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?”
Parents and families are often unfamiliar with the delivery of care
Struggle grasping the sheer scope of it all: terminology, procedures, tests, equipment, diagnoses, surgeries, etc.
Do not understand hospital routines and practices including scheduling of rounds, staff rotations, hierarchy of providers, shift changes, care conferences.
Fearful of asking questions, of receiving “difficult parent” label.
Never heard common medical terms such as care plan, care conference, family-centered rounding, etc.
How providers may assist to improve a families’ understanding of the delivery of care
Explain in easy-to-understand language:
What to expect regarding whom will care for their child—whether nurses will change regularly, when staff physicians rotate, and how handoffs take place.
Medical terminology can be overwhelming at first, but not beyond understanding over time. Take time to explain, it goes a long way.
Families can request regularly scheduled debriefing of their child’s surroundings, so that, over time, lines, equipment, meds, etc, lose some ability to scare.
Families can request primary care nurses (if true), providing them with much needed consistency over time.
What time rounds take place and when families may speak with the team, ask questions, etc.
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.
The importance of the care plan—to discuss key milestones that mark progress.
Second opinions, questions, and conferences are a part of the regular delivery of medical care, and are welcomed by the team.
Parents and families often feel they have a lack of information
No primary point of contact; information received in “dribs and drabs” throughout the day.
Lab tests, consults, diagnostic tests, therapy sessions, etc are canceled or rescheduled without notification.
Unfamiliar, unaware of attendings’ rotation schedules, nursing shift changes, weekend coverage, etc.
Fear of being labeled a difficult parent if he/she speaks up.
PTSD, anxiety, sleep deprivation, all affect ability to register everything told.
How providers may improve communication
Foster a respectful working relationship by:
Give every family member a business card. (If you are a resident or fellow and don’t have cards, get some.)
Politely ask parents how they would like to be addressed. (Mom or Dad may be unsettling.)
Reintroduce yourself several times, especially at first.
If on the primary care team, inform the parents of your rotation or shift schedule.
Inform them if you are willing to answer written questions via e-mail or text.
Establish or work to establish primary point of contact.
Do not assume others on the care team have updated the family.
Help manage expectations.
Explain why the long wait: the myriad of logistics involved in coordinating complex care, and the inherent delays with multidiscipline approach.
Honor promises to return pages, calls, texts, or e-mails, even if answer is an ambiguous “don’t know.”
Restrict use of timelines (eg, eating in 3 months, off the ventilator in a week, etc); families cling to them.
Offer to accept questions later on in writing, especially if family is currently in distress or time is short.
A parent’s role is often confusing and unclear
Emotional, physical trauma of birth interferes with mother’s ability to advocate clearly and effectively.
Fear of being labeled difficult parent if he/she speaks up, or asks for conferences, second opinions, etc.
Feelings of guilt if the parent does not participate, or prefers only a short summary.
Overall feeling of helplessness, spilling into anger.
How providers may support the advocacy role
Provide assurances that:
Family involvement does not alter the medical team’s ultimate responsibility for overall care of the child.
The amount of participation varies for each family; it is up to the family to decide what is right for them.
The decision about whether or not to participate in rounding, care conferences, etc, is not set in stone, and can change over time.
Second opinions, questions, and conferences are a part of the regular delivery of medical care, and are welcomed by the team.
Their role in patient safety and quality control is critical.
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