Background Prior to the COVID-19 pandemic, parents of infants in the Neonatal Intensive Care Unit (NICU) frequently reported high levels of stress, uncertainty, and decreased parenting confidence. Early research has demonstrated that parents have had less access to their infants in the hospital due to restrictions on parental presence secondary to the pandemic. It is unknown how parents have perceived their experiences in the NICU since the beginning of the COVID-19 pandemic. The purpose of this study was to describe the lived experience of parents who had an infant in the NICU in the context of the COVID-19 pandemic to inform healthcare providers and policy makers for future development of policies and care planning. Methods The study design was a qualitative description of the impact of the COVID-19 pandemic on parents’ experiences of having an infant in the NICU. Free-text responses to open-ended questions were collected as part of a multi-method study of parents’ experiences of the NICU during the first six months of the pandemic. Participants from the United States were recruited using social media platforms between the months of May and July of 2020. Data were analyzed using a reflexive thematic approach. Findings Free-text responses came from 169 parents from 38 different states in the United States. Three broad themes emerged from the analysis: (1) parents’ NICU experiences during the COVID-19 pandemic were emotionally isolating and overwhelming, (2) policy changes restricting parental presence created disruptions to the family unit and limited family-centered care, and (3) interactions with NICU providers intensified or alleviated emotional distress felt by parents. A unifying theme of experiences of emotional distress attributed to COVID-19 circumstances ran through all three themes. Conclusions Parents of infants in the NICU during the first six months of the COVID-19 pandemic experienced emotional struggles, feelings of isolation, lack of family-centered care, and deep disappointment with system-level decisions. Moving forward, parents need to be considered essential partners in the development of policies concerning care of and access to their infants.

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CONTEXT: Care coordination programs are becoming more widely available for children with complex conditions, yet we lack an understanding of programs available to infants and their benefits. OBJECTIVE: To summarize characteristics and outcomes associated with care coordination programs for infants with complex conditions. DATA SOURCES: Electronic search of Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and Web of Science databases for articles published from 2010 to 2021. STUDY SELECTION: Inclusion criteria consisted of (1) peer-reviewed manuscripts about a care coordination program, (2) infants (birth to 1 year) with complex medical conditions, (3) and reported at least 1 infant, parent, or healthcare utilization outcome. DATA EXTRACTION: Data were extracted on program characteristics and outcomes (eg, infant, parent, and healthcare utilization and cost). Results were summarized by program characteristics and outcomes. RESULTS: The search returned 3189 studies. Twelve unique care coordination programs were identified from 17 studies in the final sample. Seven programs were hospital-based and 5 were outpatient-based. Most programs reported improvements with satisfaction with care, increased interactions with healthcare teams, reductions in infant mortality, and in health service use. A few programs reported increased costs related to staffing. LIMITATIONS: Few care coordination programs were identified specifically for infants and thus studies that did not report age categories (ie, infants) may not have been identified. CONCLUSIONS: Care coordination programs demonstrate cost reductions for health systems, families, and insurers and improvement in quality of care. Efforts to increase the uptake and sustain these beneficial programs need further exploration.

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