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Experiences and preferences for learning about neonatal research: insights from parent interviews

Journal of Perinatology volume 44, pages 404–414 (2024)Cite this article

Subjects

Abstract

Introduction

Parents struggle with being asked to participate in neonatal research. Past work has largely failed to include views of minoritized parents, low-socioeconomic status parents, and those who declined research. We aimed to describe parents’ preferences related to learning about eligibility for neonatal research.

Methods

Qualitative interviews of parents who were asked to enroll their infant in neonatal research. Themes related to parental experiences and preferences for learning about neonatal research were identified using content analysis.

Results

Many parents desired greater involvement of their clinical team. Emotions at the time of recruitment were critically important to parents’ experience, where were deeply impacted by interpersonal relationships with research staff.

Discussion

Increased involvement of the clinical team and greater sensitivity to the stressors around parent and infant conditions at the time of recruitment for neonatal research should be considered by those attempting to improve recruitment for neonatal research.

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Data availability

Data that support the findings of this study are available on request from the corresponding author (EMW). The data are not publicly available due to restrictions on information that could compromise the privacy of research participants. Depending on the nature of the request, approval from the Seattle Children’s Hospital IRB may be required.

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Acknowledgements

We thank the parents who participated in our interviews. We thank our neonatal research collaborators who referred parents to us, including: Matthew W. Harer, MD, Department of Pediatrics, Division of Neonatology, University of Wisconsin School of Medicine and Public Health; Sarah E Kolnik MD MBA, Department of Pediatrics, University of Washington; Dennis E. Mayock, MD, Department of Pediatrics, University of Washington; Mar Romero Lopez, MD, Department of Pediatrics, McGovern Medical School, the University of Texas Health Science Center; Jon E. Tyson, MD, MPH, Professor, Vice Dean for Clinical Research and Healthcare Quality; Michelle Bain Distinguished Professor in Medicine and Public Health; Susan H. Wootton, MD, Pediatric Infectious Diseases, McGovern Medical School at UTHealth. We thank members of Dr. Weiss’s NICU Parent advisory panel for their important contributions in the design of our interview guide and interpretation of our interview findings. We thank members of Dr. Weiss’s K23 expert advisory panel for their conceptual and logistical support. We thank research team members for coding, including: Hannah S. Lewis, BA, Elson S. Floyd College of Medicine, Washington State University. None of the above non-author contributors were provided monetary compensation. We have obtained written permission to include their names in the Acknowledgement section of this manuscript. EMW had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. All results presented in the manuscript are original and have not been published previously.

Funding

This study was supported by National Institutes of Health through the Eunice Kennedy Shriver National Institute of Child Health and Human Development (K23HD103872, supporting Elliott Weiss). Additional support was provided by the National Center for Advancing Translational Sciences of the National Institutes of Health (UL1 TR00231, supporting BSW and KMP).

Author information

Authors and Affiliations

  1. Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children’s Research Institute, Seattle, WA, USA

    Elliott Mark Weiss, Kathryn M. Porter, Ellie Oslin & Benjamin S. Wilfond

  2. Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA

    Elliott Mark Weiss, Mihai Puia-Dumitrescu & Benjamin S. Wilfond

  3. Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA

    Pamela K. Donohue

  4. Department of Population, Family, and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Pamela K. Donohue

  5. Perinatal Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Stephanie L. Merhar

  6. Department of Pediatrics, University of Cincinnati, Cincinnati, OH, USA

    Stephanie L. Merhar

  7. McGovern Medical Center at The University of Texas Health Science Center at Houston, Houston, TX, USA

    Emily Stephens

  8. Children’s Memorial Hermann Hospital, Houston, TX, USA

    Emily Stephens

  9. Counselor Education Department, Portland State University, Portland, OR, USA

    Amanda Mercer

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  1. Elliott Mark Weiss
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Contributions

EMW conceptualized the study, designed the study, carried out the analysis, drafted the initial manuscript, and reviewed and critically revised the manuscript for important intellectual content. KMP designed the data collection instruments, carried out the analysis, and reviewed and critically revised the manuscript for important intellectual content. EO carried out the analysis and reviewed and critically revised the manuscript for important intellectual content. MP-D, PKD, SLM, and ES helped design the data collection instruments, identified potential participants, supported the analysis and interpretation of data, and reviewed and critically revised the manuscript for important intellectual content. AM designed the data collection instruments, recruited for and performed the interviews, carried out the analysis, and reviewed and critically revised the manuscript for important intellectual content. BSW conceptualized the study, designed the study, carried out the analysis, and reviewed and critically revised the manuscript for important intellectual content. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Elliott Mark Weiss.

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This was approved by the Seattle Children’s Hospital Institutional Review Board and was performed in accordance with the Declaration of Helsinki.

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Weiss, E.M., Porter, K.M., Oslin, E. et al. Experiences and preferences for learning about neonatal research: insights from parent interviews. J Perinatol 44, 404–414 (2024). https://doi.org/10.1038/s41372-023-01790-6

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