Recruiting children with cancer to research A qualitative interview study exploring ethical values and challenges among Swedish health care professionals and researchers

• Published in: Pediatric blood & cancer Vol. 69; p. s555
• Main Authors: Norbäck, Kajsa, Höglund, Anna, Godskesen, Tove, Frygner-Holm, Sara
• Format: Journal Article
• Language: English
• Published: 2022
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.29952

Background and Aims : Research remains crucial to improve treatment, survival, and quality of life for children with cancer. However, recruitment of children to research raises ethical challenges. This study aimed to explore ethical values and challenges in recruitment of children with cancer to research, among health care professionals and researchers in Sweden. Another aim was to explore health care professionals and researcher’s perceptions of ethical competence in the context of recruiting children to research. Methods : An explorative qualitative design, using semi-structured interviews with seven pediatric oncologists and ten nurses. Interviews were analyzed with inductive qualitative content analysis. Results : The analysis resulted in five categories: Establishing relationships and trust, Meeting informational needs, Acknowledging vulnerability, Balancing roles and interests, and Ensuring ethical competence. Health care professionals and researchers described care-based, research-based and children’s rights-based ethical values in recruitment. Further, they reported ethical challenges related to informed consent, vulnerability, and shared decision-making. They relied on research ethical principles and regulations but also reasoned from ethics of care and virtue ethics perspectives. Conclusions : Health care professionals and researchers are guided by care-and research ethical values, and report ethical challenges in recruitment. There is a need to highlight ethical aspects of pediatric research. Promoting research ethical competence among health care professionals and researchers may reduce moral distress and ensure ethical quality in pediatric research.