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A Qualitative Investigation of Patients’ and Caregivers’ Experiences of Severe Sepsis*

Gallop, Katy H. MSc1; Kerr, Cicely E. P. PhD1; Nixon, Annabel PhD1; Verdian, Lara MSc, MBA2; Barney, Joseph B. MD, MSPH3; Beale, Richard J. MB, BS, FRCA4

doi: 10.1097/CCM.0000000000000613
Clinical Investigations

Objectives: To explore and describe the subjective experiences and long-term impact of severe sepsis on survivors of severe sepsis and their informal caregivers (e.g., spouse or family member) through qualitative research methods.

Design: A qualitative exploratory study using semi-structured interviews with survivors of severe sepsis and their informal caregivers in the United Kingdom and United States. Participants also completed a demographic background form and sites provided medical history details. Transcripts were analyzed using a thematic analysis approach.

Setting: Patients were recruited from a large National Health Service hospital in the United Kingdom and a level 1 trauma center hospital in the United States. Caregivers were recruited through eligible patients. Interviews were conducted either face to face in participant’s homes or another convenient location or over the telephone.

PatientsPatients who were 18 years old or older and had experienced an episode of severe sepsis in the previous 12 months were recruited by clinical staff in each hospital. Caregivers were family members or friends who had provided informal care for the patient after their episode of severe sepsis.

Interventions: None.

Measurements and Main Results: Thirty-nine interviews were conducted with 22 patients and 17 informal caregivers (of these 28 were conducted face-to-face and 11 by telephone). Five main themes were identified in the qualitative analysis: awareness and knowledge of severe sepsis; experience of hospitalization, ongoing impact of severe sepsis; impact on caregivers; and support after severe sepsis. Experiences varied depending on the patients’ health prior to the severe sepsis, with the worst affected reporting lasting impacts on multiple aspects of their life.

Conclusions: The study extends what was understood about severe sepsis from the patients’ and caregivers’ perspectives from the previous limited literature. Caregivers as well as patients reported enduring impact. The study also identified problems of lack of awareness of diagnosis and understanding of severe sepsis by patients and caregivers and difficulties accessing appropriate healthcare providers and ancillary services after discharge from hospital.

Supplemental Digital Content is available in the text.

1ICON Patient Reported Outcomes, Icon Plc, Oxford, United Kingdom.

2Actelion Pharmaceuticals UK Ltd, London, United Kingdom.

3Division of Pulmonary, Allergy and Critical Care Medicine, University of Alabama at Birmingham Hospital, Birmingham, AL.

4Department of Intensive Care, Guys and St Thomas’ Hospital, London, United Kingdom.

* See also p. 479.

This work was performed at Oxford Outcomes, an Icon Plc Company.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s website (

Supported, in part, by Eisai.

Ms. Gallop and Dr. Nixon were employed by Icon Plc. Dr. Kerr is employed by Icon Plc. Their institutions received support for article writing/review from Eisai (Icon Plc was contracted by Eisai to conduct the work, which included development of this article to disseminate the results), support from Eisai Inc (institution consulted for various pharmaceutical clients; consultancy provided in the area of Patient Reported Outcomes), and support for article preparation from various pharmaceutical consultancy clients for dissemination of project work conducted by Icon Plc on their behalf (on all occasions, payment has been for substantial time spent developing article content, with authorship compliant with International Committee of Medical Journal Editors guidelines). Dr. Verdian was formerly employed by Eisai Europe (who sponsored the study), received support for article research from Eisai Europe, and disclosed work for hire. Dr. Barney’s institution received grant support from Icon Plc (grant support for data acquisition). Dr. Beale’s institution received grant support and an honorarium.

Address requests for reprints to: Cicely E P Kerr, PhD, ICON Patient Reported Outcomes, Icon Plc, Seacourt Tower, West Way, Oxford, OX2 0JJ, United Kingdom. E-mail:

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