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

doi:10.1101/2025.03.12.25322895

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

2025 · doi:10.1101/2025.03.12.25322895

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⚙ AI-generated summary by claude@2026-07, 2026-07-17 ⓘ

This study explored NICU parents' experiences and identified timely, empathetic communication from trusted researchers, along with clear explanations of risks and altruistic benefits, as key to improving research recruitment.

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⚙ AI-generated deep summary by claude@2026-07, 2026-07-17 · read from full text ⓘ

The study used semi-structured virtual interviews with 24 parents of NICU patients (from three prior study populations) and analyzed transcripts with a grounded theory approach until thematic saturation to identify factors shaping decisions to enroll in NICU research. Key findings were three themes: parents’ intense NICU lived experiences fostering resilience and support, decision-making shaped by prognosis, emotional state, desire to help future families, and perceived risks versus benefits, and recommendations emphasizing timely, empathic communication, sensitivity to parents’ emotions, concise language, and early focus on altruistic goals. The paper’s limitation includes reliance on a small, convenience-based sample of parents who previously participated in specific NICU research studies, which may limit generalizability. The paper does not explicitly discuss endometriosis or adenomyosis; it was included in the corpus via a keyword match in the upstream search index.

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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 Outcome(s) and Measure(s) 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.

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Abstract

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 Outcome(s) and Measure(s) 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. Competing Interest Statement The authors have declared no competing interest. Funding Statement This study was funded by CZI Biohub, CZ Scientific Diversity Leadership Award, NIH R01 NS125404 Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: IRB of University of California, San Francisco gave ethical approval for this work #21-33278 I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability Data produced in the present study, including codebooks, coding themes, and dialogues are available upon reasonable request from researchers. Please send data requests to authors, Mercedes Paredes (mercedes.paredes{at}ucsf.edu) or Melissa Coloma (melissa.coloma{at}ucsf.edu)

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