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A6038 - Qualitative Analysis of Informal Caregivers’ Perceptions About Post-Intensive Care Syndrome (PICS) and ICU Survivor Care
Author Block: D. Allen1, S. Wang2, Y. Kheir1, D. Golovyan3, N. Fowler1, S. Lasiter4, M. G. Austrom1, M. Boustani1, B. A. Khan5; 1Indiana University, Indianapolis, IN, United States, 2Indiana University School of Medicine, Indianapolis, IN, United States, 3Indiana University, Fishers, IN, United States, 45403 HSB, UMKC School of Nursing and Health Studies, Kansas City, MO, United States, 5Indiana Univ School of Medicine, Indianapolis, IN, United States.
Rationale: The Critical Care Recovery Center (CCRC) in Eskenazi Hospital, Indianapolis, IN, was the first ICU survivor clinic in the United States. It was established in 2011 to care for ICU survivors who are at high risk for developing post-intensive care syndrome (PICS) and for their informal caregivers who provide care following an ICU stay. While there are only a few ICU survivor clinics in the U.S., the Society of Critical Care Medicine is building a national network of ICU survivor clinics. No study has examined information caregivers’ perceptions of post-ICU care.
Objective: To characterize caregivers’ perceptions of PICS and the services delivered in the Critical Care Recovery Center (CCRC).
Methods: Three focus groups with a total of 8 caregivers of ICU survivors were facilitated by study investigators to address services provided by the CCRC. Caregivers were assured of confidentiality were encouraged to speak freely. Focus groups were audiotaped and professionally transcribed. Emergent themes were identified using inductive content analysis and open codes were applied to caregivers’ narratives. Coding consensus was reached with two independent reviewers.
Results: Content analyses of the transcripts identified three major themes that caregivers of ICU survivors commonly experience: 1.Restructuring their life routines to accommodate caring for PICS; 2.Coping with patients’ cognitive and behavioral changes; and 3.Attempting to find a sense of ""new normalcy"" after the traumatic experience of seeing a family member critically ill. Caregivers evaluated the care the patient received in the ICU survivor clinic positively. On the other hand, they expressed a desire to have more post-ICU patient-centered services such as home visits by medical personnel, and caregiver-centered services including caregiver support groups and psychoeducational programs on how to provide the necessary care for patients with PICS.
Conclusions: Caregivers experience significant changes to their lives and routines when they care for patients with PICS. Learning to cope with the patients’ cognitive and behavioral changes is particularly challenging. Caregivers may benefit from post-ICU services and interventions designed to address caregivers’ emotional and educational needs.