Coming of age with sickle cell disease and the role of patient as teacher

Abstract

Objective: Patients with chronic conditions are encouraged to optimize their health care experience by educating themselves regarding their condition and care. This study sought to explore the ways in which adolescents and young adults with sickle cell disease (SCD) educate others about their condition and the meanings they give to their experiences with health care professionals.

Methods: Seventeen individuals with SCD participated in in-depth interviews regarding their experiences as an individual with SCD seeking health care.

Results: Our analysis revealed participants' belief in the ignorance concerning SCD by others, including health care professionals. Additionally, the participants suggested significant consequences of such a lack of knowledge and the strategies they used to overcome this barrier--primarily the development of the identity of patient-as-teacher.

Conclusion: Sickle cell patients in general and adolescent sickle cell patients in particular are often underestimated and discounted as they relate the details of their pain. This study demonstrates that these participants are not only keepers of knowledge but also must work to educate authority figures and peers in their lives to ensure they are properly cared for and that those around them understand their disease.