Caregiver perspectives on participation in pediatric neuroimaging research: insights from qualitative focus groups
Year: 2026
Type: article
Abstract: Infant functional and structural magnetic resonance imaging (MRI) is increasingly used in research to identify early emerging biomarkers of neurodevelopmental conditions. Although these methods hold promise for advancing discovery, pediatric MRI research protocols, which often require infants to be scanned during natural sleep, can present a range of challenges for infants and their caregivers. Yet little is known about caregivers' experiences participating in non-clinically indicated MRI studies with their infants. This study explored caregivers' motivations for participating in infant MRI research, their experiences during participation, and their suggestions for improving infant MRI protocols. Three semi-structured focus groups were conducted with caregivers of 0-6-month-old infants who participated in a longitudinal MRI study. Thematic analysis revealed that caregivers were primarily motivated by contributing to science and helping other families. Many experienced performance anxieties while attempting to help their infants fall asleep for a scan, but supportive communication from research staff helped reduce these concerns. Caregivers recommended flexible scheduling, clearer procedural expectations, and pre-visit materials to improve preparedness. These findings underscore the importance of family-centered communication in infant neuroimaging protocols.
Source: Frontiers in Neuroscience
Institutions: Emory University, Children's Healthcare of Atlanta
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,801
Awards: Mapping the Infant Brain Developmental Connectome: Temporally Precise Growth Trajectories of Changing Infant Brain Topology, Pathogenic insight into ASD from the study of neonatal brain-behavior transitions, Mapping the developing infant connectome, Measuring gene-environment transactions to identify sensitive periods for infant social behavior & brain growth, Cycles of Social Contingency in Autism: Pivotal Transitions that Shape Infant Brain-Behavior Development in Human & Model Systems
OpenAlex ID: W7221792071
