Sickle Cell Disease

The Emily Center at Phoenix Children’s Hospital presents Our Journey with Sickle Cell Disease as a tool to help the family of a child diagnosed with Sickle Cell Disease identify what they need to know to safely care for their child at home.

When a child is cared for in the hospital or clinic setting, parents can be overwhelmed by nurses and doctors speaking medical jargon. Sometimes health care providers think they are clearly communicating, but do not check to make sure you understand their instructions. If you are able to teach back the information in your own words, you can be confident you do understand.

The Our Journey with Sickle Cell app is designed to:

— facilitate conversations between families and the health care team.

— help parents identify what they need to know to safely care for their child at home.

— give parents a safe way to admit what they do not know or understand and ask questions.

— cue families on what they need to teach back or demonstrate to their nurse or doctor.

This gives the health care provider an opportunity to confirm information and skills and

correct misunderstandings.

— help families feel confident that they can safely care for their child at home, know the signs of

possible problems, and know how to respond.

About The Emily Center at Phoenix Children’s Hospital:

Founded in 1990, the Center is named after Emily Anderson. Emily fought a rare form of leukemia for four years before losing her battle a few days before her seventh birthday.

Frustrated by the lack of easy to understand information about Emily’s illness, her parents founded The Emily Center so that families of sick children would always have access to pediatric health information that is accurate, easy to understand, and free of charge to Arizona’s families. http://www.theemilycenter.org and on Twitter @emilycenter.

The Our Journey with Sickle Cell Disease mobile app has been funded by a grant from Cox.