Children with cancer in research: Clinical and ethical aspects of recruitment

Children’s research participation is crucial to improving treatment and survival for children with cancer. But informed consent processes are ethically complicated, partly due to children’s limited autonomy and the decision-making taking place within the context of the family in a time of psychological crisis. Reconciling care and research obligations can also cause conflicts regarding roles as well as moral distress among nurses and doctors.

By assessing ethical issues from different stakeholder- and ethical perspectives, we aim to further the knowledge on how to ethically engage with children and their families in the context of clinical research recruitment.  

This PhD project is funded by the Swedish Childhood Cancer Foundation (Barncancerfonden) and is estimated to run from 2020-2024.

Aims

The overarching aim of the project is to further the understanding of ethical and clinical aspects of recruiting children with cancer to clinical studies in the Swedish context. This includes:

  • Exploring health care professionals' clinical experiences and moral perspectives on paediatric recruitment
  • Exploring ethical review board members moral perspectives and experiences of ethical vetting of paediatric studies
  • Exploring research experiences of children treated for cancer and their parents
  • Expanding understanding of context-specific ethical and clinical aspects by integrating empirical findings and normative ethical theories, and yielding clinically relevant guidance for pediatric recruitment

Methods

Empirical methods (qualitative interviews, and cross-sectional survey data) will be used in combination with theoretical ethical analysis.

Contact

Supervisors

Last modified: 2021-11-25