Needs and experiences of adolescents with congenital heart disease and parents in the transitional process: A qualitative study
Needs and experiences of adolescents with congenital heart disease and parents in the transitional process: A qualitative study
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DOI：
10.1016/j.pedn.2021.03.016
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发表时间：
2021-03-31
影响因子：
2.4
通讯作者：
Van Hecke, Ann
中科院分区：
文献类型：
--
作者：
de Hosson, Michele;Goossens, Peter J. J.;Van Hecke, Ann
目的：大多数先天性心脏病（CHD）患者需要终身心脏随访。过渡到成年和转移到以成人为中心的护理往往是具有挑战性的。我们探讨了经验和需求的青少年与CHD和父母在整个过渡过程中，包括后transferperiod.Design和方法：我们进行了定性研究，根据现象学的方法，重点对青少年与CHD和父母。半结构化的采访进行了患者（n = 9）和父母（n = 12）被转移到成人护理设施后。数据分析采用归纳主题分析法。两个样本的数据收集和分析在第一步中分别进行，之后将结果合并以发现共同的主题。结果：确定了五个共同的主题：1）对离开儿科护理有复杂的感觉; 2）准备和知情; 3）转移责任和角色; 4）在咨询期间陪伴; 5）获得对新医疗服务提供者的信任。结论：患有CHD的青少年和父母表示需要充分的准备和个性化的指导，以减少过渡期间的焦虑和不确定性。这一过程可能会受益于侧重于提高青少年的过渡技能和疾病相关知识，这反过来又可能有助于父母移交责任和适应新的角色。青少年感谢父母在咨询期间的参与，尽管投入较少。最后，过渡协调员和儿科心脏病专家参与的联合转移咨询对于流畅的过渡过程至关重要，特别是在建立新的治疗关系时。(C)2021爱思唯尔公司All rights reserved.
Purpose: Most patients with congenital heart disease (CHD) need lifelong cardiac follow-up. Transitioning to adulthood and transferring to adult-focused care are often challenging. We explored the experiences and needs of adolescents with CHD and parents during the entire transitional process, including the post-transfer period.Design and methods: We performed a qualitative study according to the phenomenological approach, focusing on adolescents with CHD and parents. Semi-structured interviews were carried out with patients (n = 9) and parents (n = 12) after being transferred to adult care facilities. Data were analyzed with inductive thematic analysis. Data collection and -analysis of both samples were done separately in a first step, after which results were merged to discover common themes.Results: Five common themes were identified: 1) Having mixed feelings about leaving pediatric care; 2) Being prepared and informed; 3) Shifting responsibilities and roles; 4) Being accompanied during consultations; and 5) Gaining trust in new healthcare providers.Conclusion: Adolescents with CHD and parents express a need for adequate preparation and personalized guidance to reduce anxiety and uncertainty during transition. The process may benefit from focusing on improving the adolescents transitional skills and disease-related knowledge, which may, in turn, facilitate handing over responsibilities and adapting to new roles by the parents. Adolescents appreciate the presence of parents during the consultation, albeit with reduced input. Finally, a transition coordinator and a joint transfer consultation involving the pediatric cardiologist seem paramount for a fluent transitional process, especially in establishing new treatment relationships. (C) 2021 Elsevier Inc. All rights reserved.