Authors

  1. Brandon, Debra H. PhD, RN, CNS, FAAN
  2. Co-Editor in Chief
  3. McGrath, Jacqueline M. PhD, RN, FNAP, FAAN
  4. Co-Editor in Chief

Article Content

Neonatal intensive care unit (NICU) nurses and other care providers were early adopters of family-centered care in the hospital setting, well ahead of other pediatric and adult units. Over the past 30 years, NICU parents became essential members of the healthcare team, not "visitors" in the NICU. The COVID-19 pandemic challenged this philosophy and almost overnight parents of critically ill infants were no longer essential care providers and were once again relegated to "visitor" status.1 While there are various models of family-centered care, family-integrated care focuses on engagement of parents in the care of their infant during hospitalization as partners in care through their physical presence.2,3 Family-integrated care provides emotional support for parents as they navigate the unfamiliar environment. Units that use family-integrated care had improved infant weight gain, decreased parent stress and anxiety, and increased exclusive breastfeeding at discharge.4

 

During the pandemic, many units shifted from a focus on family-centered care to safety of infants, parents, and providers. For many families, the pandemic exacerbated the challenges they already faced to be physically present and participate in the care of their infant. Restrictive policies put in place for safety limited the number of parents who could visit and the time of day they could be physically present with their infant. Parents had to balance work and caring for other children while navigating the experience of caring for a hospitalized infant in the middle of a pandemic. For example, parents may have had limited resources for transportation to the hospital, especially with significant distances or the lack of public transportation. In addition, parents were often homeschooling older siblings that limited their available time to be present with their hospitalized infant. Families with greater financial stress and with mental health problems were often most impacted by the restrictions placed on families.5

 

NICU providers were also challenged on multiple fronts during the pandemic, including implementation of new and evolving restrictions on parental presence. Unit policies changed rapidly and frequently as the science evolved. Despite leadership teams' best efforts, these changes often led to unclear communication with families and subsequent frustrations for both families and providers.1

 

Parents' ability to be physically present with their child as much as they would desire has always had challenges in the NICU, which were exacerbated by COVID-19. In this issue, we have 3 articles that present parents' perspectives on what it was like to have an infant in the NICU during the pandemic. These articles highlight important lessons learned to best support parents today and beyond.

 

Ms. Biskop and colleagues shared the experience of parents in Sweden who were separated from their infants because of testing positive for COVID-19.6 It is important to note that prepandemic, 62% of Sweden NICUs had facilities that supported a mother's physical presence 24/7 from birth until discharge home, which included a place for the mother to sleep either in a room with her infant or nearby.7 Please examine the important findings from this study. They underscore the importance of clear communication and ongoing support for parents when they must be separated from their infant. However, separation may occur in many contexts that need consideration by the healthcare team such as military deployment and parents impacted by the justice system.

 

Ms. Yance and colleagues further describe the experiences of mothers in Ontario, Canada.8 Parental presence early in the pandemic was limited to one parent for a scheduled 3-hour period of time. Mothers reported that building trust with the healthcare team during those uncertain times was essential. Key elements to building trust included empathy and support from the team, consistency in the nurses caring for their infant, and clear and transparent communication. The findings of this study emphasize the important role of consistency in the delivery of care that is exemplified in primary nursing.

 

The last article in this series by Dr Ritcher and colleagues describes the experiences of mothers from Vancouver, Canada.9 As with the other 2 articles, the consequences of separation from their infant due to COVID-19 polices were featured. Unlike the other 2 articles, mothers described some "positive" aspects of the restrictive policies around visitation. For example, it was easy to keep unwanted visitors at bay. Finally, like others,3,10the introduction of virtual platforms for telehealth, educational programing, and group support allowed for greater access and flexibility.

 

Many of the recommendations from the 3 articles in this issue as well as other recent pandemic studies focused on the importance of interventions that facilitate the integration of families into the care of their infant and that support parental well-being. Institutional policies during the pandemic greatly impacted family-centered care. However, factors that impede parents' ability to be physically present and participate in their infant's care to the degree they desire existed prior to the pandemic and continue today such as the financial costs of taking work leave to be with and care for their infant. In addition, while most NICUs have policies that stated parents can be present 24/7, in actuality, parents are often asked to leave during rounds, procedures, or during a crisis in the unit. The pandemic brought much more scrutiny to the issue of supporting family presence and how that presence could be perceived by nurses at the bedside.

 

There was much uncertainty around the COVID-19 virus, especially in neonates; however, uncertainty of outcomes is not new for neonatal healthcare providers. In contrast, the NICU is a place of uncertainty for all parents that necessitates parental support to minimize parental stress and maximize parental well-being. Parents are the lifelong caregivers of their child; we have them in the NICU for a short time, a formative time in their growing relationship. Care providers in the NICU need to consider how best to support the developing relationship between parents and their infant. Some general recommendations to support infants and the presence of their families include the following:

  

1. Supportive hospital policies to facilitate parental presence and participation in infant care to the degree parents desire.

 

2. Physical NICU environments that supports parental presence.

 

3. Transparent communication and education that encourage parents as decision-makers for their infant.

 

4. Parental support that supports their well-being through ongoing screening and access to emotional support (eg, peer support groups) or counseling (eg, psychological) as needed.

 

5. Virtual or telehealth modalities to allow for greater flexibility and access.

 

-Debra H. Brandon, PhD, RN, CNS, FAAN

 

Co-Editor in Chief; Advances in Neonatal Care,

 

[email protected]

 

-Jacqueline M. McGrath, PhD, RN, FNAP, FAAN

 

Co-Editor in Chief; Advances in Neonatal Care,

 

[email protected]

 

References

 

1. Carter BS, Willis T, Knackstedt A. Neonatal family-centered care in a pandemic. J Perinatol. 2021;41(5):1177-1179. doi:10.1038/s41372-021-00976-0. [Context Link]

 

2. Franck LS, Waddington C, O'Brien K. Family integrated care for preterm infants. Crit Care Nurs Clinics North Am. 2020;32(2):149-165. doi:10.1016/j.cnc.2020.01.001. [Context Link]

 

3. O'Brien K, Robson K, Bracht M, et al; FICare Study Group and FICare Parent Advisory Board. Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. Lancet Child Adolesc Health. 2018;2(4):245-254. doi:10.1016/S2352-4642(18)30039-7. [Context Link]

 

4. Waddington C, van Veenendaal NR, O'Brien K, Patel N; International Steering Committee for Family Integrated Care. Family integrated care: supporting parents as primary caregivers in the neonatal intensive care unit. Pediatric Investig. 2021;5(2):148-154. doi:10.1002/ped4.12277. [Context Link]

 

5. Vance AJ, Malin KJ, Chen B, Shuman CJ, Moore TA. Impacts of neonatal hospitalization on families during the 2019 coronavirus pandemic. Am J Perinatol. 2021;38(11):1201-1208. doi:10.1055/s-0041-1731649. [Context Link]

 

6. Biskop E, Blomqvist YT, Diderholm B, Grandahl M. To feel abandoned in an insecure situation: parents' experiences of separation from their newborn due to their mother being COVID-19 positive. Adv Neonatal Care. 2023;23(4):304-310. [Context Link]

 

7. Flacking R, Breili C, Eriksson M. Facilities for presence and provision of support to parents and significant others in neonatal care. Acta Paediatr. 2019;108(12):2186-2191. doi:10.1111/apa.14948. [Context Link]

 

8. Yance B, Do K, Heath J, Fucile S. Parental perceptions of the impact of NICU visitation policies and restrictions due to the COVID-19 pandemic: a qualitative study. Adv Neonatal Care. 2023;23(4):311-319. doi:10.1097/ANC.0000000000001077. [Context Link]

 

9. Richter LL, Ku C, Mak MYY, et al Experiences of mothers of preterm infants in the neonatal intensive care unit during the COVID-19 pandemic. Adv Neonatal Care. 2023;23(4):295-303. [Context Link]

 

10. Duff J, Curnen K, Reed A, Kranz C. Engaging parents of hospitalized neonates during a pandemic. J Neonatal Nurs. 2021;27(3):185-187. doi:10.1016/j.jnn.2020.11.013. [Context Link]