Article Text
Abstract
Objective Recent legislation mandating the inclusion of children in clinical trials has resulted in an increase in the number of children participating in research. We reviewed the literature regarding the reasons parents chose to accept or decline an invitation to enrol their children in clinical research.
Methods We searched for qualitative studies, written in the English language that considered the experiences of parents who had been invited to enrol their children in research. SCOPUS and Web of Knowledge electronic databases and reference lists of retrieved articles and review papers were searched. Retrieved articles were synthesised using the narrative synthesis method.
Results 16 qualitative studies exploring the experiences of parents living in five countries whose children had a range of health conditions of varying severity were included. The health status of the child appeared to influence parents' reasons for participation. Parents whose children had life threatening conditions often considered they had no choice but to participate and many welcomed the innovation offered through research participation. Such parents also viewed the risks of research less negatively than those whose children were healthy or in the stable stage of a chronic condition. This raises questions regarding the voluntariness of informed consent by such parents.
Conclusions A tailored approach is needed when discussing research participation with parents of eligible children. While parents of healthy children may be more open to discussions of altruism, those whose children have life threatening illnesses should be given adequate information about the alternatives to, and risks of, research participation.
- Applied and professional ethics
- informed consent
- minors/parental consent
- research on special populations
- newborn and minors
Statistics from Altmetric.com
Footnotes
Funding HF and AB received financial support from the Department of Health via the NIHR Comprehensive Biomedical Research Centre award to Guy's and St Thomas' NHS Foundation Trust in partnership with King's College London and King's College Hospital NHS Foundation Trust.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Read the full text or download the PDF:
Other content recommended for you
- Children in health research: a matter of trust
- Split views among parents regarding children’s right to decide about participation in research: a questionnaire survey
- Hearing the voices of children: self-reported information on children's experiences during research procedures: a study protocol
- Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children
- When to start paediatric testing of the adult HIV cure research agenda?
- The science of paediatrics, child health research, and the Royal College of Paediatrics and Child Health
- Parent experience of advance care planning: reconstructing meaning – grounded theory
- Promoting research for children
- Assent for children's participation in research is incoherent and wrong
- Deception of children in research