title: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Pediatrics and Communicable Diseases, University of Michigan Medical School, 2600 Green Rd, Ann Arbor, MI 48105, USA.
authors.forename: Andrew D
authors.initials: AD
authors.lastname: Campbell
authors.forename: Paula T
authors.initials: PT
authors.lastname: Ross
authors.forename: Arno K
authors.initials: AK
authors.lastname: Kumagai
authors.forename: Jennifer G
authors.initials: JG
authors.lastname: Christner
authors.forename: Monica L
authors.initials: ML
authors.lastname: Lypson
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology*; D004522:Educational Status; D004651:Employment / Q000706:statistics & numerical data; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010353:Patient Education as Topic