Celine C Lee1, Cassandra J Enzler1, Beth H Garland2, Cortney J Zimmerman3, Jean L Raphael4, Albert C Hergenroeder1, Constance M Wiemann5. 1. Department of Pediatrics, Section of Adolescent Medicine & Sports Medicine, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas. 2. Department of Pediatrics, Sections of Adolescent Medicine & Sports Medicine and Psychology, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas. 3. Department of Pediatrics, Section of Psychology and Renal Service, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas. 4. Department of Pediatrics, Section of Academic General Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas. 5. Department of Pediatrics, Section of Adolescent Medicine & Sports Medicine, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas. Electronic address: cwiemann@bcm.edu.
Abstract
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Keywords:
Adolescents and emerging adults with special health-care needs; Autonomy; Competence; Health-care transition; Healthcare self-management; Relatedness; Self-determination theory