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Author Notes:

Corresponding Author: Patricia Moreland, 1540 Avenue Place #2404, Atlanta, Georgia, 919-917-5374, pjmoreland2012@gmail.com.

Conflicts of interest: The authors declare no conflicts of interest


Research Funding:

This research was supported in part by the National Institutes of Nursing Research T32 NR007091: Interventions to Prevent and Manage Chronic Illness and also by the American Nurses’ Foundation.


  • Science & Technology
  • Life Sciences & Biomedicine
  • Cardiac & Cardiovascular Systems
  • Nursing
  • Cardiovascular System & Cardiology
  • congenital heart disease
  • posttraumatic stress disorder
  • uncertainty
  • young adults
  • CARE
  • LIFE

Illness Uncertainty and Posttraumatic Stress in Young Adults With Congenital Heart Disease


Journal Title:

Journal of Cardiovascular Nursing


Volume 33, Number 4


, Pages 356-362

Type of Work:

Article | Post-print: After Peer Review


Background: Young adults with congenital heart disease (CHD) are at risk for chronic illness uncertainty in 4 domains: ambiguity about the state of their illness; lack of information about the disease, its treatment, and comorbidities; complexity of the healthcare system and relationship with healthcare providers; and unpredictability of the illness course and outcome. Chronic uncertainty has been associated with posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD). Objective: The aims of this study were to explore how young adults with CHD experience uncertainty and to describe the relationship between PTSS and the appraisal and management process. Methods: An exploratory, mixed methods design was used. Data were collected in person and via Skype from 25 participants (19-35 years old), who were diagnosed with CHD during childhood and able to read and write English. In-depth interviews and the University of California at Los Angeles Posttraumatic Stress Disorder Reaction Index were used to collect data. Qualitative data were analyzed using the constant comparative method. Results: The 4 domains of uncertainty were evident in the narratives. The PTSD mean (SD) score was 31.3 (7.7). Six participants met criteria for PTSD. Narrative analysis revealed a relationship between severity of PTSS and the appraisal and management of uncertainty. Participants with PTSD used management strategies that included avoidance, reexperiencing, and hyperarousal. Conclusions: Young adults with CHD may be at risk for the development of long-term psychological stress and PTSD in the setting of chronic uncertainty. Regular monitoring to identify PTSS/PTSD may be a means to promote treatment adherence and participation in healthcare.

Copyright information:

© 2018 Lippincott Williams and Wilkins. All rights reserved.

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