NICU Voices: Understanding Parent Perspectives of Research in the Neonatal Intensive Care Unit.

Abstract

Importance: Neonatal intensive care units (NICUs) care for a vulnerable population with suboptimal research recruitment rates. Understanding NICU parents' motivations and recommendations may improve recruitment efforts.

Objective: Identify key factors influencing NICU parents' decisions to enroll their newborns in research and gather recommendations to enhance engagement.

Design: Semi-structured interviews were conducted with 24 parents from three NICU study populations: NSR-RISE, TRANSIT-CHD, and PROMPT. Using a grounded theory approach, data was analyzed prior to developing hypotheses, allowing themes to emerge organically during data analysis. Transcripts were coded through multiple rounds of data analysis until thematic saturation was reached.

Setting: Interviews occurred virtually with previous research participants at UCSF hospitals.

Participants: 65 parents of NICU patients were invited; 24 participated. Inclusion criteria included 1) parent age older than 18 years, 2) NICU admission history, 3) prior participation in NSR-RISE, TRANSIT-CHD, or PROMPT, and 4) child aged 18-36 months at time of interview.

Main outcomes and measures: Using a grounded theory approach, data was analyzed prior to developing hypotheses, allowing themes to emerge organically during data analysis.

Results: Parents of 8 NSR-RISE, 8 TRANSIT-CHD, and 8 PROMPT-enrolled neonates participated. Three primary themes emerged: 1) parents' lived experiences during an emotionally intense NICU period fostered parental resilience and newfound support systems, 2) decision-making regarding NICU research participation included factors such as prognosis, emotional state, desire to aid future families, and perceived risks versus benefits, and 3) recommendations for improving NICU research recruitment, such as timely, empathic communication from trusted researchers, sensitivity to emotions, concise language, and early emphasis of altruistic goals.

Conclusions and relevance: Altruism is a key motivator for NICU parents' research participation. Recruitment strategies should emphasize empathetic, well-timed communication from trusted persons, clearly addressing risks and altruistic outcomes. Sensitivity to the emotionally charged NICU environment is essential for improving engagement and enhancing the NICU experience.