Division of Neurology, Department of Psychology, The Hospital for Sick Children.
Department of Pediatrics, The University of Toronto.
J Pediatr Psychol. 2019 Sep 1;44(8):924-936. doi: 10.1093/jpepsy/jsz055.
Using qualitative and quantitative methods, the current cross-sectional study examined parents' experiences at the time of their child's diagnosis, what they thought helped their child recover, barriers to support, and identified needs for future models of care.
The sample included 26 parents (22 mothers, 3 fathers, and 1 mother/father pair) of children with CHD, ranging in age between 6 months and 4 years with a mean age of 2 years.
Qualitative results were organized around five themes: (a) They (medical team) saved my child's life, (b) My child is going to be okay, (c) Not out of the woods, (d) Optimizing support for my child and myself, and (e) What still gets in the way. Parents uniformly expressed a need for greater mental health support for their children as well as programs to improve parents' skill and confidence, with no difference between age groups (< 2 years and > 2 years of age). Common barriers to service included distance and time off work.
Parents' experiences informed both acute and long term implications following CHD diagnoses, and highlight current gaps in mental health care. Direction for clinical care and improved intervention opportunities are discussed.
本横断面研究采用定性和定量方法，探讨了患儿父母在孩子确诊时的经历、他们认为有助于孩子康复的因素、支持方面的障碍以及未来护理模式的需求。
研究对象为 26 名患有 CHD 的儿童的父母（22 名母亲、3 名父亲和 1 对父母），年龄在 6 个月至 4 岁之间，平均年龄为 2 岁。
定性结果围绕以下五个主题展开：(a) 他们（医疗团队）救了我的孩子，(b) 我的孩子会没事的，(c) 尚未脱离险境，(d) 优化对孩子和自己的支持，以及 (e) 仍有阻碍。父母普遍表示，他们需要为孩子提供更多的心理健康支持，以及改善父母技能和信心的项目，而不同年龄段（<2 岁和>2 岁）之间没有差异。服务的常见障碍包括距离和请假。
父母的经历既影响了 CHD 诊断后的急性后果，也影响了长期后果，突显了当前心理健康护理方面的差距。讨论了临床护理和改善干预机会的方向。
