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Parental perception of time and decision-making in neonatal research
Insights
Providing parents adequate time to decide improves research participation for neonates with congenital heart disease. Parents were satisfied with decisions, even with time constraints, highlighting the need to optimize the consent process.
Area of Science:
- Neonatal research ethics
- Pediatric cardiology
- Clinical trial recruitment
Background:
- Parental consent is crucial for neonatal research participation.
- Congenital heart disease (CHD) necessitates complex research decisions for neonates.
- Time constraints can impact parental decision-making in research settings.
Purpose of the Study:
- To evaluate how the time available for decision-making affects parental consent for neonatal research.
- To identify factors influencing parental decisions regarding research participation for infants with CHD.
Main Methods:
- Interviews with 37 parents of 19 neonates with CHD eligible for genetic, heart rate variability (HRV), or MRI studies.
- Parents were asked about decision-making time adequacy and reasons.
- Statistical analysis (Fisher's exact tests) and qualitative thematic analysis were employed.
Main Results:
- Parents reporting adequate time were more likely to consent to participation (genetics P<0.01, HRV P=0.05, MRI P<0.01).
- Inadequate time was linked to insufficient time for informed choice (n=10), logistical concerns (n=8), absent spouse (n=7), and limited discussion time (n=4).
Conclusions:
- Parental perception of sufficient decision time positively correlates with research enrollment willingness.
- Parents reported satisfaction with their decisions regardless of time constraints.
- Optimizing the parental permission process time can enhance neonatal research participation.
Objective:
To assess the impact of time on parental decision-making for research participation for neonates with congenital heart disease.
Study Design:
Interviews were conducted with 37 parents of 19 neonates with congenital heart disease who were eligible for three different studies: genetic etiology of congenital heart disease, heart rate variability (HRV) and structural and functional cranial magnetic resonance imaging (MRI). All parents were asked the same questions: (1) 'Did you have adequate time to make a decision about research?' and (2) 'Why?' Differences between groups (reporting adequate and inadequate time) were evaluated using Fisher's exact tests; central themes were examined using qualitative analysis.
Result:
Of those parents who reported having adequate time to make their decision (22 of 37), the majority chose to participate when compared to those who reported inadequate time (genetics study, P<0.01; HRV, P=0.05; MRI, P<0.01). For the parents reporting inadequate time, consistent themes emerged: insufficient time to make an educated choice (n=10), consideration of study logistics (n=8), spouse not present at the time of decision (n=7) and insufficient time to discuss the studies (n=4).
Conclusion:
Parental perception of adequate time to decide about research participation was associated with parental willingness to enroll the child in research. Despite any time limitations, parents were satisfied with the decisions they made. Optimizing the time available for the parental permission process could enhance research participation in the neonatal period.
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