Evaluation of the burdens and benefits of participation in research by parents of children with life-limiting illnesses
evidence and practice    

Evaluation of the burdens and benefits of participation in research by parents of children with life-limiting illnesses

Audrey Hopper Indiana University School of Nursing, Indianapolis, Indiana, US
Stacey Crane Assistant professor, Cizik School of Nursing, University of Texas Health Science Center, Texas, US

Background Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants.

Aim To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents’ experiences of having a child with life-limiting cancer participate in a Phase I clinical trial.

Discussion Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants’ experiences.

Conclusion This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research.

Implications for practice It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.

Nurse Researcher. 27, 3, 8-13. doi: 10.7748/nr.2019.e1617



Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

Conflict of interest

The authors would like to thank the National Institute of Nursing Research, the National Cancer Institute, the American Cancer Society, the Oncology Nursing Society Foundation and the Midwest Nursing Research Society for their support. The content of this article is solely the responsibility of the authors and does not necessarily represent the views of these organisations


To reuse this article or for information about reprints and permissions, please contact permissions@rcni.com

Write for us

For information about writing for RCNi journals, contact writeforus@rcni.com

For author guidelines, go to rcni.com/write-for-nurse-researcher