对先天性心脏病患儿及其主要照顾者所经历的心理社会后果的考察：范围综述方案。
An examination of the psychosocial consequences experienced by children and adolescents living with congenital heart disease and their primary caregivers: a scoping review protocol.
机构信息
College of Health Sciences, Faculty of Nursing, University of Alberta, Edmonton Clinic Health Academy, University of Alberta, 3-141, 11405-87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Pediatric Cardiology, Stollery Children's Hospital, Walter C. Mackenzie Health Sciences Centre, Unit 4C3/4C4, 8440-112 Street, Edmonton, AB, T6G 2B7, Canada.
出版信息
Syst Rev. 2023 Jun 2;12(1):90. doi: 10.1186/s13643-023-02249-7.
BACKGROUND
The chronicity of congenital heart disease (CHD) comes with significant psychosocial consequences for both children and adolescents living with CHD and their primary caregivers. Children and adolescents living with CHD undergo multiple traumatizing invasive surgical and medical procedures, struggle with disabilities resulting from their CHD, face unfair scrutiny and marginalization, and are at risk for mental health issues. Primary caregivers of children and adolescents living with CHD deal with increased stress, fear, anxiety, depression, and financial burden. The overarching objectives of this scoping review are to (1) determine the current state of knowledge on negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers in high-income countries and (2) inform research aimed at developing interventions in high-income countries to decrease the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers.
METHODS
Databases and grey literature searched will include MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, Scopus, ProQuest Theses and Dissertations, and Google advanced search. Citation mining of included studies and relevant review articles will be completed. Studies will be screened by title and abstract and then full text by two independent reviewers, using pre-defined inclusion and exclusion criteria. Quality analysis will be conducted on all included studies by two reviewers using MMAT Version 2018. Studies will not be excluded due to quality assessment. Data from all eligible studies will be independently extracted by the two reviewers and verified by consensus. Data will be presented and synthesized in evidence tables to examine potential patterns.
DISCUSSION
The results of this review will provide recognition of the psychosocial impact of CHD and its treatments on children and adolescents living with CHD and their primary caregivers. It will also highlight interventions that have been developed to decrease these psychosocial consequences. The results from this review will inform a future integrated knowledge translation study by the first author aimed at decreasing one or more of the negative psychosocial consequences experienced by children or adolescents living with CHD and their primary caregivers.
SYSTEMATIC REVIEW REGISTRATION
Open Science Framework (OSF) Registration, https://doi.org/10.17605/OSF.IO/ZXYGW.
背景
先天性心脏病（CHD）的慢性病程会给患有 CHD 的儿童和青少年及其主要照顾者带来重大的心理社会后果。患有 CHD 的儿童和青少年经历了多次创伤性的侵入性手术和医疗程序，与 CHD 导致的残疾作斗争，面临不公平的审查和边缘化，并且存在心理健康问题的风险。患有 CHD 的儿童和青少年的主要照顾者面临着压力、恐惧、焦虑、抑郁和经济负担的增加。本研究范围综述的总体目标是：（1）确定高收入国家中患有 CHD 的儿童和青少年及其主要照顾者经历的负面心理社会后果的现有知识状况；（2）为旨在减少患有 CHD 的儿童和青少年及其主要照顾者经历的负面心理社会后果的高收入国家的干预措施提供信息。
方法
将搜索数据库和灰色文献，包括 MEDLINE、CINAHL、EMBASE、PsycINFO、CENTRAL、Scopus、ProQuest 论文和学位论文以及 Google 高级搜索。将对纳入研究和相关综述文章进行引文挖掘。研究将由两名独立审查员根据标题和摘要进行筛选，然后根据预先确定的纳入和排除标准进行全文筛选。两名审查员将使用 MMAT 版本 2018 对所有纳入的研究进行质量分析。不会因质量评估而排除研究。两名审查员将独立提取所有合格研究的数据，并通过共识进行验证。将以证据表的形式呈现和综合数据，以检查潜在的模式。
讨论
该综述的结果将认识到 CHD 及其治疗对患有 CHD 的儿童和青少年及其主要照顾者的心理社会影响。它还将强调为减少这些心理社会后果而开发的干预措施。该综述的结果将为第一作者的未来综合知识转化研究提供信息，旨在减少患有 CHD 的儿童或青少年及其主要照顾者经历的一种或多种负面心理社会后果。
系统评价注册
开放科学框架（OSF）注册，https://doi.org/10.17605/OSF.IO/ZXYGW。
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