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The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study
Helene Starks1, Ardith Doorenbos2, Taryn Lindhorst3
1Dept. of Bioethics and Humanities, School of Medicine, University of Washington, Seattle, WA, United States; Dept. of Pediatrics, School of Medicine, University of Washington, Seattle, WA, United States; Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA, United States.
Insights
This study found that involving palliative care teams early for children in the ICU reduced family stress symptoms. Family members reported participation was beneficial, promoting self-awareness and well-being.
Area of Science:
- Pediatric critical care research
- Palliative care interventions
- Family-centered care
Background:
- Early palliative care involvement was triggered by a length of stay of ≥8 days in the intensive care unit (ICU).
- The intervention aimed to reduce family stress symptoms by providing early support from a palliative care team.
Purpose of the Study:
- To describe the methods, baseline characteristics, and procedural burden of an intervention targeting family stress symptoms in pediatric ICU patients.
- To evaluate the impact of early palliative care involvement on family stress and participant experience.
Main Methods:
- A cluster-randomized trial was conducted with children as the unit of randomization.
- Family stress symptoms were assessed at baseline, ICU discharge, and 3 months post-enrollment.
- Questionnaire burden was measured using a 1-10 point scale, supplemented by open-ended comments.
Main Results:
- 380 family members from 220 children participated, representing 50% of eligible families.
- High retention rates (93% control, 90% intervention) were observed at 3-month follow-up.
- Questionnaire burden was low (mean scores 0.7-1.1), and comments indicated participation was beneficial, fostering reflection and a sense of being cared for.
Conclusions:
- Participant comments highlight the value of focusing research on family members of critically ill children.
- The findings underscore the importance of family-centered interventions in the pediatric ICU setting.
Background:
To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the trigger for early palliative care involvement.
Methods:
Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3months post-enrollment. Questionnaire burden was assessed on a 1-10 point scale at each time point and open-ended comments were analyzed to describe the participants' experience in the study.
Results:
380 family members of 220 children (control=115 children and 204 family members; intervention=105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being.
Conclusions:
The participants' comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.
