Family-centered care is a synergistic relationship between the patient, family, and healthcare team that has long been associated with decreased hospital length of stay, more efficient utilization of resources, and reduced litigation risk. Family-centered care can play a unique role in neonatal and pediatric ICUs, where parents may feel helpless as they attempt to advocate and care for their critically ill children. When a child becomes a patient and parents may be perceived as visitors, family-centered care can advance the health and wellbeing of patients and their families.

The six core principals of family-centered care are

• listening and respecting
• flexibility
• sharing of information
• providing formal and informal support systems
• collaboration at all levels
• recognizing and building on strengths of individuals and their families.

Our neonatal ICU (NICU) integrated these core principles into practice with the help our hospital-wide Family Advisory Council (FAC), developed in 2006.

The goal of the FAC is to elicit feedback from families after their NICU experience. This is accomplished through the partnership of former NICU families, staff nurses, social workers, and nursing and medical directors. After discharge, families who meet selection criteria are invited to participate in quarterly FAC meetings for 1 year. Criterion for selection includes parents of infants who

• are from diverse backgrounds
• have infants whose hospital length of stay was at least 2 weeks
• received medical and/or surgical services
• received care from multiple consulting services within the hospital.

FAC meetings are semistructured and facilitated by the NICU senior leaders, including the nursing and medical directors. They guide conversations to maintain focus and achieve the goals of the meeting agenda. These open-forum style meetings take place in a private conference room within the NICU, and all participants are encouraged to provide feedback in a nonjudgmental and welcoming environment. Committee members ask for feedback on general issues and topics that affect a large population of our patients, rather than focusing on the specific needs of individuals. Through the sharing of significant experiences, FAC parent members discuss changes that may improve the next family’s NICU stay. Based on topics generated by FAC parents, guest speakers are sometimes invited to meetings to answer questions and provide insight related to their area of expertise. Guest speakers have included pediatric surgeons, financial counselors, and hospital administrators.

Feedback gathered through the FAC is then forwarded to the Families First Committee, which is composed of staff nurses and the social worker. This committee meets quarterly to review the feedback as the basis for possible changes.

Over several years, as a direct result of the outcomes from these two groups, this NICU has been able to incorporate the core principles of family-centered care via the FAC in the following ways.

Listening and respecting

Historically, family meetings with the NICU team, pediatric specialists and parents, were held at the request of a family or when vital information was communicated. Feedback from FAC resulted in the convening of a taskforce charged with development and implementation of a standard frequency for holding family meetings. Meetings typically occur biweekly, although the number is adjusted to meet what works for the family.

Flexibility

Flexibility of both parents and caregivers allows for fluidity in the plan of care and accommodates the ever-changing NICU environment, while promoting improved patient outcomes. Feedback from FAC identified the need for caregiver and parent flexibility around infant feedings, the timing of care, and parental involvement at the bedside. While involving parents in care when they are present was already a standard of practice in this NICU, bedside nurses were educated to go beyond their routine practice to allow as much participation from parents as possible. This included oral hygiene, diaper changes, feedings, assisting with physical and outpatient therapy, collaborating on developing daily schedules for their baby’s routine care, participating with child life activities, and less-restrictive infant holding practices.

Sharing of information

Family meetings and bedside updates consist of direct, honest, and complete information in an unbiased manner to allow families to establish a trusting relationship with caretakers. Upon admission, HIPAA standards are discussed with families, including what the standards mean to the family. For example, only parents may call for updates and receive medical information at the bedside. FAC feedback established novel communication tools in the NICU including a redesigned NICU welcome packet and “All About Me” worksheet (see below) that parents complete for transition to another floor or unit; the worksheet describes individualized preferences and routines for their baby.

All About Me worksheet

Formal and informal support systems

Several modalities are used to support patients and their families in the NICU. Frontline nurses play a crucial role in supporting families at the bedside. This support is multifaceted and complementary to that of other team members. For example, the NICU social worker provides emotional support and identifies concrete resources for families while their child is hospitalized. She also serves as the gatekeeper through which additional support services are established. Child life specialists work with patients on developmental care needs, establishing routines and structured playtime. In conjunction with the social worker, the child life specialist provides sibling support and organizes playtime activities.

In response to FAC feedback, several changes were made to our NICU’s established support systems. These changes included a parent coffee hour, a parent-to-parent support program, parent relaxation opportunities such as Reiki and chair massage, and scrapbooking opportunities for family members.

Families may also designate support visitors who are given permission to visit without the parents being present. The council has also initiated early involvement of our Pediatric Advanced Care Team to meet the needs of families struggling with children with advancing illness, such as those who are not responding to treatment.

Collaboration

Our multidisciplinary NICU team of physicians, nurse practitioners, nurses, respiratory therapists, and other support staff work hard to achieve a collaborative approach to caring for critically ill infants. Parents are considered valued members of the team in our NICU, and their input is treated as such. FAC feedback prompted an innovative nurse-driven research study that examined the inclusion of parents on rounds, which received favorable reviews by parents. The routine integration of this practice into the NICU is planned for the future.

Recognizing strengths

One of the key factors to successful family-centered care is determining a family’s strengths. These strengths can then be channeled to improve patient care and the hospital experience. The FAC provides an unparalleled opportunity for NICU leaders to collect family satisfaction data, assess parental understanding, and to determine parental readiness to care for medically complex infants who are to be discharged to home. Several tools, such as videos and written care plans, have been developed and implemented in the NICU to streamline and enhance parent education plans.

Recognizing family values

This NICU values family-centered care and considers it the corner stone of collaborative practice. Asking families to actively participate in a forum that allows for open and honest feedback has become a highly effective tool in operationalizing family-centered care.

Jody Heffernan is a Staff Nurse II at Boston Children’s Hospital in the NICU and serves on both the Families First Committee and the Family Advisory Council. Kathryn Gustafson is a Staff Nurse III at Boston Children’s Hospital in the NICU and is the co-chair of the Family Advisory Council. Stephanie Packard is a Staff Nurse III in the NICU at Boston Children’s Hospital and a project manager for Safety and Quality in the Cardiovascular and Critical Care Programs. Cheryl Toole is the Director of Nursing Patient Services in the NICU and has led the Family Advisory Council from development through present day. The authors would like to thank Michele Degrazia, PhD, RN, NNP-BC, Director of Nursing Research in the NICU for her assistance in the development of this manuscript.

Selected references

American Academy of Pediatrics. Patient and family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394-404.

Busse M, Stromgren K, Thorngate L, et al. Parents’ responses to stress in the neonatal intensive care unit. Crit Care Nurse. 2013;33(4):52-60.

Davidson J. Family-centered care: meeting the needs of patients’ families and helping families adapt to critical illness. Crit Care Nurse. 2009;29(3):28-34.

Meert K, Clarck J, Eggly S. Family-centered care in the pediatric intensive care unit. Pediatr Clin North Am. 2013;60:761-72.

Warren N. Involving patient and family advisors in the patient and family-centered care model. Medsurg Nursing. 2012;21(4):233-39.