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招募癌症儿童参与研究时的伦理问题:瑞典医疗保健专业人员的看法和经验。

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

机构信息

Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Box 564, SE-751 22, Uppsala, Sweden.

Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Box 11189, 100 61, Stockholm, Sweden.

出版信息

BMC Med Ethics. 2023 Mar 14;24(1):23. doi: 10.1186/s12910-023-00901-4.

Abstract

BACKGROUND

Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

METHODS

An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

RESULTS

The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

CONCLUSION

This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

摘要

背景

研究对于改善癌症患儿的治疗效果、生存状况和生活质量至关重要。然而,招募儿童参与研究引发了伦理挑战。本研究旨在从瑞典医护人员的角度和经验出发,探讨和描述与招募癌症儿童参与研究相关的伦理价值观和挑战,同时探讨他们对招募儿童参与研究的研究伦理能力的看法。

方法

采用半结构式访谈的方式对关键信息提供者进行了一项探索性定性研究。共访谈了 7 名医生和 10 名护士。使用归纳性定性内容分析法对访谈进行了分析。

结果

受访者在招募过程中面临的伦理挑战和价值观主要涉及建立关系和信任、满足信息需求、承认脆弱性,以及平衡角色和利益。确保伦理能力被认为很重要,同时强调了人际交往和沟通技巧。

结论

本研究从医护人员的角度提供了关于招募癌症儿童的实证见解,也增进了对招募作为一种关系过程的理解,其中脆弱性、信任和关系建立等方面以及满足信息需求都很重要。研究结果揭示了儿科研究中存在的复杂性,并强调了建立研究伦理能力的重要性,以确保癌症儿童的权益在研究中得到保护。

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Ethics, Poverty and Children's Vulnerability.伦理、贫困与儿童的脆弱性
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