This was a secondary analysis of a prospective study conducted from September 2018 – March 2020, which received approval from the Children’s Wisconsin Institutional Review Board.25,26 It was a single-center study conducted in a level IV 70-single-bed NICU with a fetal consult coordinating center and connected to a delivery hospital. The NICU does not designate any beds as lower or higher acuity. Infants and families had access to 3 social workers, a dedicated psychologist for NICU families, case management, and a March of Dimes family support coordinator. Infant-parent dyads were eligible for the prospective study if the infant had a length of stay of at least 14 days and was anticipating discharge home with their parent.
Parents who participated in the study were asked to fill out a demographic questionnaire as well as questions from the Protocol for Responding to and Assessing Patients’ Assets, Risks and Experiences (PRAPARE) tool. The PRAPARE questionnaire includes national core measures and community priorities, including race and ethnicity, resource needs (food, utilities, clothing, transportation, and housing status), safety (neighborhood and domestic violence), mental health (including presence of emotional distress disorder and stress level), social support (number of adults living at home, amount of weekly social interaction, and number of adults nearby to help care for the infant), education level, employment and household income level, insurance status, and language preference.27 These questionnaires were completed at the bedside on a digital tablet. For any identified concrete needs, which included worry about housing, financial limitations, lack of transportation, or safety, the research coordinator immediately notified the social work team of that need. Housing need was defined as answering “yes” to the question “Are you worried about losing your housing?” or answering, “I don’t have housing” in response to the question “What is your housing situation?”. Safety need was defined as answering “no” to the question “Do you feel physically and emotionally safe where you currently live?” or answering yes to the question “In the past year, have you been afraid of your partner or ex-partner?” Transportation need was defined as answering “yes” to the question “Has a lack of transportation kept you from medical appointments, meetings, work, or from getting things needed for daily living?” Financial need was defined as answering “yes” to the question “In the past year, have you or any family members you live with been unable to get any of the following when it was really needed?” with options including food, utilities, clothing, childcare, medicine or health care, phone or other.
Infant illness variables were collected by manual chart review. These included day of life at interview, gestational age, birth weight, congenital and chromosomal anomalies, days on a ventilator, vasopressor administration, days of life at discharge, corrected gestational age at discharge, respiratory support at discharge, feeding support at discharge, total number of medications at discharge. Post-discharge variables included readmissions to the hospital and emergency department visits within 3 months of discharge, consistent with previously collected study data. Demographic variables were collected by parent report at enrollment and included parent age, race/ethnicity, insurance type, education level, transportation method (own car, rides from friend or family, public transportation), distance from home to hospital, number of adults living at home, income level, and childcare plan (parent or family, daycare or nanny, or unknown plan).
After discharge, a manual chart review of the electronic health record assessed what had been done to address needs identified by parents on the PRAPARE questionnaire, which included concerns regarding housing, finances, transportation, or safety. Social work and nursing documentation were reviewed manually to determine whether new referrals were placed, or resources were provided to address the identified needs. Documentation was categorized into three categories. Screened and referred was defined as documentation that the social work team had screened a family in response to identified needs on or after the date of the PRAPARE questionnaire, and referred to new resources, with no prior notes that already addressed that specific need. Screened was defined as documentation that the social work team had screened a family in response to the identified need, but did not refer to new resources above what had already been provided prior to the date of the study questionnaire. No screen was defined when no documentation of encounter followed the PRAPARE questionnaire.
It was expected that for resource needs including transportation, housing, and financial concerns there would be explicit social work documentation of how the specific need was addressed. Based on discussion with the social work team it was understood that responses to safety concerns would be confidential and are typically not documented explicitly in the patient chart. For these concerns we relied on notes taken by the research coordinator about their follow-up with the social work team during the study period and social work notes documented over the course of the hospitalization.
Statistical Analysis
Infant illness characteristics and parent demographics were compared between those families who reported a resource need and those families who did not report resource needs. Chi-squared or Fisher’s exact tests were used to compare differences in proportions; Kruskal-Wallis tests were used to compare differences in medians. For families who reported a resource need, we used descriptive statistics to illustrate the details of what types of resources were provided, or any context we were able to determine for families who did not receive new resources. STATA version 16.1 (College Station, TX) was used for analyses.