Caregiver and care team perspectives of caregiver psychological distress and well-being during critical care hospitalization: a qualitative study.

backgroundFamily caregiver psychological distress during an older adult's critical care hospitalization can compromise their well-being and ability to function in a supportive role for patient recovery. Understanding factors influencing family caregiver distress and well-being during this period is crucial for developing approaches to support caregiver health. We sought to better understand and compare caregiver and care team member perspectives about factors and strategies that affect psychological distress and well-being among family caregivers during a critical care hospitalization.

methodsUsing a qualitative design, we conducted a directed content analysis of semi-structured interview data collected from 20 family caregivers of Veterans in critical care and 12 care team members at a US Veterans Affairs medical and surgical intensive care unit between October 2020 and July 2021. We examined factors related to caregiver psychological distress or well-being. The Consolidated Criteria for Reporting Qualitative Research guidelines were followed.

resultsFactors identified as related to caregiver psychological distress by caregivers and care team members included unfamiliarity with the health system, care team, and treatment processes; uncertainties about the illness and patient appearance; and responsibilities associated with the caregiver role. Factors related to caregiver well-being included proactive and personal communication, and a comfortable and respectful environment. Within these factors, however, there were differences in focus between caregivers and care teams. Caregivers focused on unfamiliar treatment processes, with unmet expectations around predictable communication. Few care team members indicated awareness of this concern. Other family, home, or caregiving responsibilities were described by caregivers as contributing to distress but were not mentioned by care team members. Caregivers discussed proactive communication by the care team that occurred either in-person or over the phone as emotionally supportive. Care team members emphasized in-person communication and videoconference options as beneficial and comforting to caregivers during visitor restrictions. The impact of a comfortable and respectful environment was recognized as promoting caregiver well-being by primarily non-clinical care team members.

conclusionsWe found parallels between the factors identified by caregivers and care teams related to caregiver psychological distress and well-being, yet often with differences in focus. These findings provide essential information for addressing factors contributing to distress and developing practices that support caregiver well-being.