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

Materials and Methods Setting and Participants

We conducted this study at a university-based, tertiary care children's hospital with a 40-bed PICU and a 36-bed cardiac ICU. (Hereinafter, "PICU" refers to the PICU and cardiac ICU). The hospital's institutional review board approved the study, which was carried out according to the ethical standards set forth in the Declaration of Helsinki.

Participants included patients, parents, and health care team members. Eligible health care team members included PICU bedside nurses, advanced practice registered nurses, attending physicians, fellow physicians, social workers, chaplains, case managers, and child-life specialists. Eligible patients were younger than 18 years, had English- or Spanish-speaking parents, were likely to require more than 24 hours of PICU care from the time of enrollment (determined by the PICU attending physician), and did not have suspected nonaccidental trauma. We also included patients with a Pediatric Index of Mortality 2 score of 4% or higher because those patients have more complicated PICU admissions.[16] A study team member (excluding the principal investigator) invited enrollment from parents of eligible patients and obtained parental written consent. Patients between 12 and 17 years of age provided written assent unless they were medically or developmentally incapable of doing so (as determined by the PICU attending physician). Parents of children readmitted to the PICU during the study could choose to receive the intervention but were not reenrolled. Parents received a $25.00 gift card after returning the survey sent 3 to 5 weeks after PICU discharge. Health care team members were recruited by email or in person and provided written consent.


PICU Supports was adapted from an adult ICU navigator-based intervention[17] founded on cognitive-emotional decision-making theory,[18] the Ottawa Decision Support Framework,[19,20] and empirical research.[21] PICU Supports was developed using a stakeholder engagement process involving PICU patients' parents, health care team members, and researchers.[15] PICU Supports is intended to provide emotional, communication, decision-making, information, and transition (ie, transition out of the PICU or death) support.

PICU Supports includes navigator activities (Figure 1): (1) an initial meeting with the patient's health care team; (2) an initial meeting with the patient's parents; (3) weekday meetings with the patient's parents and a health care team member; (4) offering and coordinating formal weekly family meetings between the family and the health care team for patients in the PICU for 1 week or more; (5) preparing parents for patient transitions out of the PICU (to a non-PICU hospital bed, a chronic or rehabilitation facility, home, or death); and (6) a post-PICU discharge parent check-in (with additional check-ins as needed). PICU Supports also includes ancillary tools. For parents, these include a PICU handbook (developed by parents) with information about the PICU environment and therapies used, a calendar/diary, and a question prompt list (questions parents may want to ask members of the health care team); a bedside communication log to track non-PICU health care team visits (eg, subspecialists or physical therapists); and a bereavement packet for parents whose child dies in the PICU. For clinicians, the navigator gives PICU physicians and/or advanced practice registered nurses a weekly provider information sheet with relevant psychosocial information or identified family needs and an end-of-life care checklist to remind them about end-of-life care activities. Components of PICU Supports are delivered on the basis of individual patient, parent, and family needs and desires and are designed to augment existing services.[15]

Figure 1.

The Pediatric Intensive Care Unit (PICU) Supports intervention. Ovals describe patient events. Rectangles describe navigator activities.
aCan include other family members depending on need.
bInitial family meetings and meetings of health care team occur separately.
cAncillary tools: PICU handbook, provider information sheet, bedside communication log, end-of-life checklist, bereavement packet.

Navigator Training

The PICU Supports navigator was trained to the master's degree level in marriage and family therapy, child development, and family studies, with inpatient and outpatient counseling experience. Navigator training (> 120 hours) included review with the principal investigator of a manual describing the intervention; "role-play" exercises for each PICU Supports component using 5 clinical case scenarios (a baby with a respiratory illness, a child admitted after trauma, a medically complex child with decision-making needs, a medically complex child who dies, and a dying cancer patient); dedicated time attending PICU daily rounds and shadowing PICU health care providers; and self-study.

Few PICU-specific communication intervention studies exist.

Parent Data

Table 1 describes the content of the parent surveys, which were available in English and Spanish.[10,17,22–33] Surveys 1, 2, and 3 were collected at enrollment, PICU discharge, and 3 to 5 weeks after PICU discharge, respectively. Some parents also participated in an optional audio-recorded one-on-one semistructured interview at PICU discharge, during which study staff used an interview guide (available on request) to ask about the acceptability and efficacy of PICU Supports and requested suggestions for program improvement.

Patient Data

We reviewed medical records for patient demographics and clinical events during the PICU admission.

Health Care Team Data

Members of the health care team participated in a study team member–moderated audio-recorded semistructured focus group or one-on-one interview midway through or after completing parent enrollment. Using a focus group/interview guide (available on request), we asked members of the health care team to comment on PICU Supports, the benefits of PICU Supports, and the impact of PICU Supports on daily work flow and to suggest program improvements. Each health care team member completed a written questionnaire asking for demographic information.

Navigator Data

The navigator recorded efforts to meet with families and noted if the family received a PICU handbook, when a family was offered a family meeting, if a family meeting occurred, and if a post-PICU discharge check-in was attempted and accomplished. The navigator estimated the time spent supporting each family, including time with the health care team.


We assessed the feasibility of studying the intervention by determining the proportion of invited parents who consented to participate in the study and the proportion of parents who completed study surveys.

We assessed the feasibility of intervention implementation by tracking navigator adherence to a priori identified intervention components: meeting with parents and health care teams, providing parents the PICU handbook, offering weekly family meetings for patients in the PICU for 1 week or more, and checking in with parents after PICU discharge.

We assessed perceptions of the intervention using parent responses to items on surveys 1 and 2 and input from parent and health care team focus groups and interviews. This pilot study was not powered to assess the intervention's impact on parent outcomes (eg, parental psychological morbidity; see Table 1); therefore, these data are not reported.

Data Analysis

Analyses involved descriptive statistics (Microsoft Excel 2013, version 15.0.4937.1000) without formal statistical hypothesis testing. Analysis of intervention implementation took into account attempts by the navigator to meet with parents and successful meetings between the navigator and parents. The times the navigator attempted to meet with parents, in person or by phone, each weekday were reported as "attempted meets." The times the navigator successfully met with parents were reported as "actual meets." The percentage of attempted meetings was calculated as the number of attempted meets divided by the total number of possible opportunities the navigator had to meet parents (eg, for a patient in the PICU for 4 weekdays, the total number of possible opportunities would be 4). We used the same approach to calculate the percentage of actual meetings.

We used direct content analysis to analyze focus group and interview transcripts.[34] Audio recordings were transcribed verbatim, and transcripts were loaded into qualitative analysis software, Dedoose (version 5.2.0 [2014]; SocioCultural Research Consultants, LLC []). We identified excerpts (blocks of text with similar content) and assigned them to the following content areas: (1) general intervention or navigator comments, (2) comments about what worked or did not work well with the intervention, (3) suggested intervention improvements, and (4) comments about study conduct. Two people reviewed the transcripts and created separate code lists, then narrowed the code list by eliminating redundancy and combining similar codes. The revised code list was used to code the remaining transcripts, creating new codes as necessary. To member-check our findings (one approach to assess validity[35]), a parent study team member (a parent of a previously critically ill child not enrolled in the study) reviewed the transcripts, code list, and results.

PICU Supports seeks to provide emotional, communication, decision-making, information, and transition (ie, transitions out of the PICU or death) support.