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What do parents think about enrolling their premature babies in several research studies?
1Neonatal Services, Royal Women's Hospital, Melbourne, VictoriaC 3053, Australia. colin.morley@rwh.org.au
Insights
Most parents of premature infants are willing to enroll their babies in multiple neonatal research studies. Parents believe research participation improves future infant care and want to be involved in decisions.
Area of Science:
- Neonatal research
- Pediatric clinical trials
- Parental consent
Background:
- Neonatal intensive care units (NICUs) often conduct research involving premature infants.
- Enrolling vulnerable infants in multiple studies raises ethical considerations regarding parental decision-making and potential burdens.
- Understanding parental perspectives is crucial for ethical and effective research participation.
Purpose of the Study:
- To investigate parental opinions on enrolling premature infants in multiple research studies shortly after birth.
- To assess parental willingness to participate in neonatal research and identify any concerns.
Main Methods:
- A questionnaire was administered to parents of premature infants in the NICU.
- Parents independently completed the survey after being invited to join two to seven research studies.
- Data were collected from 50 mothers and 42 fathers.
Main Results:
- Nearly three-quarters of parents viewed research-intensive hospitals favorably.
- Most parents (93%) believed their baby would receive equivalent or superior care in a study.
- Over 74% were willing to enroll their infant in two or more studies, with 98% desiring involvement in the decision-making process.
Conclusions:
- A majority of parents are supportive of neonatal research and willing to enroll their infants in multiple studies.
- Parental concerns about the number of studies were minimal, with most believing participation benefits future infant care.
- Healthcare professionals should recognize parental support for neonatal research and involve them in consent processes.
Objective:
To investigate parents' opinions about enrolling their premature baby into several research studies in the few days after birth.
Methodology:
A questionnaire was given to parents of premature babies in the neonatal intensive care unit who had been invited to join several studies (two to seven).
Results:
All 50 mothers and 42 of 48 fathers completed the questionnaire independently; 28% had been asked to join two studies, 32% three, 24% four, 14% five, and 2% six studies. There were 61 babies with mean (SD) gestational age 26.9 (1.6) weeks and birth weight 877 (249) g. Nearly three quarters (71%) of the parents thought it was very good for their baby to be in a hospital that was carrying out a lot of research. Most (93%) thought that their baby would get the same or better care in a study. Only 15% thought their baby was too small for research studies. Almost all (98%) wanted to be involved in the decision about their baby joining a study. Only 22% were worried about the number of studies; 10% would not enroll their baby in any studies, but 74% were willing for their baby to join two or more studies, and 10% would enroll in all the studies. Most (94%) believed that their baby's participation would improve care of future babies.
Conclusions:
Most of these parents were willing to join several studies. The majority were not worried about their baby participating in the studies. The profession needs to be aware that parents are supportive of neonatal research and participation in multiple studies.
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