目的:本系统综述确定了定量评估先天性心脏病(CHD)儿童家庭心理社会适应和结果的工具,并评估了工具心理测量学。
方法:遵循系统评价和荟萃分析指南的首选报告项目和前瞻性注册方案,电子数据库(CINAHL,Embase,PubMed/MEDLINE,PsycINFO,和SCOPUS)从成立到2021年6月20日,都在搜索以英文发表的同行评审文章,报告关于父母/照顾者心理社会结果的定量数据,兄弟姐妹,或家庭系统。提取了仪器特征和心理计量学,并采用了基于Consensus的健康测量指标选择标准(COSMIN)标准来评估仪器质量。描述性统计和叙事综合用于分析。
结果:总体而言,报告26个国家107个不同样本的108篇文章被纳入。在这些文章中,40种评估心理功能或痛苦的工具,12评估应对,11评估了生活结构的质量,10评估了父母的压力/照顾者的负担,10评估了家庭功能/影响,10评估压力评估,5评估兄弟姐妹的社会心理结果,和2评估夫妻关系满意度/紧张。将COSMIN标准应用于英语工具的原始工具开发文章/手册的可用数据(n=54),67%的人在内容有效性方面获得了积极的属性证据评级,内部一致性为39%,4%的测试-重测可靠性,响应性(纵向效度)为9%。
结论:在用于评估CHD儿童家庭的心理社会适应和结果的工具中,研究差异很大。由强大的关键心理测量学指导的仪器选择,增加心理测量报告,关键建议包括开发“工具包”方法和全面的CHD特定家庭工具。
This systematic review identified instruments quantitatively assessing psychosocial adaptation and outcomes in families of children with congenital heart disease (CHD) and evaluated instrument psychometrics.
Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and a prospectively registered protocol, electronic databases (CINAHL, Embase, PubMed/MEDLINE, PsycINFO, and SCOPUS) were searched from inception until June 20, 2021 for peer-reviewed articles published in English, reporting quantitative data on psychosocial outcomes among parents/caregivers, siblings, or family system. Instrument characteristics and psychometrics were extracted, and adapted COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria were applied to assess instrument quality. Descriptive statistics and narrative synthesis were used for analysis.
Overall, 108 articles reporting on 107 distinct samples across 26 countries met inclusion. Across those articles, 40 instruments assessed psychological functioning or distress, 12 assessed coping, 11 assessed quality of life constructs, 10 assessed parenting stress/caregiver burden, 10 assessed family functioning/impact, 10 assessed stress appraisal, 5 assessed sibling psychosocial outcomes, and 2 assessed couple relationship satisfaction/strain. Applying COSMIN criteria to available data on original instrument development articles/manuals for English language instruments (n = 54), 67% scored a positive property evidence rating for content validity, 39% for internal consistency, 4% for test-retest reliability, and 9% for responsiveness (longitudinal validity).
Studies vary widely in instruments used to assess psychosocial adaptation and outcomes among families of children with CHD. Instrument selection informed by robust key psychometrics, increased psychometric reporting, development of both a \"toolkit\" approach and a comprehensive CHD-specific family instrument are among key recommendations.