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Vital research in premature babies may be being stifled through misplaced fears of causing parents stress by asking them to permit their baby’s entry into multiple trials, the first survey of parents’ views has suggested.
Almost three quarters of parents of babies in a neonatal intensive care unit where research is done were willing for them to be recruited into two studies or more—10% for all available studies. Only 10 parents refused enrolment to any study. An overwhelming proportion (94%) thought that participation would bring more benefit for future babies. Almost three quarters thought that it was good for their baby to be cared for in a hospital doing research and 93% that care within a study would be as good as normal care or better. Unsurprisingly, parents almost unanimously wanted to be included in the decision. The response rate was 88% out of 98 parents (50 mothers and 48 fathers) of 61 babies.
Views were recorded separately by anonymous, self reported questionnaire by parents of babies eligible for two studies or more. The survey ran from December 1999 to January 2001, when seven studies—from local studies to international RCTs—were running.
Neonatal research is vital to benefit care and outcome for preterm babies. There is an ethical argument for asking parents for their baby’s participation in multiple studies, given a finite population available for study. Nevertheless, some researchers and ethics committees are reticent about doing this, and there have been few reports of parents’ opinions.