key: cord-0766848-dohy9i21
authors: van Veenendaal, Nicole R.; Deierl, Aniko; Bacchini, Fabiana; O’Brien, Karel; Franck, Linda S.
title: Supporting parents as essential care partners in neonatal units during the SARS‐CoV‐2 pandemic
date: 2021-05-27
journal: Acta Paediatr
DOI: 10.1111/apa.15857
sha: 3358a3078cf3baf27195063ba3f783fb053c5265
doc_id: 766848
cord_uid: dohy9i21

AIM: To review the evidence on safety of maintaining family integrated care practices and the effects of restricting parental participation in neonatal care during the SARS‐CoV‐2 pandemic. METHODS: MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched from inception to the 14th of October 2020. Records were included if they reported scientific, empirical research (qualitative, quantitative or mixed methods) on the effects of restricting or promoting family integrated care practices for parents of hospitalised neonates during the SARS‐CoV‐2 pandemic. Two authors independently screened abstracts, appraised study quality and extracted study and outcome data. RESULTS: We retrieved 803 publications and assessed 75 full‐text articles. Seven studies were included, reporting data on 854 healthcare professionals, 442 parents, 364 neonates and 26 other family members, within 286 neonatal units globally. The pandemic response resulted in significant changes in neonatal unit policies and restricting parents' access and participation in neonatal care. Breastfeeding, parental bonding, participation in caregiving, parental mental health and staff stress were negatively impacted. CONCLUSION: This review highlights that SARS‐CoV‐2 pandemic‐related hospital restrictions had adverse effects on care delivery and outcomes for neonates, families and staff. Recommendations for restoring essential family integrated care practices are discussed.

At the beginning of 2020, as a consequence of the pandemic and paucity of knowledge around SARS-CoV-2, hospitals and healthcare systems acted swiftly to put in place measures intended to reduce viral spread. 1, 2 Many decisions were made emergently with little evidence to support them. Hospitals often applied a 'one-size-fitsall' approach without regard to the particular contexts of different patient care areas. Much of the focus was on adult care. The essential and irreplaceable benefits of parental caregiving in neonatal and paediatric services were often not considered.

Despite longstanding public pledges by healthcare organisations to deliver family-centred care, families were often not involved in the development of COVID-19 pandemic response plans. 3 Families had restricted access to their loved ones; digital platforms were installed to replace personal contact between patients and their families; patients died without their family at the bedside, and person-and family-centred care practices worldwide were constrained. 4 Some hospitals made exceptions for neonatal and paediatric units. 3 However, many neonatal intensive care units (NICUs) restricted parental access to one parent (usually the mother) and, depending on the region or clinical circumstances, significantly restricted the amount of time parents could spend with their infant (sometimes as low as 5-15 min per day). 3, 5 The one-parent policy left fathers/partners unable to see their infant, often for many weeks.

Restricting parents' access to their infant can have detrimental effects on parent-infant bonding, parental mental health and breastfeeding and this collateral damage is known to have long-term adverse effects. 6 The pandemic-related restrictions on family participation in caregiving for small and sick newborns abandon progress made over decades to achieve zero-separation between parents and their infants, even (or especially) for the most critically ill newborns.

Pandemic-related practices restricting parental presence and participation in neonatal care all contravene evidence and best practice guidance and standards, for example, in the European Standards of Care for Newborn Health and the World Health Organisation Survive and Thrive report. 7, 8 To achieve the standards, NICUs are expected to actively welcome and engage parents in the care of their newborn, facilitate 24/7 parental presence, encourage early skin-toskin contact and provide breastfeeding support, along with other family centred care/family integrated care practices. These best practices and standards apply across levels of care and high-or lowincome country status.

Since the start of the pandemic, evidence has emerged that SARS-CoV-2 affects the neonatal/ paediatric population differently than adults and that there is a low risk of vertical and horizontal transmission in the neonatal period. [9] [10] [11] Systematic reviews and guidelines have already provided guidance on the treatment and management of COVID-19 positive mothers and their infants. 5 However, we found no review of the evidence regarding the restrictions placed on parental presence and participation in neonatal care.

Therefore, we conducted a systematic review of the evidence on the safety of maintaining family integrated care practices during the SARS-CoV-2 pandemic and the effects of restricting parental access to neonatal care. Our primary aim was to review published studies reporting on family integrated care/family centred care practices implemented or restricted due to hospital policies affecting families during the SARS-CoV-2 pandemic and the effect those policies have had on families and healthcare professionals. Following our critique of the evidence, we propose evidence-based recommendations to support parental presence and family integrated care during the COVID-19 or any future public health emergencies.

For this systematic review, we used the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines 12 and the Guidance for Reporting Involvement of Patients and the Public (GRIPP-2) short form. 13 

A medical information specialist, experienced in systematic reviews, searched the following databases from inception to the 14th of October 2020: MEDLINE, EMBASE, CINAHL, PsycINFO (through the OVID interface). We used both controlled terms (ie MeSH-terms in MEDLINE) and free text terms related to infants, families and SARS-CoV-2/COVID-19. See Appendix S1, for full search strategies.

There were no restrictions on language, date, study type or publication status. We cross-checked reference lists and cited articles of identified relevant papers. Records were considered eligible for inclusion if they reported on scientific, empirical research (qualitative, quantitative or mixed methods) reporting the effects of restricting or promoting family integrated care practices for parents, or the needs of parents of hospitalised infants during the SARS-CoV-2 pandemic. Two researchers (NvV and AD) screened abstracts and assessed full-text articles for inclusion. Discrepancies were resolved

• During the pandemic, hospitals attempted to limit viral spread by restricting access to all but essential staff of inpatient areas. The benefits of parental caregiving in neonatal intensive care were not considered separately.

• This systematic review of the published evidence found that the policy changes adversely impacted parents, infants and healthcare staff.

• We provide guidelines to safely re-establish parents as essential care providers during a pandemic. via discussion within the research team. We used the most complete and recent paper if multiple papers assessed the same (sub) population.

Data extraction included meta-data (eg authorship, publication year); methodological aspects (eg study design, setting, sample size, family integrated care practices, measurement instruments, analytic approach); and outcomes (e.g. qualitative quotes and interpretations, statistical evidence). The prespecified outcomes on the hospital level included: parental presence on units, skin-to-skin care, degree of family centred care (FCC), degree of family integrated care (FICare), breastfeeding rates and rooming-in rates. On the family level, outcomes included parent infection with SARS-CoV-2, stress, satisfaction, participation, self-efficacy, depression, anxiety, post-traumatic stress, empowerment and parent-infant bonding during the infant's hospital stay.

As we anticipated diverse study designs, we used the 16-item Quality Assessment Tool for Studies with Diverse Designs (QATSDD) to assess study quality. 14 This tool has good reliability and validity across study domains and is suited for the assessment of qualitative, quantitative and mixed-methods studies. 15 Quality of each record was independently and blind from each other assessed by two researchers (NvV and LF).

We identified a total of 803 articles with our search strategy. After screening titles and abstracts, 75 full-text articles were assessed (see Studies were conducted globally (n = 2 studies 16, 17 ) , in the USA (n = 3 studies [17] [18] [19] in the UK (n = 2 studies 19, 20 ) , one in China 21 and one in Italy. 22 Two studies used mixed-methods, 16, 19 4 were quantitative studies, 17, 18, 20, 22 and 1 was a qualitative study. 21 The most common study design was a cross-sectional survey. See Table 1 for details of the studies included.

Quality of the studies was moderate. Most studies lacked an explicit theoretical framework, power calculations to assess outcomes, assessment of reliability and validity of surveys, and involvement of stakeholders in research and design ( Table 2 ).

The limited research on the pandemic responses of hospitals and NICUs revealed significant changes in the dimensions that were investigated: NICU operations, SARS-CoV-2 transmission, impact on breastfeeding, parental bonding, parental participation in caregiving, parental mental health and staff stress. The findings are described in detail below and in Table 1. 3.1.1 | Changes in NICU policies affecting parent and family access and patient care Changes in overall hospital entry screening policies became widespread during the SARS-CoV-2 pandemic and included significant increases in physical temperature checks, and triage/screening questions regarding travel history, cough, fever or loss of smell for hospital entry. 17 NICUs revoked parental 24-h access and as a result, parents were unable to attend daily rounds and be involved in usual care tasks. 17 Some hospitals completely refused entry to parents during the pandemic, even if their infant was in extremis. 17, 19, 21 Most often the hospital policies evolved to permit one parent at a time to be present with the infant. However, the support for prolonged parental presence (rest space and food) was significantly reduced 17,20 and there was a significant reduction in therapy services and lactation support. 17 In addition to the loss of parent and family participation in care, the pandemic-related restrictions significantly affected staffing and further impacted patient care. Forty-three per cent of units sur- 

The research to date on the impact of the pandemic on breastfeeding outcomes for NICU infants and mothers' breastfeeding experiences describes a possible negative affect for both term mother and infant dyads as for preterm infants in a NICU environment. Mothers frequently reported not being supported to provide skin-to-skin care to their infant or encouraged to breastfeed as soon as possible after birth. 19 They reported not receiving enough information on expressing breastmilk or breastfeeding support. 19, 20 In term infants, a report from the UK based on a parent survey of 1219 mothers, indicated that many who stopped breastfeeding felt that the lack of face-to face support and concerns about safety of breastfeeding during the pandemic contributed to the cessation of breastfeeding earlier than planned. As part of this larger study of breastfeeding, survey participants whose infants were admitted to the NICU (n = 103/1219) were asked about parental access and support. 20 Of this subsample, 19.4% (20/103) reported they were not permitted to see their infant in the NICU. This separation was detrimental for breastfeeding and associated with 80% of the mothers (16/20) no longer breastfeeding at the time of the survey. Other reports in the NICU population also indicate that breastfeeding was negatively impacted by the parent-infant separation and the lack of lactation support both in hospital and on discharge home. 17, 19 3.1.4 | Impact on parent-infant bonding and parent participation in care Parents reported that the restrictive policies on their NICU access limited their ability to bond with their infant or to participate in their infant's care or NICU daily rounds. 17, 19, 20 Parents also expressed concerns that they received insufficient information and updates about their infants due to the restrictions. NICUs that had singlefamily room designs were better prepared to support parents to be with their infant during the pandemic and to enable them to participate in daily rounds. 17 In addition, due to lack of staff support coupled with imposed restrictions on time with their infant, parents reported that they sometimes had to choose between learning technical skills from nurses (eg tube feeding) versus holding and bonding with their infant. Parents also reported that wearing a face mask affected bonding with their infant and depersonalised interactions with staff. 19 

In the early phase of the pandemic, 14 parents of infants in a NICU in China, described difficulties in obtaining up-to-date information on their children's condition, and unmet needs for psychological and emotional support. They also described challenges with transportation or work commitments, and concerns about how to protect their infants or deal with medical expenses after discharge. 21 Other survey studies documented reduced psychosocial support for parents related to hospital pandemic restrictions. 17, 18 Parents reported concerns about not being able to bring siblings and grandparents to the NICU to provide them support and expressed concerns surrounding not being able to spend time together as a family. 19 Psychological outcomes in parents were often not assessed after restrictions were put in place. 22 Parents reported impact on their mental health if they were not able to be with their infant. 19 3.1.6 | Impact on healthcare professionals HCPs during the pandemic reported high level of stress and anxiety. 16, 17 HCPs expressed a fear of nosocomial acquisition either due to lack of personal protective equipment (PPE) and/or COVIDsymptom screening. In some instances, PPE supplies were prioritised to adult wards caring for COVID-19 positive patients in contrast to maternity wards and NICUs. 16 Shortages of qualified HCPs, increased workload and frequent schedule changes due to redeployment or COVID-19 quarantine/illness have also been reported as sources of HCP stress. 16, 17 NICU staff also expressed concerns regarding the impact of the policy restrictions on family presence and participation on the quality of infant care.

In this systematic review, we summarise the emerging research and importance of family integrated care practices during the SARS-CoV-2 pandemic. The findings indicate that parent and family access and participation in infant caregiving has been severely restricted and has led to adverse effects for infants, families and HCPs. Patients and their families must be supported to maintain physical and emotional contact under all circumstances. While infection control measures need to be taken, parents must be included as partners in their infant's care and establish safe family presence and shared care delivery. 23 The severe restrictions imposed in hospital perinatal settings, including the NICU, have increased parent-infant and parent-parent separation, and this together with the anxiety concerning the SARS-CoV-2 pandemic was found to be associated with acute distress and may worsen long-term mental health, for this already high-risk population. While telemedicine/video systems were implemented and used in many places 17 and online parent support groups were created, 24 they are not able to replace the benefit of parents' physical contact, and efficacy remains to be elucidated. One study reported on the use of a video-messaging service for parents to improve engagement but did not include the evaluation during the COVID-19

pandemic. 25 Our systematic review indicated that most often, infections came from HCPs and not from the parents. 22 Rather than banning parents from the NICU, alternative strategies to preventing infection may be more effective, such as universal screening to identify Most were obstetricians/ gynaecologists or midwives (38% and 35%, respectively) Facility-level responses to COVID-19 were more common in high-income countries compared to low-/middle-income countries.

--Y 90% of respondents reported higher levels of stress Stress levels somewhat higher in 52% and substantially higher in

Most were knowledgeable about hospital COVIDguidelines but up to 80% had some areas of concern or lack of clarity.

Respondents perceived the lack of COVID-19 symptom screening and testing as threats to staff and patient safety. 

We found only a limited number of studies of the impact of the SARS-CoV-2 pandemic on families with infants in NICUs and no data on longer term consequences related to increased separation.

Therefore, we regard this evidence as preliminary. There is an urgent need to continue to follow infants and families exposed to these severe restrictions during the pandemic to assess long-term impact on physical and mental health and development. A strength of this study is that we have included parents of NICU infants as part of our study team and have reviewed the findings within our multidisciplinary team of HCPs adding to the validity and importance of this review for all stakeholders. We did not assess the "grey" literature for this review. Newspapers, social media, blogs (etc) also discussed the impact of restrictions of hospital policy entrance for family in the (early phases of the) epidemic. 30 

Hospitals responded quickly to install restrictive measures within neonatal care during the COVID-19 pandemic, often without consulting parents and assessing the long-term impact on parents and their babies. Our review highlights that the described restrictions have increased parent-infant separation, reduced the chance of successful breastfeeding, and together with anxiety concerning the SARS-CoV-2 pandemic may worsen the long-term mental health damage additionally to the high risk associated with the perinatal period and NICU journey.

It is time to (re)instate families as full partners in neonatal care delivery and to safely practice evidence-based family centred and family integrated care in all (neonatal) care settings despite the current pandemic and beyond.

We would like to thank B. Berenschot and C. den Haan from the Library of OLVG, Amsterdam, The Netherlands for setting up the search strategy and acquiring full texts.

None. 

We as the International Steering Committee for Family Integrated Care make the following recommendations. These should be supported to enable both parents unlimited access and participation in care of their infant(s) for the duration of their infant's stay in hospital, ensuring that parents are supported to meet the same screening criteria as used for staff.

• A birth partner/parent should be supported to attend the delivery of their infant in the labour ward, unless they are symptomatic, or have been advised to self-isolate or quarantine.

• Mothers and infants should remain together, even if mother is COVID-19 positive; they should still be able to practice skin-to-skin care and rooming-in day and night especially during establishment of breastfeeding.

• Both parents should be with their infant on the neonatal unit and postnatal ward, unless they are symptomatic or have been advised or required to self-isolate or quarantine. Use of verbal/written symptom checklist at the entrance to the unit/hospital as is required by staff is suggested.

• Parents should be provided with the same protection as staff, for example, surgical face masks, or be able to bring their own face masks.

Parents need information and education about when masks are required, how to wear them, how to wash if cloth masks are used, and where they would be able to purchase surgical masks if they are not supplied by the hospital.

• All parents and staff should be educated and apply appropriate hand-and respiratory hygiene measures within the hospital and the home environment.

• Physical distancing advice should be supported, and if not possible, parents should be provided with the same infection control precautions, education and advice as staff. If available, parents should have access to regular testing (PCR or antigen testing) in the same way as staff.

• Parents should be included in ward rounds and be part of holistic family care, including education and psychosocial support.

• If physical distancing within the unit is not possible, one parent at a time should be involved in their infant's care without time restrictions;

this enables parents to take turns. There is no rationale for the restriction of time or the restriction to one person alone from the same household.

• Parents and staff should adhere to physical distancing policies in the neonatal unit or postnatal ward, including in communal areas, such as parents' waiting rooms and reception areas of the neonatal units.

• Continual wearing of face masks by parents could potentially impact negatively upon infant development and parent-infant bonding and may hinder hearing-impaired staff and parents. NICU's should consider the use of approved clear masks for this population. Where a safe physical distance can be maintained between staff and families, parents should be supported to care for their infant at the cot-side without wearing a face covering.

• Where possible, dedicated space should be available for parents to safely eat and rest, on the neonatal unit or nearby so to be close to their infant.

• Neonatal teams should make every effort to provide additional measures to support parental presence during COVID-19, including the provision of face masks, accommodation, meals, parking and transport.

• Appropriate technological support using video calling and Apps should not be used to replace parental presence in the neonatal unit but can be used to support parental involvement and communication with staff at those times when parents cannot be with their infant.

• For babies critically ill or receiving palliative or end-of-life care, everything possible should be done to achieve parental presence and participation in care, even for SARS-CoV-2 positive parents.

• As vaccines become more available, parents as primary caregivers, members of the neonatal team should be given early access to vaccination along with healthcare professionals in the neonatal intensive care units to reduce risk of cross transmission.

Do established infection prevention and control measures prevent spread of SARS-CoV-2 to the hospital environment beyond the patient room?

Physical distancing, face masks, and eye protection to prevent person-to-person transmission of SARS-CoV-2 and COVID-19: a systematic review and meta-analysis

COVID-19 Hospital Restrictions -Surveying Impact on Patient-and Family-Centered Care

Not dying alone -modern compassionate care in the Covid-19 pandemic

International comparison of guidelines for managing neonates at the early phase of the SARS-CoV-2 pandemic

Birth practices: maternal-neonate separation as a source of toxic stress

Standards of Care for Newborn Health

Survive and thrive: Transforming care for every small and sick newborn

Frequency of children vs adults carrying severe acute respiratory syndrome coronavirus 2 asymptomatically

Analysis of SARS-CoV-2 vertical transmission during pregnancy

Infants born to mothers with COVID-19-making room for rooming-in

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Reviewing studies with diverse designs: the development and evaluation of a new tool

The QATSDD critical appraisal tool: comments and critiques

Voices from the frontline: findings from a thematic analysis of a rapid online global survey of maternal and newborn health professionals facing the COVID-19 pandemic

Impact of restrictions on parental presence in neonatal intensive care units related to coronavirus disease 2019

Family presence in the NICU: constraints and opportunities in the COVID-19 Era

Parental perceptions of the impact of neonatal unit visitation policies during COVID-19 pandemic

Experiences of breastfeeding during COVID-19: lessons for future practical and emotional support

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Asynchronous video messaging promotes family involvement and mitigates separation in neonatal care

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Inside the pandemic-era NICU, where one-parent rules and strict visitation hours are upending the lives of critically ill babies

the International Steering Committee for Family Integrated Care. Supporting parents as essential care partners in neonatal units during the SARS-CoV-2 pandemic