Are you the parent of an infant, child, or adolescent hospitalized in a Pediatric Intensive Care Unit? Are you looking for unbiased information regarding pertinent medical, surgical, or psychosocial issues?

Well, we don't claim to have many answers, but we would like to be able to help in some way. If you have found resources on the Internet for families of PICU patients, please let us know! If you have had a particular experience that you feel might help other families in the future, write to us. Meanwhile, here's what we've found so far.

Here's a great place to start: From the AAP Section on Critical Care: What is a Pediatric Critical Care Specialist? (pdf; 88K)

• Patient Education for Congenital Heart Disease, from the Cove Point Foundation and the University of Virginia Children's Heart Center. Excellent descriptions and interactive images.
• Aaron's Tracheostomy Page
• The Neurotrauma Registry; a resource list "for individuals who have sustained a traumatic brain injury (TBI), spinal cord injury, or other complex neurotrauma"
• Hemi-Kids; a web resource for parents of children with hemiparesis or hemiplegia
• Congenital Heart Disease Patient Education Materials, from Southern Illinois University, Department of Pediatrics
• CHERUBS: The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support
• ARDS Support Center; a resource for patients and families
• Children's Health Information Network: Congenital Heart Disease Information and Resources
• Pediatric Neurosurgery
• Poisoning: Find your Poison Control Center, from the American Association of Poison Control Centers
• Meningococcal meningitis
• An extensive disease-specific listing at Pediatric Pointers
• General information on numerous diseases and health issues: AllRefer.com

General Parent resources

• Who's who in the hospital: a guide to the health care professionals you may meet, from Children's Hospital of San Diego.
• Hearts of Courage, a website for parents of children with special needs.
• ICU-USA.com; a resource for families of ICU patients, from the SCCM and AACN
• Family Education Network; well child education for families
• Bright Futures; guidelines for preventative health care for kids, developmental issues
• National Association of Children's Hospitals and Related Institutions (NACHRI)
• MedLine Plus; a consumer-oriented resource for locating health information online. From The National Library of Medicine.
• PDR Family Guide Encyclopedia of Medical Care, from Health Square
• US News Best Hospital Finder; search by specialty or region.
• Diseases and Treatments and Medications: patient/family oriented information resources, from MedicineNet.
• On-Line Doctor Finder, from the American Medical Association
• HealthAnswers
• The Columbia University College of Physicians and Surgeons Complete Home Medical Guide. A full-text online book that includes information about Common First Aid Procedures and Basics of CPR and Life Support.
• Band-Aids and Backboards; chronic illness and hospitalization issues from the patient's perspective
• IRSC: Internet Resources for Special Children
• Family Village, a comprehensive resource for patients and families with many conditions and disabilities
• Family/Patient Education, from Children's Hospital Medical Center in Cincinnati
• MedHelp has an excellent searchable library of information files for patients and families
• An excellent list is available through PEDINFO

• Helping Children Cope with the Intensive Care Unit, from the Virtual Children's Hospital and University of Iowa Health Care

• Reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home. Impicciatore P, Pandolfini C, Casella N, Bonati M. Br Med J 1997; 314:1875-9. (full-text)
• The Internet as a Source for Current Patient Information. McClung HJ, Murray RD, Heitlinger LA. Pediatrics 1998 101: e2. (full-text)
• DISCERN; a tool to evaluate clinical information publications, directed primarily to consumers of health care.
• Medline Plus; a service of The National Library of Medicine geared towards helping the public find reliable sources of information about health and disease.

Please note that we are unable to provide direct consultative services for particular patients in this forum. If you have questions about your child's condition or treatment, ask his/her doctors and nurses, and keep asking until your questions are answered!

If you have suggestions for this page, please send email!