Psychosocial Support Needs and Preferences Among Family Caregivers of ICU Patients with Severe Acute Brain Injury: A Qualitative Thematic Analysis

Abstract

Family caregivers of patients with severe acute brain injury (SABI) are at risk for clinically significant chronic emotional distress, including depression, anxiety, and posttraumatic stress. Existing psychosocial interventions for caregivers of intensive care unit (ICU) patients are not tailored to the unique needs of caregivers of patients with SABI, do not demonstrate long-term efficacy, and may increase caregiver burden. In this study, we explored the needs and preferences for psychosocial services among SABI caregivers to inform the development and adaptation of interventions to reduce their emotional distress, during and after their relative's ICU admission. In this multicenter, longitudinal, qualitative study, we conducted semi-structed interviews with SABI caregivers at two time points: during their relative's ICU admission (n=30) and 2-months later (n=20). We analyzed qualitative data using a hybrid of inductive and deductive analytic techniques. We recruited family caregivers of patients with SABI from 14 U.S. neuroscience ICUs. We conducted interviews over live video. Our convenience sample of SABI caregivers (n=30) was recruited through referral by medical teams and nursing staffs across participating neuroscience ICUs. Caregivers included spouses, children, parents, and siblings to patients with SABI. We identified themes and subthemes related to participants' preferences for 1) the content of psychosocial support services, and 2) the delivery and implementation of psychosocial support services. Findings revealed a significant unmet need for psychosocial support around the time of ICU discharge and 2 months later, including: information to understand their loved one's condition and guide difficult decision-making, education regarding how best to communicate with the patient's care team and other family members, and emotional and behavioral coping skills. Our findings provide specific recommendations to justify and inform the development and adaptation of psychosocial support services for SABI caregivers in the ICU and post-discharge.