Parents’ pandemic NICU experience in the United States: a qualitative study

Abstract

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.

Feeding practices in public hospitals’ neonatal intensive care units: An exploration into the ways in which COVID-19 affected the best practice in Gauteng

“…This lack of family involvement affected not only the medical staff but also had a direct impact on the family as well. These feelings were shared by parents of infants in the NICU in both the Netherlands (Meesters et al, 2021 ) and in the United States (Vance et al, 2021 ). Both these studies found that the parents were upset with the decision that the healthcare systems made and that parents needed to be consulted as part of this process.…”

“…Both these studies found that the parents were upset with the decision that the healthcare systems made and that parents needed to be consulted as part of this process. Based on the findings from the study by Meesters et al (2020) and Vance et al ( 2021 ), a more family-centred approach is required when making important decisions that affect the care of vulnerable infants and their families.…”

Experience of parents of preterm infants hospitalized in the Neonatal Intensive Care Unit during the Covid-19 pandemic

“…Os pais vivenciaram momentos de estresse (Mengesha et al, 2022, Erdei et al, 2022, Meesters et al, 2021, problemas emocionais (Holly et al, 2021, Garfield et al, 2021, Bembich et al, 2020, Vance et al, 2021, Mengesha et al, 2022, Adama et al, 2022, Polloni et al, 2021, impactos na amamentação (Garfield et al, 2021, Muniraman et al, 2020 limitação do apoio social após a alta (Galeano et al, 2021), dificuldade de interação com profissionais de saúde (Mengesha et al, 2022), dificuldades de cuidados com o bebê (Adama et al, 2022, Muniraman et al, 2020, Reichert et al, 2022, Polloni et al, 2021, dificuldade em ter contato físico com o bebê (Polloni et al, 2021, Adama et al, 2022 e a interrupção temporária da segunda etapa do Método Canguru (MC) (Reichert 2022). Todos esses preditores prejudicaram o CCF, mas que devem proporcionar uma reflexão acerca da interação e intervenção da família na prática clínica, pois a partir dessas reflexões e princípios, pode-se estabelecer a competência parenteral, bem como, contribuir para que pais e profissionais trabalhem em parceria na unidade neonatal (Corrêa et al, 2015).…”

The Association between NICU Admission and Mental Health Diagnoses among Commercially Insured Postpartum Women in the US, 2010–2018

“…Hospitalization, such as having an infant in the neonatal intensive care unit (NICU), can become a stressful life event and a source of trauma for some [ 10 , 11 ]. Postpartum women who have an infant in NICU care may experience an increased risk of developing MH conditions [ 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 ]. However, studies exploring the association of NICU hospitalizations and maternal MH have not used large national samples.…”

“…Limited literature evaluates the relationship between NICU hospitalization and symptoms of depression and anxiety among postpartum women. In addition, the existing literature uses cross-sectional designs [ 12 , 13 , 14 , 17 , 18 ], small sample sizes [ 12 , 13 , 14 , 17 , 18 , 19 ], a focus on a single region [ 12 , 13 , 14 , 15 , 16 , 17 , 18 ], and qualitative methodologies [ 15 ]. Additionally, it does not typically control for antenatal MH conditions [ 10 , 17 , 18 ].…”