围产期孩子被诊断为唐氏综合征时父母及准父母的经历：一项定性系统评价方案

Experiences of parents and prospective parents when receiving a diagnosis of Down syndrome for their child in the perinatal period: a qualitative systematic review protocol.

作者信息

Robinette Bethany, Palokas Michelle, Christian Robin, Hinton Elizabeth

机构信息

School of Nursing, University of Mississippi Medical Center, Jackson, MS, USA.

Mississippi Centre for Evidence Based Practice: A JBI Centre of Excellence, University of Mississippi School of Nursing, Jackson, MS, USA.

出版信息

JBI Evid Synth. 2022 Dec 1;20(12):2995-3000. doi: 10.11124/JBIES-21-00291.

DOI:10.11124/JBIES-21-00291

PMID:36065936

Abstract

OBJECTIVE

The objective of this review is to synthesize qualitative evidence regarding the experiences of parents and prospective parents when receiving a diagnosis of Down syndrome for their child in the perinatal period.

INTRODUCTION

Increased awareness of parental experiences when receiving a Down syndrome diagnosis for their child may help health care professionals provide the parental support needed to promote the best possible outcomes for these children.

INCLUSION CRITERIA

The participants for this review are the parents and prospective parents of a child with Down syndrome. The phenomenon of interest is parents' and prospective parents' experiences when receiving the diagnosis of Down syndrome for their child in the perinatal period. Experiences of prospective parents, parents whose children are living or deceased, and those who terminated a pregnancy because of the diagnosis will be included.

METHODS

This review will follow JBI methodology for qualitative reviews. The databases to be searched include Academic Search Premier, AccessPediatrics, Health Source: Nursing/Academic Edition, MEDLINE, CINAHL, Scopus, PsycINFO, and Web of Science. Sources of unpublished studies and gray literature will include ProQuest Dissertations and Theses Sciences and Engineering Collection, MedNar, National Association for Down Syndrome, Down Syndrome International, and WorldWideScience. Studies will be critically appraised by 2 independent reviewers. All studies, regardless of methodological quality, will be included. Data will be extracted by 2 independent reviewers. Findings will be pooled using the meta-aggregation approach. Where textual pooling is not possible, the findings will be presented narratively. The final synthesized findings will be graded according to the ConQual approach.

SYSTEMATIC REVIEW REGISTRATION NUMBER

PROSPERO CRD42021250813.

摘要

目的

本综述的目的是综合关于父母及准父母在围产期收到孩子唐氏综合征诊断时的经历的定性证据。

引言

提高对父母在收到孩子唐氏综合征诊断时经历的认识，可能有助于医疗保健专业人员提供所需的父母支持，以促进这些孩子获得尽可能好的结果。

纳入标准

本综述的参与者是唐氏综合征患儿的父母和准父母。感兴趣的现象是父母及准父母在围产期收到孩子唐氏综合征诊断时的经历。准父母、孩子在世或已故的父母，以及因诊断而终止妊娠的父母的经历都将被纳入。

方法

本综述将遵循JBI定性综述方法。要检索的数据库包括学术搜索高级版、AccessPediatrics、健康源：护理/学术版、医学索引、护理学与健康领域数据库、Scopus、心理学文摘数据库和科学引文索引。未发表研究和灰色文献的来源将包括ProQuest学位论文与科学工程学论文集、医学文摘数据库、全国唐氏综合征协会、国际唐氏综合征协会和世界科学数据库。研究将由2名独立评审员进行严格评估。所有研究，无论方法学质量如何，都将被纳入。数据将由2名独立评审员提取。研究结果将采用元聚合方法进行汇总。如果无法进行文本汇总，研究结果将以叙述形式呈现。最终的综合研究结果将根据ConQual方法进行分级。