Well-being in informal caregivers of survivors of acute respiratory distress syndrome *

Objective: With limited community services, the complex rehabilitation period after critical illness is often the responsibility of family members who, as a result, may experience negative health outcomes. The objectives of this research were to a) identify aspects of the caregiving situation that are associated with caregivers' experiences of emotional distress and psychological well-being; and b) compare health-related quality of life of informal caregivers to survivors of acute respiratory distress syndrome (ARDS) with age- and gender-matched population values.

Design: Cross-sectional survey of informal caregivers to ARDS survivors.

Setting: Toronto, Ontario, Canada.

Patients: Informal caregivers were individuals who were primarily responsible for providing and/or coordinating ARDS survivors' posthospital care and were not paid to do so.

Interventions: None.

Measurements and Main Results: The dependent variables were emotional distress, psychological well-being, and health-related quality of life. They were evaluated by the Center for Epidemiologic Studies Depression Scale, the Positive Affect Scale, and Medical Outcomes Study Short Form 36, respectively. Independent variables included severity of illness indicators, patient depression (Beck Depression Inventory II), aspects of the caregiving experience (care provided, lifestyle interference, personal gain), and psychosocial resources (mastery and social support). Caregivers experienced more emotional distress when they experienced more lifestyle interference, had lower levels of mastery, and were caring for ARDS survivors with more depressive symptoms (F_3,42 = 15.69, p < .001, adjusted R² = .50). In contrast, caregiver psychological well-being was associated with personal gains as a result of providing care and having more mastery and social support (F_4,41 = 9.40, p < .001, adjusted R² = .43). Caregivers reported poorer health-related quality of life across all domains of the Medical Outcomes Study Short Form 36 compared with age- and gender-matched population values.

Conclusions: Informal caregivers experience negative health outcomes that persist almost 2 yrs after ARDS. New approaches, such as family-centered rehabilitation, caregiver education, improved respite, and home care, may benefit informal caregivers.