Evidence map›Paper›PMID 41958891›Full record

ArticleCHEST critical care2026

Surrogate Perspectives on the Communication and Support Processes That Enable Them as Active Decision-Makers Across Chronic Critical Illness.

Amanda C Moale, Douglas B White, Bryan J McVerry, Robert Grier, Chareeni E Kurukulasuriya, Mikhaila N Layshock, Svea Cheng, Robert M Arnold, Maya I Ragavan, Renee D Boss and 1 more

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Article in CHEST critical care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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5 · Who and what money

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11 authors.

Amanda C MoaleDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Douglas B WhiteDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Bryan J McVerryDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Robert GrierDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Chareeni E KurukulasuriyaDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Mikhaila N LayshockDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Svea ChengDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Robert M ArnoldDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Maya I RagavanDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Renee D BossDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Judy C ChangDivision of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.

Funding

Regulation of Cardiolin Byosynthesis in Epithelial InjuryP01HL114453 · NHLBI · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI MALLAMPALLI, RAMA K · 2014 to 2023
$21.3M
Translational Training Program in Pulmonary Biology and MedicineT32HL007563 · NHLBI · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI Melanie Koenigshoff · 1985 to 2026
$12.3M
Mentored Patient Oriented Research in Improving Surrogate Decision Making for Patients with Advanced Respiratory FailureK24HL148314 · NHLBI · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI Douglas B White · 2019 to 2026
$944k
NHLBI NIH HHS K24 HL148314NHLBI NIH HHS P01 HL114453NHLBI NIH HHS T32 HL007563
6 · The paper itself

Abstract

backgroundChronic critical illness (CCI) is marked by persistent respiratory failure, with patients commonly receiving tracheostomies for ongoing ventilation across ICU and post-ICU settings. Well-documented communication and support breakdowns across CCI worsen family distress and may perpetuate care misaligned with patient values and goals. Yet, effective interventions supporting surrogate decision-makers throughout CCI are lacking. RESEARCH QUESTION: What are the communication and support processes that families view as essential to enabling them as active surrogate decision-makers across the patient's trajectory to better inform future intervention development? STUDY DESIGN AND

methodsWe conducted semistructured interviews with surrogate decision-makers of patients who received a tracheostomy for persistent respiratory failure after an acute illness at 2 time points (first, 2 weeks to 6 months after tracheostomy; second, weeks to months later). We used deductive and inductive coding, followed by thematic analysis of interview transcripts.

resultsWe interviewed 23 surrogate decision-makers of 19 medical and surgical patients with moderate-high illness severity (mean Acute Physiology and Chronic Health Evaluation II score, 21.5 ± 5.3). Five themes were generated from family perspectives, representing the essential communication and support processes to enable families as active decision-makers across time and settings in CCI. They included being (1) engaged proactively during transitions; (2) connected to tailored practical resources that enable their presence, engagement, and space for self-care across the CCI trajectory; (3) actively engaged in ongoing and iterative anticipatory guidance and reassessment; (4) recognized as the expert and advocate for the patient; and (5) treated with compassion and respect.

interpretationOur findings suggest that future interventions should deliver decisional support in CCI through longitudinal, relationship-centered strategies integrating iterative care planning, compassionate and inclusive family engagement, and tailored practical resources as core intervention components.

Indexed as

chronic critical illnessdecision makingfamily caregivingpersistent respiratory failureprolonged mechanical ventilationsharedsurrogate decision-makerstracheostomy

Identifiers

PMID41958891
PMCPMC13060019

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.