Kimberley J Haines1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29, Elizabeth Hibbert4, Nina Leggett4, Leanne M Boehm5, Tarli Hall4, Rita N Bakhru6, Anthony J Bastin7, Brad W Butcher8, Tammy L Eaton8,9, Wendy Harris10, Aluko A Hope11, James Jackson12, Annie Johnson13, Janet A Kloos14, Karen A Korzick15, Pamela Mactavish16, Joel Meyer17, Ashley Montgomery-Yates18, Tara Quasim16,19, Andrew Slack17, Dorothy Wade10, Mary Still20, Giora Netzer21,22, Ramona O Hopkins1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29, Theodore J Iwashyna26,27, Mark E Mikkelsen28, Joanne McPeake16,19, Carla M Sevin29. 1. Department of Physiotherapy, Western Health, Sunshine Hospital, Melbourne, VIC, Australia. 2. Department of Critical Care, School of Medicine, The University of Melbourne, Melbourne, VIC, Australia. 3. School of Physiotherapy, The University of Melbourne, Melbourne, VIC, Australia. 4. Department of Physiotherapy, Western Health, Melbourne, VIC, Australia. 5. School of Nursing, Vanderbilt University, Nashville, TN. 6. Department of Internal Medicine, Section of Pulmonary, Critical Care, Allergy and Immunology, Wake Forest University School of Medicine, Winston Salem, NC. 7. Department of Perioperative Medicine, St Bartholomew's Hospital, Barts Health NHS Trust, London, United Kingdom. 8. Department of Critical Care Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA. 9. School of Nursing, University of Pittsburgh, Pittsburgh, PA. 10. University College London Hospitals NHS Foundation Trust, London, United Kingdom. 11. Division of Critical Care Medicine, Albert Einstein College of Medicine of Yeshiva University, New York, NY. 12. Vanderbilt University Medical Center, Nashville, TN. 13. Pulmonary and Critical Care Medicine, Mayo Clinic, Rochester, MN. 14. University Hospitals Cleveland Medical Center, Cleveland, OH. 15. Pulmonary and Critical Care Medicine, Geisinger Medical Center, Mechanicsville, PA. 16. Glasgow Royal Infirmary, NHS Greater Glasgow and Clyde, Scotland, United Kingdom. 17. Guy's & St Thomas' NHS Foundation Trust, London, United Kingdom. 18. Division of Pulmonary, Critical Care and Sleep Medicine, University of Kentucky, Lexington, KY. 19. School of Medicine, Dentistry and Nursing, University of Glasgow, Scotland, United Kingdom. 20. Emory University Hospital (Emory Healthcare), Atlanta, GA. 21. Division of Pulmonary and Critical Care Medicine, University of Maryland School of Medicine, Baltimore, MD. 22. Department of Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, MD. 23. Department of Medicine, Division of Pulmonary and Critical Care, Intermountain Medical Center, Murray, UT. 24. Center for Humanizing Critical Care, Intermountain Health Care, Murray, UT. 25. Psychology Department and Neuroscience Center, Brigham Young University, Provo, UT. 26. Department of Medicine, Division of Pulmonary and Critical Care, University of Michigan, Ann Arbor, MI. 27. Center for Clinical Management Research, VA Ann Arbor Healthcare System, Ann Arbor, MI. 28. Division of Pulmonary, Allergy, and Critical Care Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA. 29. Department of Medicine, Division of Allergy, Pulmonary, and Critical Care Medicine, Vanderbilt University Medical Center, Nashville, TN.
Abstract
OBJECTIVES: Investigate the challenges experienced by survivors of critical illness and their caregivers across the transitions of care from intensive care to community, and the potential problem-solving strategies used to navigate these challenges. DESIGN: Qualitative design-data generation via interviews and data analysis via the framework analysis method. SETTING: Patients and caregivers from three continents, identified through the Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support groups). SUBJECTS: Patients and caregivers following critical illness. INTERVENTIONS: Nil. MEASUREMENTS AND MAIN RESULTS: From 86 interviews (66 patients, 20 caregivers), we identified the following major themes: 1) Challenges for patients-interacting with the health system and gaps in care; managing others' expectations of illness and recovery. 2) Challenges for caregivers-health system shortfalls and inadequate communication; lack of support for caregivers. 3) Patient and caregiver-driven problem solving across the transitions of care-personal attributes, resources, and initiative; receiving support and helping others; and acceptance. CONCLUSIONS: Survivors and caregivers experienced a range of challenges across the transitions of care. There were distinct and contrasting themes related to the caregiver experience. Survivors and caregivers used comparable problem-solving strategies to navigate the challenges encountered across the transitions of care.
OBJECTIVES: Investigate the challenges experienced by survivors of critical illness and their caregivers across the transitions of care from intensive care to community, and the potential problem-solving strategies used to navigate these challenges. DESIGN: Qualitative design-data generation via interviews and data analysis via the framework analysis method. SETTING: Patients and caregivers from three continents, identified through the Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support groups). SUBJECTS: Patients and caregivers following critical illness. INTERVENTIONS: Nil. MEASUREMENTS AND MAIN RESULTS: From 86 interviews (66 patients, 20 caregivers), we identified the following major themes: 1) Challenges for patients-interacting with the health system and gaps in care; managing others' expectations of illness and recovery. 2) Challenges for caregivers-health system shortfalls and inadequate communication; lack of support for caregivers. 3) Patient and caregiver-driven problem solving across the transitions of care-personal attributes, resources, and initiative; receiving support and helping others; and acceptance. CONCLUSIONS: Survivors and caregivers experienced a range of challenges across the transitions of care. There were distinct and contrasting themes related to the caregiver experience. Survivors and caregivers used comparable problem-solving strategies to navigate the challenges encountered across the transitions of care.
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