Longitudinal Trajectories of Caregiver Distress and Family Functioning After Community-Acquired Pediatric Septic Shock

Abstract

Objectives: To identify trajectories and correlates of caregiver distress and family functioning in families of children who survived community-acquired septic shock. We hypothesized that: 1) a substantial subset of families would demonstrate trajectories of persistent elevated caregiver distress and impaired family functioning 12 months after hospitalization and 2) sociodemographic and clinical risk factors would be associated with trajectories of persistent distress and family dysfunction.

Design: Prospective cohort.

Setting: Fourteen PICUs in the United States.

Patients: Caregivers of 260 children who survived community-acquired septic shock.

Interventions: None.

Measurements and main results: Caregivers completed ratings of distress on the Brief Symptom Inventory and of family functioning on the Family Assessment Device at baseline, 1, 3, 6, and 12 months after hospitalization. Results from group-based trajectory modeling indicated that 67% of the current sample was characterized by persistent low caregiver distress, 26% by persistent moderate to high distress that remained stable across 12 months (high-risk caregiver distress group), and 8% by initial high distress followed by gradual recovery. Forty percent of the sample was characterized by stable high family functioning, 15% by persistent high dysfunction across 12 months (high-risk family functioning group), 12% by gradually improving functioning, and 32% by deteriorating function over time. Independently of age, child race was associated with membership in the high-risk caregiver distress group (non-white/Hispanic; effect size, -0.12; p = 0.010). There were no significant sociodemographic or clinical correlates of the high-risk family functioning group in multivariable analyses.

Conclusions: Although the majority of families whose children survived community-acquired septic shock were characterized by resilience, a subgroup demonstrated trajectories of persistently elevated distress and family dysfunction during the 12 months after hospitalization. Results suggest a need for family-based psychosocial screening after pediatric septic shock to identify and support at-risk families.

Conflict of interest statement

Drs. Murphy, Palermo, Meert, Reeder, and Dean, Mr. Banks, and Drs. Berg, Carcillo, Chima, Holubkov, Mourani, Pollack, and Sapru, Mr. Sorenson, and Drs. Varni and Zimmerman received support for article research from the National Institutes of Health (NIH). Drs. Palermo, Meert, Reeder, Dean, Berg, Holubkov, Mourani, Pollack, Sapru, and Varni’s institutions received funding from the NIH. Mr. Banks, Dr. Carcillo, Mr. Sorenson, and Dr. Zimmerman’s institution received funding from the National Institutes of Child Health and Human Development. Mr. Banks and Mr. Sorenson disclosed government work. Ms. McGalliard disclosed work for hire. Dr. Holubkov received funding for biostatistical consulting from Physicians Committee for Responsible Medicine and DURECT, and he received funding for Data Safety Monitoring Board work from Pfizer, MedImmune, Revance, and Armaron Bio. Dr. Zimmerman’s institution received funding from Immunexpress, and he received funding from Elsevier (royalties) and the Society of Critical Care Medicine. Dr. Haaland has disclosed that he does not have any potential conflicts of interest.

Figures

Figure 1.

Participant flow. 1Participants who had at least one Brief Symptom Inventory (BSI) or Family Assessment Device (FAD). 2Participants who did not have a baseline and one additional follow-up assessment. LAPSE = Life After Pediatric Sepsis Evaluation.

Figure 2.

Longitudinal trajectories of caregiver distress based on Brief Symptom Inventory (BSI) scores. Group 1 = stable low distress (66.8% of the sample); group 2 = persistent moderate-high distress (25.7% of the sample); group 3 = high distress with recovery (7.6% of the sample). The solid line depicts observed mean scores at each time point. The dotted line depicts the modeled estimates of trajectory over time. Clinical cut-offs for the BSI are greater than 10 for men and greater than 13 for women. Of note, one item on suicidality was removed from the BSI for the purpose of this study.

Figure 3.

Longitudinal trajectories of family functioning based on Family Assessment Device (FAD) scores. Group 1 = stable high functioning (40.1% of the sample); group 2 = improving functioning (12.3% of the sample); group 3 = deteriorating functioning (32.3% of the sample); group 4 = persistent high dysfunction (15.3% of the sample). The solid line depicts observed mean scores at each time point. The dotted line depicts the modeled estimates of trajectory over time. Scores greater than 2 on the FAD indicate poor family functioning.