Family burden after critical illness: the forgotten caregivers

Abstract

Objective: To determine the incidence of primary caregiver burden in a cohort of family members of critically ill patients admitted to ICU and to identify risk factors related to its development in both the patient and the family member.

Design: Prospective observational cohort study was conducted for 24 months.

Setting: Hospital Universitario Clínico San Cecilio, Granada.

Patients: The sample was the primary caregivers of all patients with risk factors for development of PICS (Post-Intensive Care Syndrome).

Interventions: The follow-up protocol consisted of evaluation 3 months after discharge from the ICU in a specific consultation.

Main variables of interest: The scales used in patients were Barthel, SF-12, HADS, Pfeiffer, IES-6 and in relatives the Apgar and Zarit.

Results: A total of 93 patients and caregivers were included in the follow-up. 15 relatives did not complete the follow-up questionnaires and were excluded from the study. The incidence of PICS-F (Family Post Intensive Care Syndrome) defined by the presence of primary caregiver burden in our cohort of patients is 34.6% (n=27), 95% CI 25.0-45.7. The risk factors for the development of caregiver burden are the presence of physical impairment, anxiety or post-traumatic stress in the patient, with no relationship found with the characteristics studied in the family member.

Conclusions: One out of 3 relatives of patients with risk factors for the development of PICS presents at 3 months caregiver burden. This is related to factors dependent on the patient's state of health.

Keywords: Burden caregivers; Caregivers; Cuidadores; Enfermedad crítica de larga duración; Intensive care outcomes; Long-term critical illness; Post-intensive care syndrome; Post-intensive care syndrome in families; Resultados cuidados intensivos; Sobrecarga cuidadores; Síndrome post-cuidados intensivos; Síndrome post-cuidados intensivos en familiares.