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

• Type of Material: Article
• Authors: Patricia Moreland, Emory University; Sheila Judge Santacroce, University of North Carolina
• Language: English
• Date: 2018-07-01
• Publisher: Lippincott, Williams & Wilkins
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2018 Lippincott Williams and Wilkins. All rights reserved.
• Final Published Version (URL): http://dx.doi.org/10.1097/JCN.0000000000000471
• Title of Journal or Parent Work: Journal of Cardiovascular Nursing
• ISSN: 0889-4655
• Volume: 33
• Issue: 4
• Start Page: 356
• End Page: 362
• Grant/Funding Information: 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.
• Keywords: BREAST-CANCER; WOMEN; congenital heart disease; Cardiovascular System & Cardiology; Cardiac & Cardiovascular Systems; ADOLESCENTS; Nursing; CARE; LIFE; uncertainty; young adults; EXPERIENCES; posttraumatic stress disorder; Life Sciences & Biomedicine; PERSPECTIVE; Science & Technology; HEALTH; MANAGEMENT; CHILDHOOD-CANCER SURVIVORS
• Research Categories: Psychology, General; Health Sciences, Pathology

Abstract

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.