Caregiver burden and impact on COVID-19 patient participation and quality of life one year after ICU discharge - A prospective cohort study

Objectives: to investigate changes in caregiver strain, mental health complaints and QoL in caregivers of COVID19 ICU survivors in the first year after discharge, and their associations with patients' participation and quality of life. Methods: Post-ICU COVID-19 survivors, needing inpatient rehabilitation and their informal caregivers were included. Caregiver self-administered questionnaires included quality of life, self-rated health, caregiver strain, anxiety and depression symptoms, post-traumatic stress and coping style. Patients' participation in society was assessed and quality of life. Results: 67 patients (78% male) and 57 caregivers (23.6% male) were included. Three months post-ICU, caregivers experienced caregiver strain (32%), anxiety (41%), depressive symptoms (16%) and PTSD (24%). One year post-ICU, rates decreased, still being 11%, 26%, 10% and 5%, respectively. Caregiver anxiety symptoms and self-rated health at three months were associated with worse patient levels of participation and quality of life one year after ICU discharge (p < 0.05). Conclusions: COVID-19 caregivers experience high levels of mental health complaints one year after a patient's ICU discharge. Furthermore, our results indicate that patient participation levels and quality of life one year after ICU discharge may be negatively associated by caregiver complaints. Practical implications: Counselling and routine assessment of emotional complaints and unmet needs of the informal caregiver should be incorporated and addressed in the rehabilitation treatment of (COVID-19) post-ICU patients.