The role of family caregivers in critical illness survivor recovery at home: A qualitative study

Abstract

Background: When critical illness survivors are discharged home, they encounter a myriad of physical, emotional, cognitive, and socioeconomic challenges which can endure for an extended period of recovery. Given the extent of patient need, family members often assume the role of informal caregivers. The work inherent in this role can significantly compromise their own health, which can, in turn, influence the nature and trajectory of recovery for the survivor. Purpose: This study aimed to describe the role of informal family caregivers in patient recovery from critical illness following hospitalisation, in the context of publicly-funded healthcare and where there were no critical care follow-up or aftercare programmes. Methods: Guided by a qualitative, interpretive description approach, in-depth semi-structured interviews were conducted with 25 family caregivers of patients recovering from critical illness at home. In total, 29 interviews were conducted: 21 caregivers were interviewed once, and 4 caregivers were interviewed twice. Interview data were analyzed thematically using inductive, constant comparative methods. Results: The nature of family caregiving was grounded in the patient’s condition, whether it involved slow recovery vs 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. Conclusions: Family caregivers fulfilled a central role in managing a wide range of needs of survivors, found to be pivotal for their recovery. Policy and practical support are needed to help caregivers fulfil this role alongside meeting their own personal challenges and responsibilities.