Abstract
BACKGROUND: Family caregivers often experience psychological distress during a critical care hospitalization, potentially compromising their ability to function effectively in a supportive role. A better understanding of the sources of family caregiver distress is needed to inform strategies to mitigate its development and impact. OBJECTIVE: To explore sources of family caregiver psychological distress during a critical care hospitalization and how caregivers' experiences may differ by their anxiety level. METHODS: Forty adult family members of patients receiving mechanical ventilation for more than 72 hours in 2 intensive care units at an academic medical center were interviewed. A qualitative directed content analysis was done. Experiences were compared by anxiety level group, defined using the Hospital Anxiety and Depression Scale: anxiety (n = 15), borderline anxiety (n = 11), and low anxiety (n=14). RESULTS: Most family members (32%) were adult children; no major demographic differences were noted across anxiety groups. Among caregivers in the anxiety group, salient factors included early unknowns around critical illness, health care team processes, care decisions made, financial and housing concerns, family dysfunction, and new responsibilities. In general, low-anxiety family caregivers did not express their concerns using language of distress but rather expressed emotion and disappointment and often took action to process their concerns. CONCLUSIONS: Factors influencing family caregiver distress during the critical care stay were wide-ranging and varied by level of anxiety. The findings highlight several key areas and potential interventions to reduce psychological distress, especially among caregivers with anxiety.