Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit

A Pilot Study

Kelly N. Michelson, MD, MPH; Elizabeth Charleston, BS; Danica Y. Aniciete, MS; Lauren R. Sorce, PhD, RN, CPNP-AC/PC; Patricia Fragen, BA; Stephen D. Persell, MD, MPH; Jody D. Ciolino, PhD; Marla L. Clayman, PhD, MPH; Karen Rychlik, MS; Virginia A. Jones, MS; Pamela Spadino, BA; Marcelo Malakooti, MD; Melanie Brown, MD; Douglas White, MD, MAS


Am J Crit Care. 2020;29(4):271-282. 

In This Article


From November 2014 to July 2015, we identified 95 eligible patients from 621 screened patients (Figure 2). We invited the parents of 53 patients to enroll. Forty-four parents of 35 patients participated (at least 1 parent for 66% of patients). One parent withdrew from the study, reporting feeling overwhelmed with having a critically ill child. We received survey 1 from 38 of 44 parents (86%), survey 2 from 30 of 41 parents (73%) (not requested of 3 parents of 2 children who died in the PICU), and survey 3 from 19 of 44 parents (43%). Table 2 shows the demographics and clinical characteristics of the enrolled patients, parents who completed survey 1, and health care team participants. Subspecialists participated in the care of all 35 patients. Social workers, chaplains, and the principal investigator participated in the care of 19 (54%), 18 (51%), and 4 (11%) patients, respectively. We interviewed 14 parents of 11 patients. We completed 1 focus group with 5 nonphysician/nonnurse health care team members (eg, social worker, chaplain) and 10 one-on-one interviews with a health care team member.

Figure 2.

Study enrollment.
aSeventy-eight patients met > 1 ineligibility criterion.
bIncluded 21 Spanish-speaking patients considered ineligible pending approval of translated consent materials.
cEnrollment on hold while awaiting institutional review board approval of an amendment to the study protocol.
dOne parent withdrew after consenting to the study and one parent was never seen by the navigator because he/she was not available after providing consent and the child was discharged from the PICU the next day.

Intervention Implementation

The navigator met with all enrolled parents except 1 who withdrew and 1 who was not available after providing consent and whose child was discharged the next day. After enrollment, the navigator attempted to meet with parents an average of 7 times (median, 6; range, 1–24), or 95% of possible weekdays (median, 100%; range, 50%-100%), and successfully met with parents on 71% of possible weekdays (median, 75%; range, 0%-100%). On average, the navigator met with health care team members on 85% of the possible weekdays (median, 86%; range, 58%-100%). Thirty-three families (95%) received a PICU handbook. Of 22 patients in the PICU for 1 week or more after enrollment, 21 (95%) were offered a family meeting (1 family was not available in person or by phone). No parents wanted a family meeting, stating that the information provided during bedside conversations and daily rounds was sufficient. The navigator attempted follow-up after PICU discharge with all enrolled families. Five families were not reached (success rate 86%; 30 of 35) because they were unavailable (eg, not at bedside, not responding to their phone or messages, or their phone was not in service). The median time the navigator spent per patient per weekday was 16 minutes (range, 5–50 minutes).

Intervention Feedback

Parent Feedback. Table 3 presents the questions about intervention effectiveness and parent responses to surveys collected at PICU discharge and 3 to 5 weeks after PICU discharge. Most parents rated PICU Supports as extremely or somewhat helpful. Parents consistently noted that the intervention positively affected the quality of communication in the PICU, the timeliness of parent–health care team communication, conversations with health care team members about the parents' values and preferences, the hospital experience, and the family-centeredness of care.

Parent interview comments were overwhelmingly positive. Parents described the navigator as supportive, nonjudgmental, and respectful. They described how the navigator provided emotional support, helped them communicate with the health care team, and provided important information about the hospital or their child. Only 2 parents mentioned family meetings. One parent considered having a family meeting but decided against it after a specific issue was resolved without a formal meeting. That parent indicated that a family meeting might have been intimidating, but that having the navigator there would most likely have been helpful. The other parent noted that it was good to know that a family meeting could be organized, if needed.

The overwhelmingly positive and sustained perception from parents about PICU Supports suggests that this intervention should be studied further.

Parents expressed mixed opinions about the PICU handbook. Positive comments reflected benefits of receiving information about resources and reading about other parents' experiences. Some parents said they had not read the handbook because they felt overwhelmed or their child was not in the PICU for long. Others felt the handbook might help parents without previous PICU experience. Most parents described not using the bedside communication log, noting that health care team members signed the log inconsistently. Some parents felt that the bedside communication log might have been useful if used consistently. Only 2 parents commented that the calendar/diary was useful.

One parent reported feeling that the navigator did not adequately understand their child's medical condition. Two people felt that the navigator did not affect their PICU experience.

Health Care Team Member Feedback. When asked about benefits of PICU Supports, members of the health care team generally felt that it was valuable; that the navigator informed them about important parent issues, concerns, or questions; noted improved communication among health care team members; or described how the navigator enhanced parents' knowledge and helped parents ask questions. One health care team member spoke positively about the bedside communication log, 1 about the information sheet, and 3 about the PICU handbook. No health care team member indicated that the intervention negatively affected their workflow.

Some health care team members described inadequate integration of the navigator with other team members. Some felt that neither the navigator nor the provider information sheet provided new information about the families. One team member expressed concern about the navigator's level of medical expertise.

Members of the health care team suggested intervention refinements. Improvements focused on enhancing navigator integration with other team members. Suggestions included having the navigator participate in daily psychosocial rounds (involving social workers, chaplains, child-life specialists, and case managers); document activities in the medical record; and provide consistent feedback to health care team members about family interactions. Some suggested that the navigator be available during "off hours" (nights and weekends), and that the navigator organize more family meetings. Related to the study conduct, some suggested expanding or limiting the inclusion/exclusion criteria and enhancing staff education about the study.