History of Neonatology

This study traces the history of neonatology in the United States from the 1960s to the present with particular attention to the ways in which neonatologists developed criteria to make treatment decisions. The investigator will be using oral history interviews as one source for a book that will document developments in the history of neonatology. The investigator will identify potential research subjects through their publications in the field of neonatology and through word of mouth. The investigator will locate them via the contact information provided in their publications or through an internet search.

Study Overview

• Status: Recruiting
• Conditions: Oral History
• Intervention / Treatment: Other: Oral History Interviews

Detailed Description

The investigator will interview individuals who have worked in NICUs [neonatologists, nurses, social workers] to understand how technological changes and changing scientific understanding influenced decision making pertaining to the treatment of infants. The interviews will supplement extensive research of the medical literature and other pertinent publications.

Between the 1960s and the present, we have seen the emergence of medical therapies and technologies developed to treat neonates. Over this time period, there has also been a changing and growing understanding of the long-term impact that medical interventions have on the infants treated as well as on their families. Finally, the demographic characteristics of neonates have also changed as public health crises as well as the development of modern reproductive technologies led to new patient populations and new expectations of what NICUs should or should not achieve. The investigator is interested in the ways in which these changes have led to evolving treatment criteria for neonates and ways in which neonatologists decided when to treat and when treatment was considered futile. The investigator will interview medical professionals who are working or have worked at NICUs about the changes they experienced in their place of work over the course of their careers, the impact that medical technologies and changing patient populations had on considerations about treatment options, and the discussions they had with colleagues and the parents of patients.

There is to date no sustained historical analysis of neonatology. There are anthropological studies of the development of fetal surgery [Casper 1998] as well as Assisted Reproductive Technologies [Spar, 2006; Thompson, 2005]. There are analyses of the social history of particular medical interventions [abortion, birth control, etc.] [Schoen, 1995; Schoen 2005] and the treatment of the fetus [Withycombe, 2019]. And scholars have discussed the value of reproduction and the fetus as it pertains to emerging technologies of genetic testing and the history of disability [Davis, 2019; Herzog, 2018; Lowy, 2018; Maienschein, 2003; Maienschein, 2014; Rapp, 2000; Reagan, 2010.] This study will contribute to our understanding of the ways in which medical professionals have made decisions about life, death, and the quality of life of those being treated.

• Study Type: Observational
• Enrollment (Estimated): 15

Contacts and Locations

• Study Contact: Name: Johanna Schoen, PhD; Phone Number: 7347573376; Email: johanna.schoen@rutgers.edu

Study Locations

• United States
  • New Jersey
    • New Brunswick, New Jersey, United States, 08901
      • Recruiting
      • Rutgers University
      • Contact: Johanna Schoen, PhD; Phone Number: 7347573376; Email: johanna.schoen@rutgers.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

individuals who have worked in NICUs [neonatologists, nurses, social workers] in the 20th and/or early 21st century

Description

Inclusion Criteria:

- individuals who worked or are working in Neonatal Intensive Care Units as neonatologists, pediatricians, nurses, social workers or other pertinent professionals in the medical or counseling field.

Exclusion Criteria:

• N/A

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Information about the history of neonatology	Interviews will be transcribed and indexed by key words pertaining to the history of NICUs	2 hours

Collaborators and Investigators

• Sponsor: Rutgers, The State University of New Jersey
• Investigators: Principal Investigator: Johanna Schoen, PhD, Johanna Schoen

Study record dates

Study Major Dates

• Study Start (Actual): October 4, 2022
• Primary Completion (Estimated): December 1, 2026
• Study Completion (Estimated): December 1, 2028

Study Registration Dates

• First Submitted: December 11, 2023
• First Submitted That Met QC Criteria: December 11, 2023
• First Posted (Actual): December 20, 2023

Study Record Updates

• Last Update Posted (Actual): May 4, 2026
• Last Update Submitted That Met QC Criteria: April 28, 2026
• Last Verified: April 1, 2026

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Health Care Quality, Access, and Evaluation; Investigative Techniques; Epidemiologic Methods; Data Collection; Health Care Evaluation Mechanisms; Quality of Health Care; Public Health; Environment and Public Health; Interviews as Topic
• Other Study ID Numbers: Pro2021000877

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: YES
• IPD Plan Description: If interview subjects agree, I will donate the interviews to the American Academia of Pediatrics which has an archive of oral histories with pediatricians and neonatologists.
• IPD Sharing Time Frame: December 2028 anticipated
• IPD Sharing Access Criteria: anyone who wishes to access the data
• IPD Sharing Supporting Information Type: STUDY_PROTOCOL; ICF

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No