Parent Experience of Neonatal Hospitalization During the COVID-19 Pandemic

Abstract

Rationale: Prior to the COVID-19 pandemic, parental presence was encouraged through unrestricted visitation and family-centered care practices in neonatal intensive care units (NICU). Parental caregiving is essential to an infant's healthy development, especially during hospitalization. Parental presence encourages attachment, improves parental well-being and confidence, enhances management of illness, and promotes continuity of care. By examining parental experience of hospitalization during the pandemic, we can better understand parental needs during neonatal hospitalization. Therefore, our objective was to describe the impact of neonatal hospitalization during the COVID-19 pandemic from the parent perspective Methods: We conducted an online survey to explore parent's experiences of neonatal hospitalization during the first 6 months of the COVID-19 pandemic. We invited parents to participate via social media through parental support groups. Inclusion criteria included having an infant admitted to a NICU between February 1-July 31, 2020. We used a thematic analytic approach to identify shared patterns of how parents experienced their child's NICU stay. Free text responses from five open-ended questions covering topics such as visitation experience, transition home, and clinician interactions were analyzed using NVivo 11 qualitative data analysis software. Results: Of the 178 survey respondents, 169 answered one or more of the open-ended questions. We focused on examining continuities and discontinuities of parents' perspectives of neonatal hospitalization within the context of COVID-19. Through this lens, we identified three broad themes: 1) Parents' NICU experiences during COVID-19 were emotionally isolating and overwhelming, 2) Restrictive visitation policies split the family unit, and 3) Interactions with NICU staff exacerbated or mitigated the emotional strain on parents (figure 1). To quote a parent, “hospital policies [were] not in touch with the reality of families, making the impossible pain of [having] a baby in the NICU even more impossible.” Overall, parents of infants in the NICU experienced and expressed feelings of painful separation, disconnection, isolation, splitting, and alienation. Parents desired more empathy from providers and hospital administrators. Conclusions: Parental distress and disconnection were exacerbated amidst neonatal hospitalization during COVID-19. Perceived lack-of empathy and restrictive policies intensified parental distress related to lack of support, separation and isolation. Parents expressed a strong desire to engage in decision making and advocated for the value of connection and community during these challenging times. NICU clinicians need to support parents with empathy and connection to mitigate parental distress. (Table Presented).