Hopper Audrey, Crane Stacey
Indianapolis, Indiana, US.
Cizik School of Nursing, University of Texas Health Science Center, Texas, US.
Nurse Res. 2019 Sep 16;27(3):8-13. doi: 10.7748/nr.2019.e1617. Epub 2019 Jul 18.
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.
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.
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.
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.
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.
需要开展研究以改善对患有危及生命疾病的儿童及其父母的护理并减轻他们的痛苦。然而，对于是否能够安全且合乎伦理地进行儿科临终研究存在疑虑，因为这可能会给参与者带来过度负担或无意中造成伤害。
在一项现象学研究中，比较和评估参与者对在两个时间点进行的负担与益处评估的反应，该研究调查了患有危及生命癌症的儿童的父母让孩子参与一期临床试验的经历。
父母报告称参与该研究是有益的，且负担或痛苦最小。在第一个时间点对益处和负担的评估似乎足以了解参与者的经历。
本研究补充了证据，表明可以与已故或患有危及生命疾病儿童的父母安全有效地开展研究。需要进一步研究以评估对他们参与研究的负担和益处进行评估的最有效时间。
在与患有危及生命疾病的人或其家庭成员开展研究时，评估他们参与的负担和益处、了解他们的经历并协助研究开展非常重要。
