Pandemic visitor policies: Parent reactions and policy implications.

Abstract

In 2020, neonatal intensive care units (NICUs) modified visitation policies as a preventative measure to reduce SARS-CoV-2 transmission. Many NICUs limited the number of persons who could visit or denied visitation altogether.1 Visitation recommendations were sparse at the beginning of the pandemic, with the American Academy of Pediatrics recently providing visitor recommendations. Specific guidance for limiting visitors was only for SARS-CoV-2-positive patients, which recommended one essential visitor. In accordance with the recommendations, hospitals were encouraged to implement their own detailed policies. A critical challenge in searching for the best way to value family presence while maintaining public health safety is consideration of ethical and practical implications of pandemic-related visitor policies. Knowing that infants and children are embedded in families, and caregiver presence is a critical component of hospital care, the potential impact of limited family presence (i.e. visitation restrictions) for hospitalised children could be profound.2 Even so, many policies are still in place that limit family presence, and there is a paucity of data describing parental reactions to pandemic visitor policies. While this analysis focuses on parent reactions from the NICU, there are important implications for all hospitalised children. Therefore, the purpose of this study was to report parental concerns and reactions to pandemic-related visitor policies. Using a national, cross-sectional descriptive design, we collected parent comments to a free-text question, “Please share your visitation experience in the NICU as it relates to the COVID-19 pandemic.” Parents, mothers and fathers, of the same infant, were eligible and encouraged to participate if they had an infant admitted to a NICU between February and July 2020. They were recruited via social media and completed the anonymous online survey, once, using REDCap. Further details about study are discussed elsewhere.3 For this analysis, free-text responses to the above question were analysed using directed content analysis in NVivo 11 software. Coding was conducted independently by the first two authors using previous research to inform the initial coding scheme, including identifying the number of times a policy changed. Coding refinement and analytic decisions were agreed upon by both coders. The study was deemed exempt by the University of Michigan Institutional Review Board. The sample included 155 parent responses (6 fathers and 149 mothers) about pandemic-related visitor policies from 36 states in the United States. Parents were on average 30 years old, married (72%) and white (75%). Prematurity (72%) was the most common reason for admission to the NICU, with an average hospital stay of 38 days, and most parents (46%) travelled less than 30 min to visit the NICU. There were reports of additional temporal restrictions in the policies such as allowing parents to change who visits on a daily (7%) or weekly basis (1%), limiting the number of visits each day or limiting hours (e.g. 2- or 4-h visits) (11%). Several parents (19%) reported on their experience with multiple changes to their hospital visitor policies (Table 1). “Then when the policy changed to switching weekly, you are asking a father who is working to take time off during a pandemic where layoffs are common and a mother to not see her child for 7 days” (Mother of three from Louisiana) “It was very emotional and physically draining. Not to mention it was very hard on my husband not being able to help me and not being able to see his baby.” (Mother of two from Arizona) “It went from whoever I wanted to see my child to just my husband and I were allowed, to just me. My husband didn't see his child for over a month, which feels incredibly wrong. How can someone deny a parent access to their own child?” (Mother of two from Texas) “My husband was only allowed to be with our twins for 2 weeks until the enforce the policy for only one parent. Our twins were in the NICU for 50 days. I had to go through most the NICU experiences alone.” (Mother of one from California) “Parents are not and should NOT be considered visitors. We are essential for the baby's health and all of us need to be together as a family. We also need to be present to advocate for our baby. Mothers and babies should be considered one unit, and mothers do need their partners for support…I will keep emphasizing the psychological toll this policy took on us” (Father of two from Florida) “The stress of separation was so excessive that neither of us could even enjoy our baby, fragile as she was” (Mother of one from Michigan) When our baby was delivered at 27 weeks the visitation policy had been changed to one visitor a day, soon changed to one visitor from 10–6, then it went to one visitor for 1 h a day, then to one visitor for 30 min and eventually no visitors at all. Each visit was upsetting because I knew I had limited time with my baby. Once they went to no visitors, I didn't see my child for days and they told us we couldn't see him until he was discharged. (Mother of one from Louisiana) We were not allowed to visit as a family. Many of the programs and classes once offered are no longer able to be held. (Mother of one from Pennsylvania) Based on the analysis of parental comments regarding pandemic visitor policies, parent concerns were summarised in two main categories: (1) the unintended consequences of visitor policies; and (2) devaluation of their essential role as a parent. Parent comments addressed concerns from both the parent who was able to visit and the parent who may have been excluded (i.e. fathers). The following exemplary quotes emphasise parental concerns related to visitation. Unintended Consequences. “Parents cannot visit together. When you child is so young and struggling it helps having support and the policy doesn't allow that.” (Father from Michigan). “Being the only one here has been exhausting and to not be able to switch out with the other parent has left little to no time to recharge.” (Mother from New Jersey). Parents Essential Role. “The hospital as an institution put in place policies meant for the greater good, and yet seemingly not considering something that nurses and doctors have long practiced and preached: that family support of a baby in the neonatal intensive care unit is, in fact, essential, but hospital policies made that very difficult.” (Mother from Texas). “Hospital policies not in touch with lives reality of families making the impossible pain of baby in NICU even more impossible” (Mother from Washington). In sum, parents commented that these policies viewed them in an atomised way that did not acknowledge the family as a whole unit, which resulted in exacerbated feelings of disconnection, isolation, and excluded from care by such policies. While well-intentioned, pandemic-related visitor policies did not align with the US Centers for Disease Control and Prevention (CDC) evolving guidance for masking, and social distance and the neuroscientific evidence encouraging unlimited parental presence. It is well known that parental presence improves parental well-being, bonding, and confidence, and infant development. Pandemic visitor policies accentuated emotional suffering of parents, who had a child hospitalised in a NICU, and separated them from their support teams. Even limiting visitation to “one parent” exacerbated the already known stressors associated with a neonatal hospitalisation. In response, three professional organisations published a consensus statement advocating for parents' rights as essential.4 Many in the healthcare community remain concerned about the long-lasting consequences of pandemic-related visitor policies, especially for neonatal and paediatric patients. Long-term data evaluating the impact of limited parental presence on infant development and family outcomes is needed. To date, many pandemic policies are still in place in hospitals across the United States,1 which raises ethical concerns as well. These policies often undermine established family-centred care practices and pose potential long-term psychological and medical risks to paediatric patients and their families.5 It is vital that revision to these policies be considered so they realign with family-affirming care. Acknowledging and supporting the essential role of parental presence should be a priority when making policies to ensure safety and to provide quality care for all neonatal and paediatric patients. No external funding was provided in support of this manuscript. There are no conflicts of interest to disclose from any authors on this work.