Background

Many patients confront physical, cognitive, and emotional problems after acute respiratory distress syndrome (ARDS). No proven therapies for these problems exist, and many patients manage new disability and recovery with little formal support. Eliciting patients’ adaptations to these problems after hospitalization may identify opportunities to improve recovery.

Objectives

To explore how patients adapt to physical, cognitive, and emotional changes related to hospitalization for ARDS.

Methods

Semistructured interviews were conducted after hospitalization in patients with ARDS who had received mechanical ventilation. This was an ancillary study to a multicenter randomized controlled trial. Consecutive surviving patients who spoke English, consented to follow-up, and had been randomized between November 12, 2017, and April 5, 2018 were interviewed 9 to 16 months after that.

Results

Forty-six of 79 eligible patients (58%) participated (mean [range] age, 55 [20-84] years). All patients reported using strategies to address physical, emotional, or cognitive problems after hospitalization. For physical and cognitive problems, patients reported accommodative strategies for adapting to new disabilities and recuperative strategies for recovering previous ability. For emotional issues, no clear distinction between accommodative and recuperative strategies emerged. Social support and previous familiarity with the health care system helped patients generate and use many strategies. Thirty-one of 46 patients reported at least 1 persistent problem for which they had no acceptable adaptation.

Conclusions

Patients employed various strategies to manage problems after ARDS. More work is needed to identify and disseminate effective strategies to patients and their families.

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