Chapter 4: Parents and Families in the NICU and Beyond

Parents and Families in the NICU and Beyond

All content in this section was prepared by families whose children spent time in the NICU and is grounded in the principles of family-centered care. Family-centered care is an inclusive approach to caring for each patient: a genuine partnership among the health care team, the patient, their family, and the family's support system, based on mutual respect and effective communication.

We asked parent and family representatives from some of the top NICUs in the United States to give us feedback on their experiences as parents in the NICU, preparing for discharge, and postdischarge. We asked their perspective on how we, as medical providers, can improve on the care that we provide for their loved ones. Specifically, we asked them to comment on the following:

• Parent roles/wishes/expectations/stressors during NICU hospitalization

• Parent/family involvement in NICU discharge planning

• Parent/family roles as advocates post-NICU discharge

• As a parent/family member of an NICU graduate, “what do you wish you had known then” and “what do you wish your baby's doctors/nurses had done differently?”

I. Navigating the health care system

1. Parents and families are often unfamiliar with the delivery of care

   1. Struggle grasping the sheer scope of it all: terminology, procedures, tests, equipment, diagnoses, surgeries, etc.

   2. Do not understand hospital routines and practices including scheduling of rounds, staff rotations, hierarchy of providers, shift changes, care conferences.

   3. Fearful of asking questions, of receiving “difficult parent” label.

   4. Never heard common medical terms such as care plan, care conference, family-centered rounding, etc.

2. How providers may assist to improve a families' understanding of the delivery of care

   Explain in easy-to-understand language:

   1. What to expect regarding whom will care for their child—whether nurses will change regularly, when staff physicians rotate, and how handoffs take place.

   2. Medical terminology can be overwhelming at first, but not beyond understanding over time. Take time to explain, it goes a long way.

   3. Families can request regularly scheduled debriefing of their child's surroundings, so that, over time, lines, equipment, meds, etc, lose some ability to scare.

   4. Families can request primary care nurses (if true), providing them with much needed consistency over time.

   5. What time rounds take place and when families may speak with the team, ask questions, etc.

   6. That the decision about whether to participate in rounding can be made day-to-day, and there is no requirement for parents to speak during rounding.

   7. The importance of the care plan—to discuss key milestones that mark progress.

   8. Second opinions, questions, and conferences are a part of the regular delivery of medical care, and are welcomed by the team.

II. Communication

1. Parents and families often feel they have a lack of information

   1. No primary point of contact; information received in “dribs and drabs” throughout the day.

   2. Lab tests, consults, diagnostic tests, therapy sessions, etc are canceled or rescheduled without notification.

   3. Unfamiliar, unaware of ...