Family Presence in the NICU

Constraints and Opportunities in the COVID-19 Era

Janelle Bainter; Marybeth Fry; Brenda Miller; Teesha Miller; Amy Nyberg; Alexa O'Dell; Ginny Shaffer; Lelis Vernon

Disclosures

Pediatr Nurs. 2020;46(5):256-259. 

In This Article

Moving Forward With Family-centered Care

It is our view that the principles of patient- and family-centered care should never be set aside during a pandemic or under any circumstances. We believe we need to strive for active partnerships to ensure that families are fully integrated into the health care teams of their babies. This commitment needs to be supported through actions, mission and vision statements, and unit policies and guidelines, all adapted to and by the conditions of the pandemic.

Moving forward with this new COVID-related (ab)normal, the core concepts of patient- and family-centered care (see Figure 2) must not only be observed, but undergo specific adaptations to best cultivate partnerships with families as policies and practices are modified for the future of health care delivery in the NICU. Below we suggest some starting points for dialogue based on the core concepts.

Figure 2.

Core Concepts of Patient- and Family-Centered Care
Source: Adapted from Johnson & Abraham, 2012.

Dignity and Respect

Covid-19 has had a disproportionate impact on vulnerable populations. Racial and ethnic disparities in the NICU setting need to be addressed to enable all families an equal level of collaboration, decision-making, planning, information-sharing, and participation in the care of their babies.

Ensuring that families' values, beliefs, perspectives, and choices are incorporated into the planning and delivery of care for diverse populations is a prerequisite for culturally sensitive collaborative interactions between clinicians and families – whether they occur in-person or remotely.

Information Sharing

As we move forward, a commitment needs to be made to effectively communicate with families, whether in person, by telephone, or with Internet-based connections. When planning care conferences, technological platforms can be used when necessary but should never supersede in-person participation at the bedside, which is always the most beneficial interaction for the family and the baby.

In addition to sharing information about the health status of individual babies, it is equally important to standardize the communication of policy changes to families in the COVID-19 environment. Informing families of controversial hospital policy changes should be the responsibility of unit and hospital leadership, rather than the burden of bedside staff. Family Partners can provide an important role in helping to craft messages about those policy changes.

Participation

Families are essential caregivers for their babies and should always be encouraged and supported in participating as team partners in the NICU, even during a public health crisis like COVID-19. To participate in decision-making related to care for their babies, families need to have continuous, unrestricted access to the NICU. To ensure full family participation while also assuring the safety of hospital staff, clinicians, patients, and families, hospitals may need to provide PPE to families and instructions about its proper use.

Increased anxiety and stress, decreased care and learning opportunities for families, and interrupted bonding may all have a lasting impact on long-term outcomes for babies, as well as on the mental health of family members. Benefits of skin-to-skin holding are well known, and these benefits can be interrupted if family access is restricted. These and all other risks associated with interruption of family presence at the bedside should be evaluated and addressed in the decision-making process, ideally in partnership with Family Partners.

Collaboration

Some hospitals and NICUs have worked over a long period of time to include the family voice in policy decisions and program development. Family Partners often serve as employees or trained volunteers who provide essential support to families during the NICU stay. In a time of fast-paced change, collaboration with Family Partners should be considered even more important. Through them, NICU administrators and staff can gain insight into how new decisions may impact families receiving care in the unit.

Family Partners are always 'essential,' even during a pandemic, and therefore, should be provided with the necessary PPE to perform their roles. Additionally, as Family Partners may be limited in their ability to engage in face-to-face participation due to changing obligations at home, technology should be used to include the vital family voice in any decision-making and policy considerations.

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