Table 2 Parent desired care plan content

• Medication list including drug, dose, route, administration instructions

• Brief description of the non-medical characteristics of the child

• List of health care providers and contact information

• The child’s development

• Pertinent family/social information

• Child’s medical history

• How they communicate

• Emergency care guidelines

• What makes them smile/laugh

• Date and author of the last revision of the care plan

• Things they enjoy

• Photograph of the child

• Problem/diagnosis list

• Health insurance information

• Alerts section

• Glossary of medical terms

• Allergies

• Summary of technology and/or equipment needs

• Pertinent diet/nutrition information

• Information about how quickly the child may deteriorate in a crisis

• A summary of the parent’s role/expertise in their child’s care