Collections > UNC Chapel Hill Undergraduate Honors Theses Collection > "I Have: Cancer" An Educational Tool for Pediatric Patients with Intellectual and Developmental Disabilities and an Oncological Diagnosis

I have hypothesized a series of educational booklets that can be used to help pediatric patients with intellectual and developmental disabilities (I/DD) navigate an inpatient stay. For this project I have focused on pediatric cancer and created the first booklet, “I Have: Cancer.” I envision the “I Have” series to expand and encompass more diseases and conditions as I continue my career and education. From my own experience and after consulting with people with multidisciplinary experience with pediatric I/DD, what seemed most helpful to the pediatric patient would be an individualized and interactive approach to patient education. This care booklet could be an inclusive and appropriate method of explanation of cancer for interdisciplinary use. My intention is to promote appropriate language and terminology, advocate for pediatric patients with I/DD and their families, and above all, to educate these patients about the process of having cancer and being hospitalized. The hospital can be an alarming place for any child, and for those with I/DD it can be, confusing, and frightening, and disruptive to the routines that can be a source of comfort to them. I hope to alleviate some of the stress that these pediatric patients may experience, and provide a tool for communication between pediatric patients with I/DD and their caregivers. After working with this population, I found it imperative to not only research, but to also provide an appropriate resource or tool for pediatric patients with I/DD, as the needs of these individuals differ from the standard needs of traditional pediatric patients. Children with I/DD are a diverse group whom healthcare professionals will inevitably see in practice. Nurses should be prepared to provide individualized, meaningful, quality care including patient education.