Engaging Patients With Sickle Cell Disease and Their Families in Disease Education, Research, and Community Awareness

Abstract

This article describes the planning, implementation, and evaluation of Research and Education Day, an event designed to promote education and awareness of sickle cell disease (SCD), while also fostering and increasing participation by families in research studies. Quantitative and qualitative evaluation data (tracking of participant attendance and participation in research studies; program evaluation surveys) indicate that program goals were achieved. Results show that event attendance, research participation and retention, and community volunteerism has increased exponentially over the 8-year history of the event. Parents report that their top-rated reasons for attending are learning about research studies and participating in SCD-related educational activities. Data also show that families learn about the event in multiple ways (i.e., flyers, clinic staff, word of mouth, etc.). Research and Education Day is a model for educating participants with sickle cell and their families, engaging them in research studies, and enhancing community awareness and support.

KEYWORDS:

• chronic illness
• community education
• pediatric sickle cell disease
• research

Notes

Note. Not all statistics were available for all years as tracking became more detailed in later years (missing data is noted with a dash).

Note. *Program was shortened by 20 minutes due to mandatory H1N1 screening of all participants and volunteers.