Family Members' Engagement in Symptom Communication, Assessment, and Management in the Intensive Care Unit: A Qualitative Study

BACKGROUND: Opportunities for communication and participation in decision making are limited for critically ill patients, but family members serving as surrogates enable empowerment of these patients.

OBJECTIVE: The aim of this study was to explore family members' engagement in symptom communication in the intensive care unit.

METHODS: A qualitative descriptive design using fieldwork methodology with triangulation of participant observation and individual interviews was conducted. Nine mechanically ventilated patients were observed in interaction with family members and clinicians in the intensive care unit. Six of the observed patients, 6 family members, and 9 clinicians were interviewed after participant observation. Field notes and transcripts were analyzed using Braun and Clarke's method of thematic analysis.

RESULTS: Family members engaged actively in symptom communication, assessment, and management, and there were barriers and facilitators to family engagement. Three main themes and 9 subthemes describing family engagement emerged: (1) intermediary role (recognize and report symptoms, provide patient information, and assist in communication), (2) independent role (provide familiarity, manage symptoms, and promote patient communication), and (3) conditions for family engagement (intensive care unit environment, relationship with the patient, and patient preferences).

DISCUSSION: Family members have unique knowledge of the patient that differs from and complement the competence of the staff, and might contribute to improved symptom communication. Future research should examine how family members can contribute to symptom communication, assessment, and management.