Congress Abstracts 2005

36

INTERNET RESOURCE FOR PARENTS OF CHILDREN WITH CANCER. Deborah Lewis, EdD, CRNP, MPH, Sriya Gunawardena, MD, and Jim Harrison, PhD, MD, University of Pittsburgh, Pittsburgh, PA; and Veronica Eckroth, CRNP, Childrens Hospital of Pittsburgh, Pittsburgh, PA.

Concrete information needs are the number one needs expressed by family members and patients with cancer. With advances in information technology patients and families now have many different ways to access healthcare information. Oncology nurses are challenged to understand how to best utilize these innovative approaches to support patient and families’ information and communication needs.

Few studies examine the use or impact of Internet information resources for parents of children with cancer. Consequently, little is know about how Internet information and communication resources would be used in the context of daily information access and healthcare decision-making for these parents. The goal for this research is to understand how parents of children with cancer use the Internet to seek health information and to inform the design of a web based resource that will provide family-centered information.

Consumer Health Informatics is the integration of consumer health information and information technology. Family-centered care emphasizes the importance of provider-caregiver information sharing. This research is based on a philosophy of family-centered information sharing utilizing information technology.

To determine parent Internet use we utilized a 34 question structured interview. Next, three prototype websites were designed and usability testing was completed with both parent’s and oncology clinic providers. Trained facilitators presented the websites and elicited feedback using think-aloud procedures and formal task analysis using scripted scenarios. Field notes were taken.

The research employed ethnographic methods of analysis for the purpose of understanding the need and usability of the prototype designs. Descriptive statistics, content and task analysis were completed.

One hundred seventeen parents completed the Internet use interviews. Most have access to the Internet from home and have searched for information regarding their child. Few have used use e-mail to communicate with care providers. User testing: parents (N = 17) and oncology clinic staff (N = 12) expressed a preference for prototype website designs that were graphically pleasing and simple to navigate. A specialized search engine was noted as an important component. Currently the final website prototype is being implemented with 30 families to further understand “best practice” in healthcare website design and the impact of this Internet resource on family-caregiver information sharing.