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理解印度尼西亚一项关于儿童下呼吸道感染研究中的家长同意与信任:来自定性研究的见解

Understanding parental consent and trust in paediatric LRTI research: insights from a qualitative study in Indonesia.

作者信息

Ciptaningtyas Vincentia Rizke, Sumekar Tanjung Ayu, Fauzia Lathifa Putry, de Mast Quirijn, de Jonge Marinus Isaäk, Margawati Ani

机构信息

Department of Microbiology, Faculty of Medicine, Universitas Diponegoro, Jl. Prof. H. Soedarto, Semarang, 50275, SH, Tembalang, Semarang, Indonesia.

Diponegoro National Hospital, Semarang, Indonesia.

出版信息

BMC Public Health. 2025 Aug 13;25(1):2749. doi: 10.1186/s12889-025-24039-7.

DOI:10.1186/s12889-025-24039-7
PMID:40804386
Abstract

BACKGROUND

Scientific research is essential to reduce the burden of paediatric lower respiratory tract infections (LRTI), one of the leading causes of death in children under five years of age in Indonesia. However, there is limited knowledge about Indonesian parents' perceptions of research on paediatric LRTI. This study aimed to investigate Indonesian parents' perspectives on paediatric LRTI research based on their contextual factors and identify their recommendations for improved recruitment approaches.

METHODS

A qualitative cross-sectional study was conducted from May 2022 to February 2024 using semi-structured interviews with thirteen parents from Semarang, Indonesia. The data were analysed through a content analysis approach.

RESULTS

Parents considered research as essential and beneficial to society. However, their willingness to grant permission for their children's participation in a study was contingent on specific conditions. Concerns such as potential emotional or physical harm, interference with children's personal decisions, confinement, fear of being treated as experimental subjects, and misunderstandings about health research acted as deterrents, impeding parental consent for involvement in LRTI research. If parents assess their child as sufficiently mature, they may reconsider their decision. To improve recruitment, parents recommended effective communication, comprehensive explanations in informed consent procedures, a personalised approach, incentives, and institutional support.

CONCLUSIONS

Conducting research on LRTI in children in Indonesia involving specimen collection requires researchers to address parental knowledge regarding the research context, provide comprehensive explanations about potential risks, and offer reassurance on research-related injuries. This necessitates personalised approaches to informed consent, fostering trust, and enhancing recruitment. Emphasising anticipated benefits and securing robust institutional support are essential aspects for researchers. It is important here that researchers emphasise the benefit of enrolling children and maintain transparency and balance by outlining potential risks and uncertainties associated with the research. Only then can parents make informed decisions about participating based on a comprehensive understanding of potential benefits and risks.

摘要

背景

科学研究对于减轻小儿下呼吸道感染(LRTI)的负担至关重要,小儿下呼吸道感染是印度尼西亚五岁以下儿童的主要死因之一。然而,对于印度尼西亚父母对小儿LRTI研究的看法了解有限。本研究旨在根据印度尼西亚父母的背景因素调查他们对小儿LRTI研究的看法,并确定他们对改进招募方法的建议。

方法

2022年5月至2024年2月进行了一项定性横断面研究,对来自印度尼西亚三宝垄的13名父母进行了半结构化访谈。通过内容分析方法对数据进行了分析。

结果

父母认为研究对社会至关重要且有益。然而,他们是否愿意允许孩子参与研究取决于特定条件。诸如潜在的情感或身体伤害、干扰孩子的个人决定、限制、害怕被当作实验对象以及对健康研究的误解等担忧起到了阻碍作用,妨碍了父母同意孩子参与LRTI研究。如果父母认为孩子足够成熟,他们可能会重新考虑自己的决定。为了改进招募工作,父母建议进行有效沟通、在知情同意程序中提供全面解释、采用个性化方法、给予激励以及提供机构支持。

结论

在印度尼西亚对涉及标本采集的儿童LRTI进行研究,要求研究人员解决父母对研究背景的了解问题,提供关于潜在风险的全面解释,并就与研究相关的伤害提供保证。这需要采用个性化的知情同意方法,建立信任并加强招募工作。强调预期益处并获得有力的机构支持是研究人员的重要方面。在此,研究人员强调让孩子参与研究的益处并通过概述与研究相关的潜在风险和不确定性来保持透明度和平衡非常重要。只有这样,父母才能在全面了解潜在益处和风险的基础上就是否参与做出明智的决定。

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