SCCM Resource Library-Family Presence at the Bedside in the Pediatric Intensive Care Unit

Video Transcription

Thank you for this opportunity to present my work on family presence at the bedside in the Pediatric Intensive Care Unit.  My name is Mallory Smith, and I'm currently a clinical ICU fellow at Seattle Children's Hospital, as well as a postdoc research fellow at Harborview Injury Prevention and Research  Center at the University of Washington. My research interests involve understanding the role of family presence in the PICU on long-term patient and family mental health outcomes.  Prior work talking to families from the ICU show that families report psychological benefits from holding and being physically close to their child.  Additionally, families who were not able to hold their child at the end of life reported psychological harm.  In the emergency department, pain levels are higher for children undergoing procedures in the absence of their families.  Additionally, families reported their child's pain and fear were lessened because they were there.  In the anesthesia literature, there's some evidence to show that parental presence, preoperatively, may be equivocal to midazolam for alleviating anxiety.  And last, the benefits of family presence may have long-lasting benefits. Neonates with high maternal involvement in their NICU care have better 18-month neurodevelopmental  outcomes after their NICU stay. Additionally, qualitative work shows that adults who were hospitalized as a child without  family present still have psychological distress from the separation. In February 2022, SCCM released the PANDEM guidelines.  One of the key components that they propose to improving the ICU environment is to facilitate  family presence at the bedside to comfort the child and to reduce the psychological impact on the family.  We aimed to identify patient and family characteristics associated with family presence at the bedside  in the PICU, and we aim to evaluate the association between family presence at the bedside and short-term clinical outcomes like severe pain, agitation, and delirium.  We performed a retrospective cohort study in a tertiary PICU at Seattle Children's Hospital. From 2011 to 2017, Seattle Children's conducted an outcomes assessment program.  We included 523 patients enrolled in the outcomes assessment program with a mean age of 5.9 years.  These patients included children admitted for respiratory, infectious, sepsis, cardiac, surgical, and other medical indications.  The OAP collected patient and family baseline characteristics at the time of enrollment, including multiple sociodemographic variables.  This data was then combined with electronic medical record data, including bedside family presence, pain, agitation, and delirium scores.  The unit at Seattle Children's Hospital allows two caregivers to be present for 24 hours, and they also provide in-room sleeping arrangements.  Per standard of care, the bedside nurse documented who was at the bedside every two hours.  They indicated who was present by their relationship to the child, and if no one was present, they selected no one at bedside.  We calculated the percent of time any family member was present at the bedside and defined it as a binary variable with a cutoff of 80% of PICU hours.  This cutoff was chosen because it's one standard deviation below the mean. The demographic characteristics included patient age, self-identified race per primary caregiver  report, language spoken, and distance from their home to Seattle Children's Hospital. Illness characteristics included PICU length of stay, receipt of mechanical ventilation,  and maximum PEOD score. Standard variables included insurance status, highest education level attained by the primary caregiver, and zip code level distress community index score.  Baseline characteristics included patient pediatric medical complexity algorithm category.  We then examined the association of family presence at the bedside with short-term clinical outcomes, pain, agitation, and delirium.  Agitation scores were documented every two hours per the Seattle Children's Sedation Protocol via the FLAC or numeric scores.  A day of pain was greater than 25% of scores at a level of 7 or greater. Richmond agitation sedation scale scores were documented every two hours per the Seattle  Children's Sedation Protocol, and a day of agitation was also a day with greater than 25% of RAS scores greater than or equal to 2.  A four-annual assessment of pediatric delirium scores were documented Q12 hours by bedside  nurses and a day of delirium was any day with at least one CAPT score greater than or equal to 9.  For AIM-1, we performed logistic progression models to identify factors associated with family presence less than 80% of PICU hours.  Among all families, bedside presence decreased after the first week of PICU admission with an average daily presence of 93.8% of PICU hours in the first week and 77.2% in the second  week. Individual factors associated with family presence less than 80% included self-identified American Indian, Alaska Native, Asian, or Black race, public insurance, a caregiver  with less than a college degree, or an at-risk and distressed community index.  Baseline characteristics included a complex chronic condition and illness characteristics  included longer PICU length of stay, the receipt of mechanical ventilation, and higher maximum PILOD score.  We performed serial multivariable logistic regression models, including all the individual factors associated, and we included final variables if they were associated with family  presence, if they changed the odds ratio for another variable by greater than 25%, or if they improved the total fit of the model.  The final model included PICU length of stay, maximum PILOD score, complex chronic medical condition at baseline, public insurance, or an at-risk or distressed community index.  We also found that bedside presence differed by self-identified race. We recognize that race is a social construct.  Prior work shows that race modifies outcomes in pediatric critical care.  Therefore, we included race in our model as a measurement of systemic racism and years of systematic disadvantage for families of color.  We also hypothesized that institutional racism may make families of color feel less welcome at the bedside.  Therefore, we stratified our total model by white families and families of color due to limited numbers of participants within each individual race category.  For white families, only patient illness characteristics were associated with family presence less than 80%.  However, for families of color, patient illness characteristics as well as baseline and sociodemographic factors were associated with family presence.  Our second aim included identifying how family presence is associated with pain, agitation, and delirium.  After adjusting for PICU length of stay, we saw that families with family presence less than 80% had more days, excuse me, patients with family presence less than 80% had more  days of delirium than patients with families present greater than or equal to 80%. This association remained significant on multivariable analysis adjusting for age, maximum PILOD,  complex chronic condition at baseline, and ZIP code level distress community index. There was no statistically significant difference for days of agitation or days of severe pain.  This figure shows that for each day of PICU hospitalization in the first two weeks, patients with delirium on that day had lower family presence at the bedside compared to patients  without delirium. We conclude that families of children with longer PICU length of stay, higher illness  severity, public insurance, and baseline chronic complex conditions are able to be at the bedside less.  Families of color may be disproportionately affected by financial and social barriers to being at the bedside.  Bedside presence may be a screening tool for identifying families at higher risk and to more equitably allocate resources.  Also, delirium in the PICU is independently associated with lower family presence at the bedside.  And family presence may be an important mediator in the association between family demographic characteristics and worst PICU outcomes that have been previously reported.  Here's my email for any questions, and I'd like to thank the rest of my team, both at Seattle Children's and Harborview Injury Prevention and Research Center. Thank you.

Video Summary

Mallory Smith, a clinical ICU fellow at Seattle Children's Hospital, discusses the importance of family presence at the bedside in the pediatric ICU (PICU). Research has shown that family presence provides psychological benefits for both the child and the family. The study aimed to identify factors associated with family presence and evaluate the impact on short-term clinical outcomes. The retrospective cohort study included 523 patients, and the results showed that families with longer PICU stays, higher illness severity, public insurance, and baseline chronic complex conditions were present at the bedside less often. Additionally, patients with lower family presence had more days of delirium.

Asset Subtitle

Patient and Family Support, Ethics End of Life, Pediatrics, 2022

Asset Caption

INTRODUCTION: Family presence improves medical decision making in the pediatric ICU (PICU) but may also provide emotional and clinical benefits. We hypothesized that family presence would be associated with pain, agitation, and delirium during PICU admission and with post-discharge health-related quality of life (HRQL). METHODS: This is a retrospective observational cohort study of children admitted to the Seattle Children’s PICU 2011-2017 who consented for post-discharge HRQL testing. Family presence was categorized as percent of PICU time with a family member present: 90-100%, 80-89%, 70-79%, 60-69%, and < 60%. We used chi-square and ANOVA tests to compare factors associated with family presence, and linear and logistic regression to analyze associations between family presence and continuous outcomes and decline in HRQL. RESULTS: We identified 546 patients with mean age 5.9 years and mean maximum PELOD score of 3.0. Most children had family at the bedside 100% of the time (median 100%, IQR 94-100%). White patients (89%) were more likely to have ≥90% family presence compared to Latino (85%), Asian (78%), and Black (68%) patients (p < 0.05). Family presence < 90% of the time was also associated with a family language other than English, severe cognitive disability in the child, higher maximum PELOD score, longer PICU length of stay, public vs. private insurance, and higher distressed community index (DCI). Family presence was significantly associated with days of moderate-severe pain (0.8 vs. 1.1 days for ≥90% vs. < 60% presence; p=0.01), days of agitation (0.8 vs. 2.6 days for ≥90% vs. < 60% presence; p=0.001), and days of delirium (1.0 vs. 3.9 days for ≥90% vs. < 60% presence; p < 0.001). These associations remained significant after adjusting for age, maximum PELOD score, and DCI. Patients were more likely to have a clinically important decline in HRQL score from baseline to discharge (>4.5 points) if they had family present at the bedside < 90% of the time (OR 1.6, p=0.1) adjusting for age, maximum PELOD score, and DCI. CONCLUSIONS: Family presence at the bedside is lower for vulnerable patients. Lower family presence is associated with more days of pain, agitation, and delirium in the PICU, and may contribute to post-discharge HRQL decline. Supporting family presence at the bedside may improve patient outcomes.

Meta Tag

Content Type Presentation

Knowledge Area Patient and Family Support

Knowledge Area Ethics End of Life

Knowledge Area Pediatrics

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Communication

Tag Ethics and End of Life

Tag Pediatrics

Tag Delirium

Year 2022

Keywords

family presence

pediatric ICU

psychological benefits

short-term clinical outcomes

retrospective cohort study

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