Patient and Caregiver-Derived Health Service Improvements... : Critical Care Medicine (original) (raw)

Clinical Investigations

Haines, Kimberley J. PhD, BHSc (Physiotherapy)1,2; Leggett, Nina DPT, BBiomed1; Hibbert, Elizabeth B.Physiotherapy1; Hall, Tarli DPT, BHSc1; Boehm, Leanne M. PhD, RN, ACNS-BC3; Bakhru, Rita N. MD, MS4; Bastin, Anthony J. MBBS, PhD5; Butcher, Brad W. MD6; Eaton, Tammy L. PhD, RN, FNP-BC, ACHPN7–9; Harris, Wendy RGN10; Hope, Aluko A. MD, MSCE11; Jackson, James PsyD12; Johnson, Annie APRN, ACNP-BC13; Kloos, Janet A. RN, PhD, APRN-CCNS, CCRN14; Korzick, Karen A. MD, MA15; Mactavish, Pamela BSc Pharm (Hons), MSc16; Meyer, Joel BM, BCh, DM17; Montgomery-Yates, Ashley MD18; Quasim, Tara MBChB, MD16; Slack, Andrew MBBS, MRCP, EDIC, MD (Res)17; Wade, Dorothy PhD, MSc10; Still, Mary APRN, ACNS, ANP-BS, CCRN, FCCM19; Netzer, Giora MD, MSCE20,21; Hopkins, Ramona O. PhD22–24; Mikkelsen, Mark E. MD, MSCE25; Iwashyna, Theodore J. MD, PhD26,27; McPeake, Joanne PhD, MSc, BN (Hons), RGN16,28; Sevin, Carla M. MD29; on behalf of the Society of Critical Care Medicine’s Thrive Initiative

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 Nursing, Vanderbilt University, Nashville, TN.

4 Department of Internal Medicine, Section of Pulmonary, Critical Care, Allergy and Immunology, Wake Forest University School of Medicine, Winston-Salem, NC.

5 Department of Peri-operative Medicine, St Bartholomew’s Hospital, Barts Health NHS Trust, London, United Kingdom.

6 Department of Critical Care Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA.

7 Critical Illness Recovery Center at UPMC Mercy, Department of Critical Care Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA.

8 Department of Systems, Populations and Leadership, University of Michigan School of Nursing, Ann Arbor, MI.

9 Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI.

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, Scranton, 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 Emory University Hospital (Emory Healthcare), Atlanta, GA.

20 Division of Pulmonary and Critical Care Medicine, University of Maryland School of Medicine, Baltimore, MD.

21 Department of Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, MD.

22 Department of Medicine, Pulmonary and Critical Care Division, Intermountain Medical Center, Murray, UT.

23 Center for Humanizing Critical Care, Intermountain Health Care, Murray, UT.

24 Psychology Department and Neuroscience Center, Brigham Young University, Provo, UT.

25 Division of Pulmonary, Allergy, and Critical Care Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA.

26 Department of Medicine, Division of Pulmonary & Critical Care, University of Michigan, Ann Arbor, MI.

27 Center for Clinical Management Research, VA Ann Arbor Healthcare System, Ann Arbor, MI.

28 School of Medicine, Dentistry and Nursing, University of Glasgow, Scotland, United Kingdom.

29 Department of Medicine, Division of Allergy, Pulmonary, and Critical Care Medicine, Vanderbilt University Medical Center, Nashville, TN.

Dr. Haines and Ms. Leggett are co-first authors; Drs. McPeake and Sevin are co-senior authors.

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 (http://journals.lww.com/ccmjournal).

Dr. Haines, Ms. Leggett, Dr. Mikkelsen, Dr. Iwashyna, Dr. McPeake, and Dr. Sevin were involved in conception and design. Dr. Haines, Ms. Hibbert, Ms. Leggett, and Ms. Hall were involved in data extraction and primary analysis. Dr. Haines, Ms. Hibbert, Ms. Leggett, Ms. Hall, Dr. McPeake, and Dr. Sevin were involved in analysis and interpretation. All authors were involved in drafting and revising the article for important intellectual content.

This study was funded by the Society of Critical Care Medicine. The scientific questions, analytical framework, data collection, and analyses were undertaken independently of the funder.

Drs. Haines’, Quasim’s, McPeake’s, and Sevin’s institutions received funding from the Society of Critical Care Medicine (SCCM). Dr. Boehm’s institution received funding from the National Heart, Lung, and Blood Institute (NHLBI); she is funded by National Institutes of Health (NIH)/NHLBI (K12 HL137943) as is Dr. Iwashyna (K12 HL138039). Drs. Boehm and Jackson received support for article research from NIH. Dr. Hope received funding from the American Association of Critical Care Nurses. Dr. Netzer received funding from UptoDate and Springer Press. Dr. Hopkins’ institution received funding from Intermountain Research and Medical Foundation. Dr. Iwashyna disclosed government work. Dr. McPeake’s institution received funding from The University of Cambridge; she is funded by a THIS Institute Post-Doctoral Fellowship (PD-2019-02-16). Dr. Sevin received support for article research from the Department of Defense. Drs. Haines, Boehm, Quasim, McPeake, and Sevin received funding from SCCM to undertake this work. The remaining authors have disclosed that they do not have any potential conflicts of interest.

The article does not necessarily represent the views of the U.S. government or Department of Veterans Affairs.

For information regarding this article, E-mail: [email protected]

Abstract

OBJECTIVES:

To engage critical care end-users (survivors and caregivers) to describe their emotions and experiences across their recovery trajectory, and elicit their ideas and solutions for health service improvements to improve the ICU recovery experience.

DESIGN:

End-user engagement as part of a qualitative design using the Framework Analysis method.

SETTING:

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 and identified through the collaboratives.

INTERVENTIONS:

None.

MEASUREMENTS AND MAIN RESULTS:

Eighty-six interviews were conducted. The following themes were identified: 1) Emotions and experiences of patients—“Loss of former self; Experiences of disability and adaptation”; 2) Emotions and experiences of caregivers—“Emotional impacts, adopting new roles, and caregiver burden; Influence of gender roles; Adaptation, adjustment, recalibration”; and 3) Patient and caregiver-generated solutions to improve recovery across the arc of care—“Family-targeted education; Expectation management; Rehabilitation for patients and caregivers; Peer support groups; Reconnecting with ICU post-discharge; Access to community-based supports post-discharge; Psychological support; Education of issues of ICU survivorship for health professionals; Support across recovery trajectory.” Themes were mapped to a previously published recovery framework (Timing It Right) that captures patient and caregiver experiences and their support needs across the phases of care from the event/diagnosis to adaptation post-discharge home.

CONCLUSIONS:

Patients and caregivers reported a range of emotions and experiences across the recovery trajectory from ICU to home. Through end-user engagement strategies many potential solutions were identified that could be implemented by health services and tested to support the delivery of higher-quality care for ICU survivors and their caregivers that extend from tertiary to primary care settings.