Perspectives on the Management of Children in a Biocontainment Unit: Report of the NETEC Pediatric Workgroup

Abstract

During the outbreak of Ebola virus disease that struck West Africa during 2014-2016, a small handful of expatriate patients were evacuated to specialized high-level containment care units, or biocontainment units, in the United States and Western Europe. Given the lower mortality rate (18% versus 40% for those treated in Africa) among these patients, it is likely that high-level containment care will be used in the future with increasing frequency. It is also likely that children infected with Ebola and other highly hazardous communicable diseases will someday require such care. The National Ebola Training and Education Center convened a pediatric workgroup to consider the unique and problematic issues posed by these potential child patients. We report here the results of those discussions.

It is likely that high-level containment care will be used in the future with increasing frequency and that children infected with Ebola and other highly hazardous communicable diseases will someday require such care. The National Ebola Training and Education Center convened a pediatric workgroup to consider the unique and problematic issues posed by these potential child patients.

High-level containment care, often referred to as biocontainment, can be differentiated from traditional means of hospital infection prevention and control by its use of a broad array of administrative and engineering controls and security measures, as well as by the use of unique staffing models, specialized training, specific waste handling procedures, robust personal protective equipment ensembles, and myriad other safety features not typically found in “conventional” isolation settings.

An evolving appreciation of the need for specialized high-level containment care capability has taken place over the past several decades, and efforts to construct dedicated high-level containment care units trace their beginnings to a confluence of events in 1969.¹ Among these events was the first lunar landing, which, because of concern for the potential importation of microbes from space, prompted the construction of the first biocontainment units at the Johnson Manned Spaceflight Center in Houston and at a military facility at Fort Detrick, MD. These efforts ultimately led to the opening of civilian high-level containment care units at Emory University and the University of Nebraska. The wisdom of employing such units in the management of patients infected with highly hazardous special pathogens was validated during the 2014-2016 outbreak of Ebola virus disease (EVD), when expatriate patients were evacuated from West Africa and successfully cared for in these 2 facilities, while additional patients were successfully managed at New York City Health and Hospitals–Bellevue and at the National Institutes of Health in units adapted to provide high-level containment care.

In response to the 2014-2016 Ebola outbreak, the Department of Health and Human Services' (HHS) Office of the Assistant Secretary for Preparedness and Response (ASPR) and the Centers for Disease Control and Prevention (CDC) funded the development of the National Ebola Training and Education Center (NETEC)^* with the goal of improving the national capacity and capability for managing patients infected with Ebola and other special pathogens.² As a component of this effort, CDC and ASPR developed a 3-tiered system of hospitals designed to care for patients with certain highly hazardous communicable diseases. Under this system, high-level containment care capability would be developed in tertiary care facilities known as Ebola treatment centers (ETCs). Approximately 55 facilities initially applied for such designation and funding;³ among them are 10 categorized as regional referral centers by HHS (1 in each of its 10 geographic regions).⁴

Although no pediatric patients with confirmed EVD were cared for in high-level containment care units in the United States, children did constitute 18% of EVD patients in Guinea during the 2014-2016 outbreak,⁵ and high-level containment care units must be prepared to care for pediatric patients in the future. In addition, at least 89 children were evaluated in the United States for possible EVD during the first 6 months of the outbreak.⁶ Planning for the provision of such care, however, presents some significant challenges, with the question of parental presence at the bedside of an ill child among the most problematic. The American Academy of Pediatrics (AAP) recently addressed this issue,⁷ providing guidance applicable to the initial evaluation of a symptomatic child, as well as to the inpatient care of a child with confirmed or suspected infection (person under investigation, or PUI). While the authors of this guidance concluded that “the optimal way to minimize risk is to limit contact,”⁷ some allowed for parental presence under certain circumstances, recommending that parents (or other caregivers) should be evaluated for their ability to “follow instructions” (eg, regarding donning and doffing of personal protective equipment) and advocating for the exclusion of parents at increased risk for poor outcomes (such as pregnant women).

Despite the AAP guidance, parental presence remains a controversial issue among biocontainment experts and high-level containment care personnel, with many stating that they would prohibit the entry of parents^† into a high-level containment care unit under nearly all circumstances. Others, however, have raised the possibility of altering this exclusionary approach based on the infectious agent in question, the clinical status of the child (“wet,” or patients with significant vomiting, diarrhea, or hemorrhage, versus “dry”), their age or developmental status, and other factors.

Beyond the issue of parental presence, several other vexing issues confront high-level containment care units preparing for the eventuality of pediatric patients. Among these are concerns about breastfeeding, cohorting (ie, permitting infected children to room with their infected parents or siblings), staffing and support, and school and social reintegration. In this article, we attempt to advance the work of the AAP and others^7-9 and further our understanding regarding these challenging issues. The scope of this document is limited to children with proven infections caused by special pathogens who are cared for in high-level containment care units; the guidance published herein is not intended to apply to persons under investigation at emergency departments, primary care clinics, or other assessment facilities.

Methods

We established the NETEC Pediatric Workgroup during the annual NETEC summit meeting (Atlanta, June 2017) where representatives of the 10 regional Ebola treatment centers, along with CDC and ASPR officials and other stakeholders, gathered to discuss best practices and work on solving common problems. The workgroup consisted of summit attendees who self-identified as possessing an interest in pediatric care delivery. No attempt was made to limit the number of participants from any one facility nor to ensure that each center was equally represented. Discussion was open and not for attribution, with a goal of achieving consensus wherever possible. Topics were grouped into 7 categories: parental presence, cohorting, breastfeeding, staffing, staff protection, child life, and reintegration. We present here the results of those discussions, noting the work group's perspectives, highlighting those areas where agreement could not be reached, and providing rationale where appropriate.

Results and Discussion

Parental Presence

As noted above, among the most challenging problems one might encounter when admitting a child to a high-level containment care unit is the question of parental presence. Pediatric medicine in much of the developed world is built on the notion of family-centered care, wherein the patient-child and his or her family derive mutual benefit from the close interactions in the healthcare environment between parent and child.⁸ In many cases, parents are thus encouraged to actively participate in the care of their hospitalized child. In resource-poor settings, such participation is often mandatory, with parents or other family members being relied on to feed, dress, toilet, nurse, and comfort the child.

In any case, it is critical that facilities providing high-level containment care have carefully crafted preexisting policies that address the issue of parental presence in the room of a child with a disease caused by a special pathogen. Recognizing that the care of pediatric patients in a high-level containment care unit involves significant deviations from normal pediatric care paradigms, these policies should specify the conditions (if any) under which parents would be allowed to enter the high-level containment care unit and/or the patient's room. The policies should ideally specify indications for entry to the high-level containment care unit and patient room stratified by age, developmental status, medical condition, and pathogen. Further, the policies should specify when modifications might be permitted and the process by which standard policies and modifications will be communicated to parents and staff. The communication of predetermined high-level containment care unit policies limiting physical presence is likely to prove especially beneficial in situations where parents may not be comfortable interacting with their highly contagious and critically ill child but may feel self-induced or familial pressure to be involved in the care.

Many of our working group members agreed that the risks posed by the presence of a parent in the room of a child with EVD outweighed the very real benefits. We concurred with Mehrotra and colleagues⁸ that pathogens such as Ebola (as well as other potentially severe viral hemorrhagic fevers such as Marburg virus disease, Lassa fever, and Crimean-Congo hemorrhagic fever) “fundamentally alter our risk benefit calculus.”⁸

Some participants felt that the limitations related to parental presence should apply to airborne diseases of high consequence, such as severe acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS), and novel influenza, as well as to viral hemorrhagic fevers. Others noted that the relevant personal protective equipment (PPE) required for protection against airborne transmission was not overly burdensome and that CDC guidelines already allow for the use of N-95 respirators by family members and visitors. This latter group opined that they might permit parents at the bedside of a child with SARS, MERS, or novel influenza under certain circumstances and with appropriate parental training.

There were also some workgroup participants who felt that a prohibition on parental presence might be relaxed somewhat based on the availability of countermeasures. For example, in the case of pneumonic plague, where prophylactic antibiotics might be administered to a parent, some felt that parental presence might be considered. Others disagreed, noting that the period of contagion would typically be rather short in such instances and that the child might be rendered noncontagious and moved to a conventional care setting (where parents could visit) within a reasonable time frame. Similarly, some felt that a parent of a patient-child with smallpox might be permitted to visit on condition that they receive smallpox vaccine. Others noted that, by the time parental immunity could be assured, the child might well be recovering. Finally, participants voiced ethical concerns over the possibility that parents could be unduly pressured or even coerced into receiving an investigational vaccine as a condition of seeing their child.

While some felt that the blanket restrictions on parental presence might thus be relaxed in certain select circumstances, the workgroup concluded that, in most cases, parents and family members should be excluded from the room of a child being cared for in a high-level containment care unit. This was felt to be necessary to protect both parents and healthcare workers. In addition to the potential risks posed to the parent, the intense training that would be required for parents to properly don, doff, and otherwise safely use PPE would not be practical. Moreover, even a well-trained and cooperative parent presents a potential danger to nursing personnel who must, in addition to attending to the child in their care, now monitor the parent to guard against inadvertent breaks in infection control technique. Such monitoring is particularly difficult in the confined quarters of most high-level containment care units, where inadvertent snagging of PPE on equipment might go undetected by nursing personnel intensely occupied with the needs of a very ill child. Furthermore, the presence of additional personnel in this confined setting may, in itself, increase the risk of falls, dropping of equipment, and other inadvertent infection control breaches.

Numerous other factors contribute to our cautious stance against parental presence. Parents, once in the child's room, might avoid disclosing symptoms or breaches in protocol, fearing that they will then be excluded from the room. Moreover, the parent who then requires quarantine (or, worse, isolation should they contract the disease in question) following a breach loses the ability to care for other family members, thereby markedly increasing stress on the family. Finally, while nursing personnel are typically in PPE for 2- to 4-hour stretches, parents, if permitted entry to a child's room, are likely to be in protective ensembles for extended periods of time, increasing the burden on them and on the high-level containment care staff who must monitor them, and increasing the risk of fatigue-induced mistakes. A summary of additional ethical considerations surrounding the issue of parental presence has been published elsewhere.⁹

While it was noted that institutional bioethics committees may not always be nimble enough to respond to questions regarding parental entry (which often require real-time answers), it was suggested that a standing panel of experts in ethics, infection control, child life, pediatrics, and other disciplines might prove useful in guiding decision making. High-level containment care units that anticipate caring for children should consider chartering such a panel, which could be convened upon activation of the high-level containment care in preparation for the receipt of a child-patient.

In lieu of parental presence in the high-level containment care unit, the workgroup wholeheartedly endorses active tele-parenting and encourages the use of robust technology solutions as an admittedly inferior substitute for live parenting. The group recommends that parents be provided a quiet dedicated room near (but not in) the high-level containment care unit and given access to telemonitoring equipment that allows them near-continuous access to their child in the high-level containment care unit. Moreover, in recognition of the possibility that patients may have been repatriated from a foreign nation or that English may not be their native language, the workgroup recognized the need for parents to have ready access to trained medical interpreters. These interpreters should also be available to the child via tele-technology when parents are absent and should have a sufficient familiarity with the medical environment to alleviate fear and trauma in a child who is not otherwise able to comprehend his or her situation and the instructions of caregivers.

Cohorting

A primary (but certainly not the only) reason for barring a parent from an infected child's room is the fear that the parent will contract the disease from the child. Such fears are moot if the parent is already known to be infected, a likely possibility in the case of many diseases warranting high-level containment care. During previous EVD outbreaks, children accounted for 9% to 18% of cases, despite constituting roughly 50% of the population of afflicted African nations.^4,10,11 This diminished risk may be due, in large part, to a lesser likelihood that children will serve as caregivers to their sick parents, an important risk factor in EVD transmission. Conversely, when children do become infected, the probability is high that an adult household member is also ill.¹²

Such realities raise the possibility of managing the infected child in the same room as the adult relative (or an infected sibling). While resource constraints may require such a strategy in developing nations,¹³ we recommend against it in most cases in a modern high-level containment care unit. Concerns were voiced by workgroup members that patients may well experience varying severity of disease or progress along differing disease time-courses, making cohorting problematic in terms of clinical management and psychological well-being. We noted, for example, that a clinically improving parent witnessing the deterioration or demise of his or her child (or vice versa) could pose potential risks to themselves as well as high-level containment care unit personnel.

Persons under investigation constitute a separate issue, as families might present for care as a group, having already been in close contact for extended periods. It was acknowledged that temporary cohorting may be appropriate or unavoidable under such circumstances. Cohorting might also be acceptable when multiple family members are clearly recovering but not yet cleared for discharge. We further advise that an infant who is a person under investigation and who is born to an infected mother should be treated, in most cases, as infected (until such time as infection can be ruled out). Fathers and other exposed or unexposed uninfected potential caretakers should generally be excluded from contact with such a newborn. Finally, we advocate that high-level containment care units anticipating the care of children should have written policies addressing the issue of cohorting.

Breastfeeding

Ebola virus is secreted in the breast milk of lactating mothers with EVD and remains present for some time after recovery.¹⁴ For this reason, the CDC recommends that “when safe alternatives to breastfeeding and infant care exist, a mother with confirmed or suspected Ebola virus infection should not have close contact with her infant (including breastfeeding) to reduce the risk of transmitting Ebola virus to her child.”¹⁵ A separate report,¹⁶ however, noted that amplified risk to a child could be attributed to close proximity to a sick mother, with highest risk occurring if the mother subsequently died. In this study, breastfeeding posed no additional risk beyond that of the direct exposure.

Nonetheless, the workgroup reasoned that, in a high-level containment care unit located in a resource-rich nation, breastfeeding by mothers with EVD constituted a potential hazard and should be avoided. They did note that donor breast milk, if available, may be an acceptable substitute. And while the workgroup supports breast pumping by infected mothers for relief of engorgement, it was noted that their expressed breast milk must be treated as a category A infectious substance.

The group further noted that such guidelines were specific to EVD (and presumably to other severe viral hemorrhagic fevers) and that such restrictions might be individualized and potentially relaxed when dealing with other pathogens. In the case of SARS, for example, virus has not been isolated from breast milk, although antibodies to the virus are found in recovering mothers,¹⁷ raising the possibility that breastfeeding may actually be beneficial in the later stages of maternal disease. Finally, the group affirmed the importance of written policies that address breastfeeding and the handling of expressed breast milk.

Staffing

While there was universal agreement among workgroup participants that pediatric and neonatal nursing staff must be intimately involved in the care of children in high-level containment care units, no consensus was reached regarding a preferred staffing model. In this regard, the group expressed no preference for (1) caring for children primarily by adult BCU/ICU/ER personnel with pediatric/neonatal nurses and therapists in a support role versus (2) caring for children primarily by pediatric/neonatal personnel with BCU/ICU/ER staff in a support role. It was noted, however, that staffing ratios might need to exceed the 3 to 6 staff per patient model used with adults managed in US high-level containment care units in 2014, owing to the need for a healthcare worker to remain in a child's room at all times and the extra manpower potentially required to hold, comfort, or distract children undergoing procedures.

Staff Protection

While the selection of PPE ensembles necessary to protect the healthcare worker against contact, droplet, and airborne pathogens in conventional settings is rather well codified, the same cannot be said about the high-level containment care setting. Acknowledging this limitation, however, it is likely that the PPE employed when caring for most children under high-level containment care conditions would not differ significantly from that used with adult patients. In certain circumstances, however, high-level containment care staff may elect to supplement their protective ensemble by adding, for example, a cloth surgical gown or sleeves in order to provide an extra measure of protection against the remote possibility that a flailing toddler might rip or displace their underlying PPE. We note that the benefits of such a strategy are unproven and must be weighed against the added heat stress associated with extra clothing and the role this heat stress might play in further limiting the amount of time a healthcare worker might spend in PPE.

Moreover, while we acknowledge that chemical sedation interferes with play therapy and other meaningful therapeutic interactions between patients and their families and caregivers, we nonetheless envision that such sedation may be a critical adjunct in the management of a frightened, flailing toddler or child and may be necessary to ensure both staff and patient safety. Similarly, we acknowledge that physical restraint, while controversial,¹⁸ may occasionally be necessary in the high-level containment care setting. Its use should, however, be minimized, and it should be employed only in conjunction with other modalities such as chemical sedation, behavioral management, and parental assurance (via teletechnology, for example). If physical restraint must be used, this use should be in keeping with institutional and organizational regulatory guidance.

Child Life

Child life specialists “help infants, children, youth and families cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement.”¹⁹ Few conditions and few settings would likely engender as much stress and uncertainty for a child as being confined in a high-level containment care unit, suffering from a life-threatening disease, without the comfort of parents and family. Yet, the very situation that makes parental presence problematic poses similar risks for child life specialists. While we contend that such specialists should be kept from a child's room in most cases, we do allow that exceptions may be made when such specialists are fully integrated into the high-level containment care unit care team and participate in regular training alongside this team. We also recognize the tremendous therapeutic value of play²⁰ and the role of the child life professional in fostering an environment where such play might take place. We thus recommend that child life specialists be intimately involved in the care of children hospitalized in high-level containment care units, even when they cannot be physically present in the unit. Such involvement can be accomplished through the use of video teleconferencing or by providing advice on play therapy to nurses and other members of the high-level containment care unit team.

Toys are a critical adjunct in therapeutic play and may assist a child in understanding and coping with his or her confinement in a high-level containment care unit. Texas Children's Hospital, for example, has designed a teddy bear dressed in PPE like that worn by caregivers.²¹ Nonetheless, the presence of toys in a high-level containment care unit is potentially problematic, and, while the workgroup encouraged their use, they also opined that toys, in most cases, should be destroyed when the child is discharged. It was noted, however, that, in theory, toys that can be autoclaved might be returned to a child. In practice, this might prove problematic in that it necessitates an in-suite or on-campus autoclave and dedicated sterilization cycle. An alternative solution might involve duplicate toys—1 teddy bear is destroyed, for example, while an identical duplicate is “discharged” home with the child-patient.

Reintegration

Children hospitalized with EVD (and, presumably, with diseases caused by other special pathogens) face myriad physical, emotional, and psychosocial stressors. In addition to suffering the direct effects of the illness itself, with its lengthy hospitalization, painful medical procedures, and prolonged recovery periods, survivors are often stigmatized by family members, friends, schoolmates, teachers, and others fearing contagion. Prolonged school absence, in addition to its deleterious effect on learning and psychosocial development, may contribute to a sense of alienation on the part of the child-patient and his or her classmates. Flashbacks, commonly reported among adult survivors of EVD,²² may exacerbate feelings of helplessness, hopelessness, and estrangement. The death of parents or siblings, common among surviving African children with EVD, would be expected to greatly exacerbate these problems.

For all of these reasons, a coordinated approach is paramount in managing a child's recovery and transition from a high-level containment care unit to a recuperative setting and ultimately to complete family, school, and social reintegration. Workgroup participants were unanimous in their support of the notion that planning for this reintegration should begin as early as possible during a child's hospitalization. These efforts can be greatly aided by child life providers, social workers, and child psychologists/psychiatrists and should be guided by communications professionals and hospital public affairs officers.

Conclusion

The NETEC Pediatric Workgroup has wrestled with many of the unique challenges and uncertainties surrounding the management of children infected with special pathogens and has attempted here to provide perspectives and considerations that will benefit providers caring for such children. Future workgroup meetings should focus on further developing these recommendations, should attempt to achieve consensus where possible, and should address additional problematic issues related to pediatric high-level containment care.

With that said, we realize that controversies will always remain and that many problems cannot be addressed adequately in the absence of experience in the actual management of such children and diseases. Although we hope never to have the need to acquire such experience, recent events indicate that highly hazardous communicable diseases will continue to occur, new diseases will emerge, global travel will bring them to our shores, and children will almost certainly remain at risk.

Footnotes

References

Cieslak

, Kortepeter

. A brief history of biocontainment. Ebola virus disease: issues in preparedness and clinical care. Curr Treat Options Infect Dis, 2016; 8:251-258.

Cieslak

, Herstein

, Kortepeter

. Communicable diseases and emerging pathogens: the past, present, and future of high-level containment care. In: Preparing for Bioemergencies: A Guide for Healthcare Facilities. In: Hewlett

, Murthy

ARK

, eds. Preparing for Bioemergencies: A Guide for Healthcare Facilities. New York: Springer; 2018: ch. 1.

Centers for Disease Control and Prevention. Interim guidance for U.S. hospital preparedness for patients under investigation (PUIs) or with confirmed Ebola virus disease (EVD): a framework for a tiered approach. Updated August 28, 2015. http://www.cdc.gov/vhf/ebola/healthcare-us/preparing/hospitals.html. Accessed December 12, 2018.

Herstein

, Biddinger

, Kraft

, et al. Current capabilities and capacity of Ebola treatment centers in the United States. Infect Control Hosp Epidemiol, 2016; 37(3):313-318.

Peacock

, Uyeki

, Rasmussen

. Ebola virus disease and children: what pediatric health care professionals need to know. JAMA Pediatr, 2014; 168(12):1087-1088.

Goodman

, Meites

, Anstey

, et al. Clinical inquiries received by CDC regarding suspected Ebola virus disease in children—United States, July 9, 2014-January 4, 2015. MMWR Morb Mortal Wkly Rep, 2015; 64(36):1006-1010.

Davies

, Byington

; AAP Committee on Infectious Diseases. Parental presence during treatment of Ebola or other highly consequential infection. Pediatrics, 2016; 138(3):e20161891.

Mehrotra

, Shane

, Milstone

. Family-centered care and high-consequence pathogens: thinking outside the room. JAMA Pediatr, 2015; 169(11):985-986.

Hinton

, Davies

, Hocevar

, et al. Parental presence at the bedside of a child with suspected Ebola: an expert discussion. Clin Pediatr Emerg Med, 2016; 17:81-86.

10.

Dowell

. Ebola hemorrhagic fever: why were children spared?. Pediatr Infect Dis J, 1996; 15(3):189-191.

11.

Mupere

, Kaducu

, Yoti

. Ebola hemorrhagic fever among hospitalized children and adolescents in northern Uganda: epidemiologic and clinical observations. Afr Health Sci, 2001; 1(2):60-65.

12.

Olupot-Olupot

. Ebola in children: epidemiology, clinical features, diagnosis and outcomes. Pediatr Infect Dis J, 2015; 34(3):314-316.

13.

World Health Organization. Practical Guidelines for Infection Control in Health Care Facilities. Manila and New Delhi: World Health Organization; 2004. http://www.wpro.who.int/publications/docs/practical_guidelines_infection_control.pdf. Accessed December 12, 2018.

14.

Chughtai

, Barnes

, Macintyre

. Persistence of Ebola virus in various body fluids during convalescence: evidence and implications for disease transmission and control. Epidemiol Infect, 2016; 144:1652-1600.

15.

Centers for Disease Control and Prevention. Recommendations for breastfeeding/infant feeding in the context of Ebola virus disease. Updated June 10, 2016. https://www.cdc.gov/vhf/ebola/hcp/recommendations-breastfeeding-infant-feeding-ebola.html. Accessed December 14, 2018.

16.

Bower

, Johnson

, Bangura

, et al. Effects of mother's illness and breastfeeding on risk of Ebola virus disease in a cohort of very young children. PLoS Negl Trop Dis, 2016; 10(4):e0004622.

17.

Stockman

, Lowther

, Coy

, Saw

, Parashar

. SARS during pregnancy, United States. Emerg Infect Dis, 2004; 10(9):1689-1690.

18.

Brenner

. Child restraint in the acute setting of pediatric nursing: an extraordinarily stressful event. Issues Compr Pediatr Nurs, 2007; 30(1-2):29-37.

19.

Association of Child Life Professionals. The child life profession. https://www.childlife.org/the-child-life-profession. Accessed January 25, 2018.

20.

Haiat

, Bar-Mor

, Shochat

. The world of the child: a world of play even in the hospital. J Pediatr Nurs, 2003; 18(3):209-214.

21.

Anonymous. Advancing acute care. J Texas Children's Hosp, 2016; 3:12-14.

22.

Rabelo

, Lee

, Fallah

, et al. Psychological distress among Ebola survivors discharged from an Ebola treatment unit in Monrovia, Liberia—a qualitative study. Front Public Health, 2016; 4:142.