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

被引:4
|
作者
Norbaeck, Kajsa [1 ]
Hoeglund, Anna T. [1 ]
Godskesen, Tove [1 ,2 ]
Frygner-Holm, Sara [1 ,3 ]
机构
[1] Ctr Res Ethics & Bioeth, Dept Publ Hlth & Caring Sci, Box 564, S-75122 Uppsala, Sweden
[2] Marie Cederschiold Univ, Palliat Res Ctr, Dept Hlth Care Sci, Box 11189, S-10061 Stockholm, Sweden
[3] Dept Womens & Childrens Hlth, Physiotherapy & Behav Med, Box 593, S-75124 Uppsala, Sweden
关键词
Paediatric oncology; Ethics; Research recruitment; Informed consent; Assent; Shared decision-making; Ethical challenges; Healthcare professionals; Qualitative research; CHILDHOOD-CANCER; DECISION-MAKING; ADOLESCENTS; PARTICIPATION; CHALLENGES; ISSUES;
D O I
10.1186/s12910-023-00901-4
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
BackgroundResearch 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.MethodsAn 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.ResultsThe 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.ConclusionThis 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.
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页数:13
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