Caregiver Burden and Emotional Wellbeing in Informal Caregivers to ICU Survivors: A Prospective Cohort Study

BackgroundInformal caregivers to intensive care unit (ICU) survivors may develop post-intensive care syndrome family (PICS-F), including psychological problems such as depression, anxiety and post-traumatic stress (PTS). Our primary aim was to investigate associations between caregiver burden in informal caregivers cohabiting with ICU survivors and patients’ physical and psychological outcomes.MethodsWe conducted a prospective, multicentre cohort study in four ICUs in Sweden. Adults cohabiting with ICU patients included in a previous study were eligible for inclusion. Three months post-ICU, informal caregivers received questionnaires assessing perceived caregiver burden, health-related quality of life (HRQL) and symptoms of depression, anxiety and PTS. In parallel, patients reported their physical and psychological status via validated questionnaires. The primary outcome was to compare caregiver burden in informal caregivers to patients with and without adverse physical and psychological outcomes three months post-ICU. Secondary outcomes were correlations between caregiver burden and informal caregivers’ psychological status and mental HRQL.ResultsAmong 62 included informal caregivers, 55 (89%) responded to the follow-up questionnaires. Caregiver burden was higher in informal caregivers to patients with an adverse psychological or physical outcome, compared to informal caregivers to patients without an adverse outcome, caregiver burden scale score mean (±standard deviation) 52 (11) and 41 (13) respectively (p=0.003). There was strong negative correlation between caregiver burden and informal caregivers’ mental HRQL (rs -0.74, pConclusionInformal caregivers to ICU survivors with an adverse physical or psychological outcome experience a higher caregiver burden. A higher caregiver burden correlates with worse caregiver mental HRQL. ICU follow-up programs should consider screening and follow-up of informal caregivers for mental health problems.Trial registrationThe study was registered at clinicaltrials.gov, NCT02712541 on March 18 2016.