guías – Asociacion de Hemiparesia Infantil “Hemiweb”

Switzerland: 

Schweizer Paraplegiker-Zentrum Nottwil

United Kingdom:

Returning to School after Stroke – Stroke Association

United States:

Education – Children’s Hemiplegia and Stroke Association

BrainSTEPs: An example of a successful school re-entry program for children with brain injury is which is available in Pennsylvania and Colorado.

Child Neurology Foundation

Perinatal/infant Stroke
Childhood Stroke

International Alliance for Pediatric Stroke

Pediatric Stroke Family Tool Kit
Pediatric Stroke Family Tool Kit- PDF

Family Guides

Australian’s Family Guide to Pediatric Stroke
Canada’s Family Guide to Pediatric Stroke
United Kingdom Pediatric Stroke Guidance

Podcasts

JCN: NICU series Prenatal Brain Hemorrhage
Dr. Sonika Agarwal of Children’s Hospital of Philadelphia talks about prenatal brain hemorrhage.
JCN: Interview with Mary Kay Ballasiotes, pediatric stroke advocate: Dr. Sonika Agarwal of Children’s Hospital of Philadelphia interviews Mary Kay Ballasiotes, pediatric stroke advocate and parent of a child with cerebral palsy from a stroke at birth.
JCN: What Your Pediatric Neurologist Wants You to Know: Neonatal Neurology: JCN’s Residents and Fellows Board Director, Dr. Alison Christy, interviews Dr. Sonika Agarwal, a neonatal neurologist from Children’s Hospital in Philadelphia.
Stroke in Children Podcast: Dr. Heather Fullerton, a pediatric neurologist at UCSF, discusses stroke in children, the causes and path to recovery with Bill Monroe on StrokeCast.
JCN: Pediatric Stroke Podcast: Dr. Alison Christy interviews Dr. Sarah Lee from Stanford Children’s Health and Dr. Gabrielle deVeber from Hospital for Sick Children about their publication, Moyamoya Disease in Children: Results from the International Pediatric Stroke Study. She also interviews Dr. Lisa Sun from John Hopkins All Children’s Hospital.
Stroke Can Happen At Any Age Video Series: The International Alliance for Pediatric Stroke partnered with the American Heart Association/American Stroke Association to produce videos to help raise awareness of perinatal and pediatric strokes.

Video Resources

Family-Clinician Partnership to Educate Families Affected by Pediatric Stroke or Brain Injury: Watch the May 2023 Grands Rounds at Mass General for Pediatric Medicine, which highlights the work of the Pediatric Stroke and Brain Injury Education and Outreach Program at Mass General for Children. This program educates patients, families and medical providers on a global scale.

Pediatric Stroke Education Series: The Pediatric Stroke Advisory Council at Massachusetts General Hospital and Spaulding Rehabilitation Hospital in partnership with the Young Genetic Stroke Alliance and the International Alliance for Pediatric Stroke hosts monthly educational events to support families with children who have had a pediatric stroke or brain injury. Checkout their website for more information on how to register for upcoming events and watch recordings of past events.

Paediatric Stroke Aware the World: The International Pediatric Stroke Study has created a video entitled Paediatric Stroke: A View Around the World, to highlight inspiring paediatric stroke research being conducted around the world. The researchers in the video share a common goal: to continue to improve the care provided to paediatric stroke patients and their families. The COVID-19 pandemic has certainly reminded us all that we are part of a global village, and we are stronger together.

ASA Materials

ASA/IAPS Pediatric Stroke Infographic English
ASA/IAPS Pediatric Stroke Infographic Spanish
ASA/IAPS Perinatal Stroke Infographic English
ASA/IAPS Perinatal Stroke Infographic Spanish

ASA/IAPS Sickle Cell and Pediatric Stroke Key Facts
ASA/IAPS Sickle Cell and Pediatric Stroke Infographic

Clinical Research Studies

Vascular effects of Infection in Pediatric Stroke Findings (VIPS I)