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与患有注意力缺陷多动障碍的孩子一起生活的育儿经历:对定性证据的系统综述

Parenting experiences of living with a child with attention deficit hyperactivity disorder: a systematic review of qualitative evidence.

作者信息

Laugesen Britt, Groenkjaer Mette

机构信息

1 Clinic for Woman and Child Diseases and Urology, Aalborg University Hospital, Denmark2 Clinical Nursing Research Unit, Aalborg University Hospital, Denmark3 School of Nursing, University of Adelaide, Australia.

出版信息

JBI Database System Rev Implement Rep. 2015 Nov;13(11):169-234. doi: 10.11124/jbisrir-2015-2449.

Abstract

BACKGROUND

Attention deficit hyperactivity disorder is the most prevalent mental disorder among children and adolescents worldwide. Parenting a child with attention deficit hyperactivity disorder is challenging and parents find it difficult to raise the child and struggle to get professional support. Research has shown how living with a child with Attention Deficit Hyperactivity Disorder influences the families' daily life. This includes how the parents manage to maintain a bearable family life, supportive or not supportive factors as well as parents' experiences of collaboration with professionals in diverse settings.

OBJECTIVE

The objective of this systematic review was to identify and synthesize the best available evidence on parenting experiences of living with a child with attention deficit hyperactivity disorder, including their experiences of health care and other services.

INCLUSION CRITERIA

This review considered research articles with qualitative data examining the experiences of parents of children with attention deficit hyperactivity disorder. The phenomena of interest were parenting experiences of living with a child with attention deficit hyperactivity disorder, including their experiences of health care and other services, and collaboration with professionals.

SEARCH STRATEGY

Retrospective and prospective searches were conducted in MedNar, ProQuest Dissertations and Theses, PubMed, Embase, PsycINFO and CINAHL. The reference lists of the included research articles were searched for additional studies, and a search for cited citations in Web of Science was conducted.

METHODOLOGICAL QUALITY

Two independent reviewers assessed articles selected for retrieval for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument from the Joanna Briggs Institute, the Qualitative Assessment and Review Instrument.

DATA EXTRACTION

Data were extracted from research articles included in the review using the standardized data extraction tool from the Qualitative Assessment and Review Instrument.

DATA SYNTHESIS

Qualitative research findings were pooled using the Qualitative Assessment and Review Instrument. This involved aggregation and synthesis of findings.

RESULTS

A total of 21 research articles were included in the review. The review process resulted in 129 study findings that were aggregated into 15 categories. The categories generated six synthesized findings: 1) An emotional roller coaster between hope and hopelessness, 2) Mothers as advocates in a battlefield within the system and family, 3) Parental experiences in a crossfire of blame, self-blame and stigmatization, 4) Shuttling between supportive and non-supportive services and professionals, 5) Routines, structures and strategies within everyday life, and 6) Despite multiple challenges, it is not all bad.

CONCLUSIONS

The findings illustrate the complexity of parental experiences that are influenced by guilt, hope, blame, stigmatization, exhaustion, reconciliation and professional collaboration. The findings address the impact attention deficit hyperactivity disorder has on the everyday family, and how parents seem to adapt to their life situation in the process of accepting their child's disorder.

IMPLICATIONS FOR PRACTICE

Health care systems and other professionals need to provide support and understanding to families of children with ADHD.

IMPLICATIONS FOR RESEARCH

Further research is needed to examine how professionals in health care settings can address the individual needs of the families and how future interventions may support the families and improve competences of health professionals.

摘要

背景

注意缺陷多动障碍是全球儿童和青少年中最普遍的精神障碍。养育患有注意缺陷多动障碍的孩子具有挑战性,父母发现抚养孩子困难,并且难以获得专业支持。研究表明,与患有注意缺陷多动障碍的孩子一起生活如何影响家庭日常生活。这包括父母如何设法维持尚可忍受的家庭生活、支持性或非支持性因素,以及父母在不同环境中与专业人员合作的经历。

目的

本系统评价的目的是识别和综合关于与患有注意缺陷多动障碍的孩子一起生活的养育经历的最佳现有证据,包括他们在医疗保健和其他服务方面的经历。

纳入标准

本评价考虑了具有定性数据的研究文章,这些数据考察了患有注意缺陷多动障碍孩子的父母的经历。感兴趣的现象是与患有注意缺陷多动障碍的孩子一起生活的养育经历,包括他们在医疗保健和其他服务方面的经历,以及与专业人员的合作。

检索策略

在医学文摘数据库(MedNar)、ProQuest学位论文数据库、PubMed、Embase、心理学文摘数据库(PsycINFO)和护理学与健康领域数据库(CINAHL)中进行回顾性和前瞻性检索。在纳入评价之前,检索纳入研究文章的参考文献列表以查找其他研究,并在科学引文索引(Web of Science)中进行被引文献检索。

方法学质量

两名独立评审员在使用乔安娜·布里格斯研究所的标准化批判性评价工具“定性评估与评价工具”将选定进行检索的文章纳入评价之前,评估其方法学有效性。

数据提取

使用“定性评估与评价工具”的标准化数据提取工具从纳入评价的研究文章中提取数据。

数据综合

使用“定性评估与评价工具”汇总定性研究结果。这涉及结果的汇总和综合。

结果

本评价共纳入21篇研究文章。评价过程产生了129项研究结果,这些结果被汇总为15个类别。这些类别产生了6项综合结果:1)希望与绝望之间的情绪过山车,2)母亲在系统和家庭内部的战场中作为倡导者,3)父母在指责、自责和污名化的交火中的经历,4)在支持性和非支持性服务及专业人员之间穿梭,5)日常生活中的常规、结构和策略,6)尽管面临多重挑战,但并非全是坏事。

结论

研究结果说明了受内疚、希望、指责、污名化、疲惫、和解及专业合作影响的父母经历的复杂性。研究结果阐述了注意缺陷多动障碍对日常家庭的影响,以及父母在接受孩子疾病的过程中似乎如何适应他们的生活状况。

对实践的启示

医疗保健系统和其他专业人员需要为患有注意力缺陷多动障碍孩子的家庭提供支持和理解。

对研究的启示

需要进一步研究,以考察医疗保健环境中的专业人员如何满足家庭的个体需求,以及未来的干预措施如何支持家庭并提高卫生专业人员的能力。

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