Brave Kids

Wonderful site for children with a variety of chronic illnesses and their families.  There is a focus on providing resources about medical information, community services, parent support through a message board and “Club Brave Kids” which children can join and share their experiences.  The site has a family centered focus to provide support and information for the child with the chronic illness, their siblings and their parents.  Sickle Cell Disease is one of the many chronic and life threatening conditions with available resources.

Small Comforts Foundation

Small Comforts is a nonprofit organization dedicated to providing information and support to families of individuals with chronic illness.  The focus is on supporting the care giver of a person (adult or child) with a chronic illness.  There are a number of valuable links to other web sites also.

Ian Anderson Continuing Education Program in End-of Life Care

This site includes an educational case study and slides based on a learning module called “Decision-making in Pediatric Palliative Care”.  It is an excellent resource for discussion about end of life care with families and children. 

Procedure-Related Pain Management

While this site is focused on cancer pain management in children, there are some useful resources related to procedural pain management in children regardless of diagnosis. General guidelines for treatment goals and pain management techniques to help children deal with common procedures are discussed. Guidelines for pharmacologic management and cognitive behavioral techniques such as distraction and guided imagery can be applied to children and families with many different diagnoses.

 

There are sites that describe specific pediatric pain assessment tools

The Oucher

This is a site that explains about The Oucher- a pediatric pain assessment tool developed by Dr. Judith Beyer.  Directions for use are in English and Spanish.  There are two scales - a number 1-10 scale and a picture scale. The picture scale is for young children (ages 3-7 yrs.) to use, the number scale is for older children who can count to 10, or who understand that the number 10 is greater than the number 5, the same way the number 5 is greater than the number 1.

Wong-Baker FACES Pain Rating Scale

This site, Wong on Web, describes the Wong/Baker FACES pain assessment tool and provides information about how to use the tool and research support for effectiveness.