Written educational materials for families of chronically ill children

To provide information on evaluation of written educational materials and to illustrate the evaluation of Sickle Cell Disease: A Family Guide (SCDFG) used for children with sickle cell disease (SCD) and their families. A large Valerie Fund Children's Center developed the SCDFG in collaboration with the New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services. Two university faculty members and one pediatric nurse practitioner (NP) working in the clinic conducted an evaluation of the effectiveness and usefulness of the SCDFG.

Forty-eight caregivers of children with SCD who were using the SCDFG were asked to complete a survey developed by the investigators. The survey was completed during a clinic visit.

The SCDFG met the standards for content, organization, layout, linguistics, visuals, readability, and comprehension. Overall, the caregivers were knowledgeable about the cause, signs and symptoms, and what to do during a sickle crisis. More than half the participants reported that they felt confident in managing their child's problems related to SCD. Confidence of the caregivers was positively correlated with their perception that the information in the SCDFG was helpful and easy to understand.

NPs need to evaluate written educational materials that are used as part of a multifaceted approach to the care of children with chronic illnesses. A planned systematic evaluation provides the NP with information about the efficacy and usefulness of the written educational materials. These materials may help empower children and caregivers to manage their long-term illnesses.