School of Physical and Occupational Therapy, McGill University, Montreal, Canada.
Research Institute of the McGill University Health Centre, Montreal, Canada.
Child Care Health Dev. 2023 Mar;49(2):258-267. doi: 10.1111/cch.13037. Epub 2022 Aug 25.
Youth with congenital heart disease (CHD) are at high risk for a range of developmental impairments that become evident at different times across childhood and adolescence. This study aimed to explore perspectives of youth with CHD with respect to their developmental follow-up across childhood.
Interpretive description was used as a methodological approach for this qualitative study. Youth aged 12-22 years with CHD requiring open-heart surgery before 2 years of age and who had received health services in Canada since birth were enrolled.
Ten youth with CHD, two males and eight females, aged 13-22 years (mean 19.8) participated in this study. With higher social and academic demands as well as increased level of autonomy associated with older age, some youth faced new challenges that they had not encountered as children. Youth with CHD identified four aspects of the continuum of care as needing to be changed to better respond to their needs. First, the format of developmental follow-up needs to be adapted to their unique challenges. Second, resources must be more easily accessible throughout childhood and adolescence. Third, planning for transition to adult care is essential to ensure continuity of services. Finally, they identified that the school system is an essential component of the continuum of care.
Adolescents and young adults with CHD are at high risk of developing physical, academic and psychosocial challenges; however, timely identification of challenges does not appear to be optimal across domains and transition points, from the perspective of the youth themselves. Youth with CHD reported not having the resources and supports they required to optimize their functioning. Our findings suggest that several approaches could be adopted to enhance identification and outcomes to address the limitations of current Canadian practices.
患有先天性心脏病（CHD）的年轻人存在一系列发育障碍的高风险，这些障碍在儿童期和青春期的不同时间显现出来。本研究旨在探讨患有 CHD 的年轻人对其儿童期全程发育随访的看法。
本定性研究采用解释性描述作为一种方法学方法。招募了年龄在 12-22 岁之间、2 岁前接受过开胸手术且自出生以来在加拿大接受过医疗服务的患有 CHD 的年轻人。
本研究纳入了 10 名患有 CHD 的年轻人，其中 2 名男性，8 名女性，年龄 13-22 岁（平均 19.8 岁）。随着年龄的增长，社交和学业需求增加，自主性增强，一些年轻人面临着他们小时候没有遇到过的新挑战。患有 CHD 的年轻人确定了需要改变以更好地满足他们需求的连续护理的四个方面。首先，发育随访的形式需要适应他们的独特挑战。其次，资源必须在整个儿童期和青春期更容易获得。第三，规划向成人护理的过渡对于确保服务的连续性至关重要。最后，他们确定学校系统是连续护理的重要组成部分。
患有 CHD 的青少年和年轻人面临着身体、学术和心理社会挑战的高风险；然而，从年轻人自身的角度来看，各领域和过渡点的挑战识别似乎并不理想。患有 CHD 的年轻人表示他们没有获得优化其功能所需的资源和支持。我们的研究结果表明，可以采用几种方法来增强识别和结果，以解决加拿大当前实践的局限性。
