EXPERIENCES OF FAMILY MEMBERS OF PATIENTS IN AN INTENSIVE CARE UNIT (ICU) DURING THE PANDEMIC: A QUALITATIVE INTERVIEW STUDY

A. Castro-Avila^1,2, Y. Villagra^3,2

¹University of York, Department of Health Sciences, York, United Kingdom, ²Facultad de Medicina Clínica Alemana Universidad del Desarrollo, Carrera de Kinesiología, Santiago, Chile, ³Hospital Regional de Antofagasta, Intensive Care Unit, Antofagasta, Chile

Background: Being the next of kin of patients in the ICU can be burdensome under normal circumstances. The pandemic, and all the changes that were enforced, might have exacerbated this experience; therefore, exploring how the next of kin experience this process in such an exceptional circumstance might help improve patient-centred care in the future.

Purpose: To explore the experiences of the next of kin of a patient in ICU during the COVID-19 pandemic.

Methods: We conducted 30-min semi-structured qualitative telephone or video call interviews with the next of kin of patients who were mechanically ventilated for >48 hours in the ICU during the pandemic in seven private and public hospitals in Chile. Patients participating in a cohort study of post-ICU outcomes provided the contact details of their next of kin at the 3-month follow-up telephone interview. We sampled next of kin to achieve maximum variation regarding the following features of the patient: age, educational level, length of ICU stay, and hospital where they were treated. A clinical psychologist trained in qualitative methods conducted the interviews and provided emotional support if/when the topics of the interview were too sensitive. The topic guide focused on three areas: communication with the medical team, emotional experience and support received, and discharge preparation. All interviews were audio recorded. Interviews were transcribed verbatim aided by the software Scrintal. Two independent researchers analysed the data following the principles of thematic analysis by Braun and Clarke (2006).

Results: Forty-nine next of kin were contacted, of which 16 were interviewed between January 2021 and January 2022. Eight (50%) were females, 8 (50%) were the partner or spouse, and 11 (69%) were next of kin of a patient with COVID-19. Visiting was suspended; therefore, all communication with the medical team happened over the phone. We identified four themes: 1) “Communication” of poor quality due to the excessive use of medical jargon, provision of inconsistent information and of variable frequency. Six interviewees considered preparation for discharge as adequate, while ten interviewees felt ill-prepared for the challenge of being back at home; 2) “Emotional burden” due to guilt, the responsibility of making decisions and the uncertainty about the patient’s evolution; 3) “Emotional support” provided by friends and family members because none of the hospitals provided formal support; and 4) “Change of roles” as a way of regaining control of the situation and provide the support the patient needs.

Conclusions: The experiences of the interviewed next of kin suggest that communication with the medical team during the pandemic was deficient, which created an additional emotional burden on family members with no access to formal in-hospital emotional support. Preparation for life in the community was seldom provided, therefore, many family members adapted their lives to provide care.

Implications: Strategies to improve care quality should focus on effective communication when face-to-face contact is not possible. The multidisciplinary team should update the family on all aspects of care, including current and future rehabilitation needs.

Funding acknowledgements: Funded by Universidad del Desarrollo, Sponsored by the Research and Development National Agency, Chile (ANID). Project number ANID-0772

Keywords:
Professional-family relations
COVID-19
Qualitative research

Topics:
COVID-19
Critical care

Did this work require ethics approval? Yes

Institution: Clínica Alemana Research and Clinical Trials Unit

Committee: Facultad de Medicina Clínica Alemana Universidad del Desarrollo

Ethics number: registration number 2020-78