Caregiver Well-Being Is Dependent On Caregiver Mastery, Social Support And Participation In Valued Activities: Towards Recover Study

Abstract

Abstract : Rationale and Objective: Individuals who survive a long-stay in the intensive care unit (ICU) often experience ICU Acquired weakness, neuropsychological dysfunction and poor quality of life outcomes. Many need assistance from a family caregiver with everyday activities and medical care from the ICU through to community re-integration. As family caregivers take on this new and unfamiliar role, many will experience negative health outcomes. The objective of this research was to identify patient and caregiver related factors that influenced caregiver emotional health and quality of life during the first year post-ICU discharge. Method: We enrolled patients (mechanically ventilated for over one week) and family caregivers (who provide and/or coordinate post-hospital care) at 10 hospitals across Canada. Caregivers were assessed 7 days and 3, 6, and 12 months after survivors’ ICU discharge and completed the following assessments: Centre for Epidemiological Studies Depression scale (CES-D), Positive Affect Scale (PAS), SF-36, Caregiver Assistance Scale, Care-giving Impact Scale, Personal Gain Scale, Mastery Scale, and Social Support Survey. Patients completed a variety of assessments including the Functional Independence Measure (FIM) and the Beck Depression Inventory II (BDI). Results: Caregivers (n=330) were female (69.5%), caring for a spouse (56.9%), and 53 (SD 13.4) years of age. Modeling the dependent variables over the one year follow-up period suggests caregivers’ mental health outcomes (CES-D and the mental component of the SF-36 (MCS) improve between 7-days and 3-months post-ICU discharge and then remain relatively stable. Psychological well-being (PAS) and the physical component score from the SF-36 (PCS) are stable over time. Multivariable longitudinal modeling identified variables related to positive caregiver outcomes. Caregivers with more social support report better scores on all outcomes. More mastery and less of an impact on lifestyle are associated with better mental health outcomes. Caregivers who gain more personally as a result of providing care also report more psychological well-being. Patient age, ICU length-of-stay, FIM and BDI were not related to any caregiver outcomes. Conclusions: Programs to support caregivers should begin within the first 3-months post-ICU discharge and continue as survivors’ reintegrate into community living. Interventions should assist caregivers to access social support, maintain participation in valued activities, gain positive experiences from providing care, and contribute to their mastery