(783) Family at the Forefront: The Pivotal Role of Family Caregivers on Critical Illness Recovery at Home

Introduction: When critical illness survivors are discharged home, they frequently encounter a myriad of challenges that span physical, emotional, socioeconomic, and cognitive domains during an extended recovery. Given the extent of patient need, family members often assume the role of informal caregivers. Concurrently, these family caregivers often experience their own health issues, which can, in turn, influence the nature and trajectory of recovery for the survivor. This study aimed to describe the role of informal family caregivers in patient recovery from critical illness following hospitalization in British Columbia, Canada, a country with relatively robust health and social programs.

Methods: This patient-oriented research included patient partners as research team members and was guided by a qualitative, interpretive description approach, and involved in-depth, semi-structured interviews with family caregivers of patients recovering from critical illness at home. Interview data were analyzed thematically using inductive, constant comparative methods.

Results: Family caregivers (n=25, mean age 55 years, 68% women) included spouses (44%), adult children (32%), parents (16%) and siblings (8%) of patients (mean age 58 years, median APACHE II = 19, median ICU length of stay = 11 days) discharged from a mixed ICU. The nature of family caregiving was contextually grounded in the patient’s condition, whether it involved slow recovery versus stagnation or decline, and the caregiver’s capacity to engage in care. Caregivers influenced patient recovery by 1) assuming daily living and physical care responsibilities; 2) providing motivational and emotional support; 3) searching for and gathering information; 4) monitoring and supervising health and treatment; and 5) managing medical appointments and advocating for resources. Greater patient needs for assistance coupled with fewer caregiver supports appeared to worsen caregiver strain.

Conclusions: Family caregivers fulfilled a central role in managing the comprehensive needs of survivors, which was pivotal for survivor recovery. However, the dual burden of caregiving and their own personal challenges and responsibilities underscores the urgent need for policies and programs supporting these caregivers.