DECLINE-2 Determining Caregivers' Logic In Saying No to Research

The study aims to investigate parental (and/or legally authorized caregiver) motivations for choosing to participate, or not, in research for their child by using qualitative semi-structured interviews. All participants must be greater than 18 years of age and identified as a parent or legally authorized caregiver allowed to provide informed consent for research studies. Eligible participants will be identified among those who decline consent for participation in a PICU research study, with a query of "whether it would be acceptable if someone came back in 2-3 days to discuss with you why you declined research?" Those who respond yes will be approached in that timeframe (irrespective of whether still in PICU, but not if discharged home), assessed for appropriateness of timing, and interviewed if consent granted.
Participants will then be consented for a planned in-person 30-60 minute semi-structured interview. Enrollment will continue until thematic saturation is attained, which we estimate to be approximately 20-40 participants. The interviews will be audio recorded and later transcribed and analyzed via qualitative methods of code development and thematic categorization with constant comparative methods until thematic saturation is reached.