Education and support needs during recovery in acute respiratory distress syndrome survivors

INTRODUCTION: There is a limited understanding of the long-term needs of survivors of the acute respiratory distress syndrome (ARDS) as they recover from their episode of critical illness. The Timing it Right (TIR) framework, which emphasizes ARDS survivors' journey from the ICU through to community re-integration, may provide a valuable construct to explore the support needs of ARDS survivors during their recovery. METHODS: Twenty-five ARDS survivors participated in qualitative interviews examining their needs for educational, emotional and tangible support for each phase of the TIR framework. Transcripts were analyzed using framework methodology. RESULTS: ARDS survivors' support needs varied across the illness trajectory. During the ICU stay, survivors were generally too ill to require information. The transfer to the general ward was characterized by anxiety surrounding decreased surveillance and concern for future health and treatment. Information needs focused on the events surrounding the acute illness, while physical and emotional needs revolved around physical therapy and psychological support for depression and anxiety. As patients were preparing for hospital discharge, they expressed a desire for specific information about the recovery and rehabilitation process following an episode of ARDS (e.g., outpatient physiotherapy, long-term sequela of the illness). Once in the community, survivors wanted guidance on home care, secondary prevention, and ARDS support groups. CONCLUSIONS: Our findings support the need for future educational and support interventions to meet the changing needs of ARDS survivors during their recovery.