Patricia Moreland, PhD, RN, CPNP Assistant Professor, Neil Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia. Sheila Judge Santacroce, PhD, RN, CPNP, FAANP Associate Professor and Beerstecher-Blackwell Distinguished Scholar, University of North Carolina at Chapel Hill School of Nursing.
J Cardiovasc Nurs. 2018 Jul/Aug;33(4):356-362. doi: 10.1097/JCN.0000000000000471.
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).
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.
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.
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.
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.
患有先天性心脏病 (CHD) 的年轻人在以下四个领域存在慢性疾病不确定性：对自身疾病状态的模糊认识；缺乏对疾病、治疗和合并症的了解；医疗保健系统和与医疗保健提供者的关系复杂；以及疾病过程和结果的不可预测性。慢性不确定性与创伤后应激症状 (PTSS) 和创伤后应激障碍 (PTSD) 有关。
本研究旨在探讨患有 CHD 的年轻人如何体验不确定性，并描述 PTSS 与评估和管理过程之间的关系。
采用探索性混合方法设计。从 25 名参与者（19-35 岁）那里收集数据，这些参与者在儿童时期被诊断患有 CHD，能够读写英语，他们通过面访和 Skype 接受访谈。采用加利福尼亚大学洛杉矶分校创伤后应激障碍反应指数收集数据。采用恒定比较法对定性数据进行分析。
在叙述中明显存在不确定性的四个领域。 PTSD 的平均（SD）得分为 31.3（7.7）。6 名参与者符合 PTSD 的标准。叙事分析显示，PTSS 的严重程度与不确定性的评估和管理之间存在关系。患有 PTSD 的参与者使用了包括回避、再体验和过度警觉在内的管理策略。
患有 CHD 的年轻人可能面临慢性不确定性下长期心理压力和 PTSD 的风险。定期监测以识别 PTSS/PTSD 可能是促进治疗依从性和参与医疗保健的一种手段。
