Department of Pediatrics and Communicable Diseases, University of Michigan Medical School, 2600 Green Rd, Ann Arbor, MI 48105, USA.
J Natl Med Assoc. 2010 Nov;102(11):1073-8. doi: 10.1016/s0027-9684(15)30735-5.
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.
Seventeen individuals with SCD participated in in-depth interviews regarding their experiences as an individual with SCD seeking health care.
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.
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.
鼓励慢性病患者通过了解自身病情和护理知识来优化其医疗体验。本研究旨在探讨镰状细胞病（SCD）青少年和青年患者向他人传授自身病情的方式，以及他们对与医疗保健专业人员相关经历的赋予的意义。
17 名 SCD 患者参与了有关他们作为寻求医疗保健的 SCD 个体的经历的深入访谈。
我们的分析揭示了参与者对他人（包括医疗保健专业人员）对 SCD 的无知的信念。此外，参与者提出了这种缺乏知识的重大后果，以及他们用来克服这一障碍的策略——主要是患者作为教师的身份的发展。
一般来说，镰状细胞病患者，特别是青少年镰状细胞病患者，在描述自身疼痛的细节时往往被低估和忽视。本研究表明，这些参与者不仅是知识的守护者，而且还必须努力教育他们生活中的权威人士和同龄人，以确保他们得到妥善照顾，并且周围的人了解他们的疾病。
