Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
Division of Cardiology, Department of Pediatrics, University of Michigan Mott Children's Hospital, Ann Arbor, MI, USA.
Cardiol Young. 2021 Jun;31(6):957-964. doi: 10.1017/S1047951120004813. Epub 2021 Jan 11.
Amongst patients with CHD, the time of transition to adulthood is associated with lapses in care leading to significant morbidity. The purpose of this study was to identify differences in perceptions between parents and teens in regard to transition readiness.
Responses were collected from 175 teen-parent pairs via the validated CHD Transition Readiness survey and an information request checklist. The survey was distributed via an electronic tablet at a routine clinic visit.
Parents reported a perceived knowledge gap of 29.2% (the percentage of survey items in which a parent believes their teen does not know), compared to teens self-reporting an average of 25.9% of survey items in which they feel deficient (p = 0.01). Agreement was lowest for long-term medical needs, physical activities allowed, insurance, and education. In regard to self-management behaviours, agreement between parent and teen was slight to moderate (weighted κ statistic = 0.18 to 0.51). For self-efficacy, agreement ranged from slight to fair (weighted κ = 0.16 to 0.28). Teens were more likely to request information than their parents (79% versus 65% requesting at least one item) particularly in regard to pregnancy/contraception and insurance.
Parents and teens differ in several key perceptions regarding knowledge, behaviours, and feelings related to the management of heart disease. Specifically, parents perceive a higher knowledge deficit, teens perceive higher self-efficacy, and parents and teens agree that self-management is low.
在患有 CHD 的患者中，向成年期过渡的时期与护理中断有关，导致发病率显著增加。本研究的目的是确定父母和青少年在过渡准备方面的看法差异。
通过经过验证的 CHD 过渡准备调查和信息请求清单，从 175 对青少年-父母对中收集了答复。该调查通过电子平板电脑在常规诊所就诊时分发。
父母报告说他们的孩子存在 29.2%的知识差距（即父母认为孩子不知道的调查项目百分比），而青少年自我报告他们在 25.9%的调查项目中感到缺乏（p=0.01）。在长期医疗需求、允许的身体活动、保险和教育方面，父母和青少年的意见分歧最大。就自我管理行为而言，父母和青少年之间的意见一致程度较低（加权 κ 统计量为 0.18 至 0.51）。在自我效能方面，意见一致程度从轻微到中等（加权 κ=0.16 至 0.28）。青少年比他们的父母更有可能要求信息（79%的青少年要求至少一项信息，而父母为 65%），特别是在怀孕/避孕和保险方面。
父母和青少年在与心脏病管理相关的知识、行为和感觉方面存在几个关键的看法差异。具体来说，父母认为知识缺陷更高，青少年认为自我效能更高，父母和青少年都认为自我管理水平较低。
