Childhood cancer is a significant cause of death among children worldwide, with over 400,000 children diagnosed with cancer each year. Despite progress, survival rates are still below 30% in low-income countries. Clinical trials are conducted to evaluate new treatments for children with cancer. Nursing and psychosocial research is essential to promote the long-term psychosocial well-being of the growing population of childhood cancer survivors.
However, inviting children with cancer to research can raise ethical issues. This includes informed consent and vulnerability considerations, where parents and healthcare professionals (HCPs) play a crucial role. HCPs have dual responsibilities in pediatric oncology, providing care and conducting research, which can cause role and value conflicts in recruitment.
Identifying and monitoring ethical issues in childhood cancer research is essential to promote ethical competence-building among HCPs. In this study, we adopt a broader theoretical perspective, incorporating ethics of care and virtue ethics, to explore ethical challenges in research recruitment of children with cancer from the viewpoint of HCPs.
A recent study published in the BMC Medical Ethics has shed light on the ethical challenges and values associated with recruiting children with cancer for research, as perceived by healthcare professionals in Sweden. The study highlights the importance of research in improving treatment, survival, and quality of life for children with cancer while emphasizing the ethical challenges of recruiting children for research. The study used a qualitative approach involving semi-structured interviews with key informants, including seven physicians and ten nurses. The interviews were analyzed using inductive qualitative content analysis.
The results of the study revealed that the ethical challenges and values related to the recruitment of children for research mainly concerned building relationships and trust with the families of the children, meeting their informational needs, acknowledging their vulnerability, and balancing roles and interests. Ethical competence was identified as crucial, with the respondents highlighting the importance of interpersonal and communication skills.
It highlights the ethical challenges that healthcare professionals (HCPs) face when recruiting children with cancer for research. HCPs in the study reported ethical values and challenges related to trust, power asymmetries, vulnerability, and balancing the roles of parents and children in shared decision-making (SDM). Trust and relationship building with families were described as prerequisites to ethical recruitment, but HCPs also reported mistrust among parents. The tension between fulfilling informed consent requirements and meeting parents’ wishes to abstain from information and consent based on trust was a concern.
Healthcare providers attempted to educate patients’ families by answering their inquiries. The possibility that HCPs may prioritize their own research careers and the pursuit of scientific fame over the interests of their patients sparked ethical concerns regarding the recruiting process. Being a child is not necessarily a disadvantage when it comes to military duty.
HCPs and parents can considerably reduce children’s sensitivity to recruiting by showing an interest in their concerns and views. A cancer diagnosis is widely acknowledged to be heartbreaking news for both children and their families. From the standpoint of children’s rights, HCPs emphasized the importance of continuous resources and compassionate care.
The study’s findings provide empirical insight into recruiting children with cancer for research from the perspective of healthcare professionals. The study also highlights the importance of relationship building, meeting informational needs, and acknowledging vulnerability in recruitment. The complexities associated with pediatric research are also highlighted, underlining the need to build research ethics competence to protect the rights and interests of children with cancer in research.
