Department of Pediatrics, Section of Adolescent Medicine & Sports Medicine, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas.
Department of Pediatrics, Sections of Adolescent Medicine & Sports Medicine and Psychology, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas.
J Adolesc Health. 2021 Feb;68(2):394-402. doi: 10.1016/j.jadohealth.2020.05.053. Epub 2020 Jul 23.
The purpose of the study was to better understand the progressive development of health self-management among adolescents and emerging adults (AEAs) with chronic medical conditions in order to identify opportunities to prepare AEA for transition to adult-based care.
Twenty-three AEA aged 17-20 years with renal, inflammatory bowel, or rheumatologic diseases, and their parents, completed individual semistructured interviews describing each AEA's health self-management. Self-Determination Theory was used to frame interview questions, including the constructs of competence, autonomy, and autonomy support. Transcripts were analyzed using directed content analysis.
Four themes emerged: Development of Competence in Self-Management; Autonomy: Motivations to Self-Manage; Ways Important Others Support or Hinder Independence; and Normal Adolescent Development. AEA's competency and autonomy increased as they progressed from lack of knowledge about self-management to having knowledge without doing tasks, and, ultimately, to independent completion of tasks. Motivations to self-manage included avoiding sickness/weakness and wanting to engage in activities. Parents and providers supported AEA's autonomy through teaching and transferring responsibility. Parental fear/lack of trust in AEA's ability to self-manage hindered development of AEA's autonomy, producing anxiety. Normal adolescent development impacted timing of self-management task mastery.
As AEA gain competence in increasingly complex self-management tasks, they assume greater responsibility for managing their health. Competence and autonomy are facilitated by a feedback loop: AEA successful self-management increased parent trust, enabling the parent to transfer responsibility for more complex tasks. Conversely, parents' fear of the AEA doing wrong hinders transfer of responsibility, limiting competence and autonomy. Health-care providers play an important role in fostering autonomy.
本研究旨在深入了解患有慢性疾病的青少年和成年早期（AEA）健康自我管理的逐步发展，以便确定为 AEA 做好向成人医疗保健过渡的准备的机会。
23 名年龄在 17-20 岁的 AEA 患有肾脏、炎症性肠病或风湿性疾病，以及他们的父母，完成了描述每个 AEA 健康自我管理的个人半结构化访谈。采用自我决定理论来构建访谈问题，包括能力、自主性和自主性支持的结构。使用定向内容分析对转录本进行分析。
出现了四个主题：自我管理能力的发展；自主性：自我管理的动机；重要他人支持或阻碍独立性的方式；和正常的青少年发展。随着 AEA 从缺乏自我管理知识发展到有知识但不执行任务，最终独立完成任务，他们的能力和自主性不断提高。自我管理的动机包括避免生病/虚弱和想要参与活动。父母和提供者通过教学和转移责任来支持 AEA 的自主性。父母对 AEA 自我管理能力的恐惧/不信任阻碍了 AEA 自主性的发展，产生了焦虑。正常的青少年发展影响自我管理任务掌握的时间。
随着 AEA 在越来越复杂的自我管理任务中获得能力，他们承担更多管理自己健康的责任。能力和自主性通过反馈循环得到促进：AEA 成功的自我管理增加了父母的信任，使父母能够将更复杂任务的责任转移出去。相反，父母对 AEA 犯错的恐惧阻碍了责任的转移，限制了能力和自主性。医疗保健提供者在培养自主性方面发挥着重要作用。
