Beyond survival: Lessons from a research journey in critical care recovery science

Abstract

My research journey began in the Medical Intensive Care Unit (ICU), caring for critically ill patients and questioning what happens after they leave the ICU. This curiosity evolved into a systematic program of research focused on post-intensive care syndrome (PICS) and evidence-based recovery interventions that has influenced how we approach the transition from critical illness survival to meaningful recovery. The goal of my research is to eliminate delirium, oversedation, and immobilization in intensive care, and maximize the quality of survivorship for patients and family members following critical illness. I have led investigations into ABCDEF bundle implementation, demonstrating how organizational factors like workload burden, unit leadership, and interprofessional coordination significantly influence compliance and patient outcomes. My work in telemedicine-enhanced PICS clinic follow-up care addresses the cognitive, physical, and psychological impairments that affect over half of ICU survivors. Through ICU diary and peer support program implementation, we have also demonstrated how evidence-based interventions can support both patients and family members when implementation barriers are systematically addressed. My efforts embody interdisciplinary collaboration, integrating nursing science with implementation science, health services research, and clinical psychology. My journey illustrates how bedside observations, when coupled with rigorous inquiry, collaborative partnerships, and intentionality to let patient and family voices reshape thinking, can drive meaningful scientific and practical contributions that improve outcomes for patients and families beyond survival.

Critical illness represents a life-altering experience that creates fear and uncertainty from the moment it begins. Patients often describe overwhelming distress and a profound sense of isolation, while family members suddenly become participants in an experience for which they are wholly unprepared.^1,2 Family members witness patient suffering, and can experience sadness, anger, and fear.³ For patients who survive critical illness, the journey to recovery extends far beyond the intensive care unit (ICU) doors. Life after the ICU is often burdened by multifactorial impairments including psychosocial struggles, cognitive difficulties, and physical disability that together comprise what we now know as post-intensive care syndrome (PICS).⁴ Persistent PICS impairments lead to meaningful everyday reductions in quality of life with impacts on independent functioning, employment, and healthcare utilization, which further culminate in a staggering economic toll measured in billions of dollars annually.^5–10 The burden of PICS also extends to family members (PICS-Family), who can experience psychological suffering that includes symptoms of depression, anxiety, and post-traumatic stress disorder (PTSD).¹¹ This reality is why my research program focuses not only on early outcomes during and immediately following critical illness but also explores the long-term endpoints that define life after the ICU for both patients and their families.

In this article, I describe my research program aimed at improving the lives of survivors of critical illness and their family members long after they leave the ICU and synthesize the insights I have gained throughout this research journey. As a clinical nurse specialist, my primary interest has always been translation of evidence to practice. The destination statement I crafted early in my career was to eliminate delirium, oversedation, and immobilization in intensive care, and maximize the quality of survivorship for patients and family members following critical illness. Thus, my work encompasses several interconnected areas in exploring the complex factors that shape ICU care delivery, implementing practical interventions such as ICU diaries and peer support programs, and designing and evaluating approaches to enhance patient engagement in their own recovery. This multi-faceted program targets both patients who have survived critical illness and those who witness the suffering and experience the burden of recovery alongside their loved ones. My goal is to optimize the recovery trajectories that unfold after the ICU experience, addressing not only the immediate aftermath of critical illness but also the long shadow it can cast over the months and years that follow.

GETTING EVIDENCE INTO PRACTICE: DEVELOPING THE BUNDLE AND MAKING IT STICK

My journey with the spontaneous Awakening and Breathing trial Coordination, Delirium assessment and management, and Early mobility (ABCDE) bundle began as a project manager for the MIND-USA trial, a multi-site placebo-controlled clinical trial comparing haloperidol, ziprasidone, and placebo for treating delirium during critical illness. As we designed this trial (circa 2009–2010), I was acutely aware of the problem of ICUs having a high prevalence of delirium and ICU-acquired weakness which was associated with increased mortality and long-term disability. The delirium and ICU-acquired weakness were often exacerbated by sedative administration and mechanical ventilation practices meant to support critically ill patients. Despite a decade of evidence demonstrating the hazards of delirium and the benefits of spontaneous awakening trials, spontaneous breathing trials, and early mobility, a troubling implementation gap persisted. Monitoring of delirium and level of consciousness (e.g., Richmond Agitation Sedation Scale [RASS]) remained inconsistent, and evidence-based practices proven to reduce adverse outcomes were not routinely implemented. The MIND-USA trial presented a unique opportunity to address this gap. We recognized that testing a pharmacologic intervention for delirium required standardization of the non-pharmacologic care environment across participating ICUs to not only ensure internal validity, but to also operationalize what evidence-based critical care should look like. Working collaboratively within a multidisciplinary team of investigators, I helped synthesize the evidence on awakening and breathing trial coordination, delirium assessment and management, and early mobility into an integrated framework with standardized safety screens and performance protocols. This became what we know now as the ABCDE bundle which was designed to align ICU people, processes, and technology for coordinated evidence-based care.^12–14 What we originally conceptualized as essential infrastructure for a clinical trial quickly revealed its broader value as a coordinated and standardized approach with the potential to improve patient and system level outcomes, and nurses held the key to success. It has now evolved with the development of new guidelines to become the ABCDEF bundle (Assess prevent and manage pain, Both spontaneous awakening and spontaneous breathing trials, Choice of analgesia and sedation, Delirium: assess prevent and manage, Early mobility, Family engagement and empowerment).¹⁵

This is when I first began to witness the challenges of translating evidence-based guidelines into consistent bedside practice. I was most struck by how adherence varied so dramatically. I recognized that bundle implementation was not simply a matter of education or protocol dissemination. Through systematic investigation, my work revealed that organizational realities shape care delivery in ways we had not fully appreciated. I saw workload burden and perceived bundle difficulty as primary drivers of adherence, but these surface-level factors were themselves influenced by deeper elements including the physical availability and accessibility of equipment and supplies, interactions with nurse and physician unit leadership, unit policies and protocols, and the overall milieu of the ICU environment.^16–19 These findings challenged the notion that implementation failures reflected individual level problems. Instead, they illuminated how system-level factors can either enable or inhibit evidence-based care.

My next exploration of early mobility, classified by many as the most difficult bundle component,²⁰ proved particularly revealing. I discovered that nurses, not physical therapists, were primarily responsible for early mobility coordination and process in the ICU. However, they faced significant barriers rooted in risk aversion (i.e., weighing immediate risks against long-term benefits) and situational factors like workload and collaboration challenges.²¹ Through examination of nurses' attitudes, subjective norms, perceived behavioral control, and intentions across two hospital sites, I found that differences in implementation climate and leadership were important when comparing actual mobility behaviors.²² This work highlighted how interventions can perform differently depending on local work environment, a finding with important implications for implementation strategy selection. I went on to lead state-of-the-art reviews to synthesize strategies for creating a culture conducive to ABCDEF bundle success, emphasizing interdisciplinary teamwork as a facilitator when effectively used.^23,24

Most recently, I connected bundle compliance with long-term patient outcomes. We found that higher bundle compliance was associated with less disability and better quality of life at 12 months post-ICU.²⁵ This dose-response relationship provides evidence that bundle implementation matters not just for short-term outcomes (e.g., delirium, ventilator, and hospital days) but also for the long-term outcomes (e.g., independent functioning and overall wellbeing) patients care about most.

BUILDING A BETTER UNDERSTANDING OF POST-INTENSIVE CARE SYNDROME (PICS) AND POST-INTENSIVE CARE SYNDROME FAMILY (PICS-F)

My understanding of PICS evolved through collaborative work with a multidisciplinary group of international colleagues as we interacted directly with patients and their family members about recovery experiences in the months to years following critical illness. Our investigation revealed that the current definition captured only part of the PICS reality. We identified needs extending beyond the current understanding of cognitive, physical, and mental health impairments. They described struggling with care transitions, navigating fragmented healthcare systems, managing social isolation, confronting lost identity and purpose, and coping with existential distress.^26–28 These were challenges not adequately represented by the existing frameworks. Emerging from this work was a more nuanced PICS (Figure 1) and PICS-F (Figure 2) framework representing the ICU survivorship experience.

Figure 1. A new framework for post-intensive care syndrome (PICS).

Building upon the original PICS definition encompassing cognitive, physical, and mental health impairments, this expanded conceptualization incorporates socio-economic consequences (employment difficulties, financial strain) and social isolation as additional domains. Survivors may experience one or more impairments across these interconnected domains, which interact dynamically rather than occurring in isolation. Social isolation, positioned as a bidirectional relationship between mental health and socio-economic domains, represents a cross-cutting element that both contributes to and results from PICS manifestations.

Figure 2. A new framework for post-intensive care syndrome-family (PICS-F).

Building upon the original PICS-F definition that focused solely on mental health impairments, this expanded conceptualization incorporates caregiver burden (altered family roles and responsibilities, loss of control and autonomy, navigating advocacy and care coordination), social isolation (geographic separation from support systems, limited access to specialist services, insufficient social support), and socio-economic consequences (employment problems, financial strain) as additional domains. Family members may experience one or more impairments across these interconnected domains, which interact dynamically throughout the patient's recovery trajectory.

This expanded definition of PICS and PICS-F positioned my next steps. Leading colleagues in a longitudinal analysis, we established the relationship between PICS severity and caregiver burden, confirming what our qualitative investigations had revealed – that ICU recovery is a dyadic experience, with patient impairments influencing family member wellbeing.²⁹ This finding, combined with our identification of barriers to engagement with PICS clinic transitional care (e.g., older age, distance from clinic, inadequate transportation, time constraints), demonstrated why well-intentioned interventions often failed to reach the patients who needed them most.^30,31 Facilitators to recovery included peer connection with those who understood the ICU lived experience, coordinated follow-up care that addressed the full spectrum of needs, and support navigating the fragmented post-ICU healthcare landscape.^26,27 These patient- and family-centered insights shifted my approach to intervention design to better address the complete ICU recovery experience.

Through my work on these projects and interviews with patients and family members, I learned about post-traumatic growth, the positive psychological changes individuals can experience through their struggle with crisis.³² We identified that some survivors of critical illness go on to experience post-traumatic growth, and those with PTSD were more likely to have post traumatic growth.³³ This challenged my deficit-focused thinking about PICS. We recognized that some survivors find meaning through their ICU experience and recovery journey.³⁴ This understanding, that recovery encompasses both impairments and positive change influenced my work to design interventions that both mitigate PICS and facilitate growth.

RECOVERY BEYOND THE ICU: DESIGNING ACCESSIBLE AND FEASIBLE PICS INTERVENTIONS

My collaboration in international qualitative PICS research resulted in three key insights: 1) patients and families have significant needs during ICU recovery, 2) symptom management interventions could help and lead to post-traumatic growth, but 3) access barriers prevent people from using existing programs. This led me to develop and evaluate interventions to bridge these gaps. I recognized that while PICS clinics, ICU diaries, and peer support programs had been proposed as solutions, questions remained about the core components and key characteristics (hypothesized in Table 1), design factors to ensure reach to those with barriers, and strategies to make the programs feasible for real-world teams, patients, and family members.

Table 1.

Hypothesizing core components and key characteristics of PICS clinics, ICU diary, and peer support programs

Program	Core Components critical features responsible for effectiveness that can’t be ignored, added to, or changed	Key Characteristics important but nonessential attributes which can be adapted to fit the context or recipient of the intervention
PICS clinic	multidisciplinary team systematic screening for PICS coordinated care planning and referrals	delivery modality (e.g., in person, telemedicine) team composition and staffing configuration timing and frequency of visits
ICU diary	family/patient ownership of diary narrative documentation of ICU experience family member has access to diary	format (e.g., physical book, digital) initiation timing (e.g., admission, ICU day) orientation (e.g., embedded in diary, 1:1 teaching) location of diary (e.g., bedside, taken home) patient inclusion (e.g., all, mechanical ventilation)
Peer support	survivor-to-survivor support grounded in lived experience recovery oriented bidirectional sharing	delivery modality (e.g., in person, video) timing of participation (e.g., ICU, after discharge) duration of participation (e.g., fixed, open) program structure (e.g., curriculum, unstructured) facilitation (e.g., peer lead, social work lead)

Abbreviations: ICU=intensive care unit; PICS=post-intensive care syndrome

PICS Clinics: Multidisciplinary Transitional Care and Long-Term Outcome Optimization

Investigation of PICS follow-up care revealed marked variability in clinic models as it relates to screening, staffing configurations, and service delivery across healthcare systems.³⁵ These differences, combined with the access barriers we had identified, suggested that telemedicine might offer a solution for reaching rural populations, patients experiencing disability, and those for whom travel imposed significant burden. This led to the TelePORT pilot randomized controlled trial, which examined the feasibility of delivering a telemedicine-based multidisciplinary PICS clinic intervention at 3 weeks and 3 months post-discharge from ICU hospitalization (Figure 3). This pilot study demonstrated that telemedicine-delivered PICS clinic care is feasible, acceptable, and appropriate for delivery at scale compared to usual care. We also identified that older survivors, those facing the greatest barriers to in-person follow-up, benefited most from the intervention. Beyond demonstrating feasibility, I also recognized an opportunity. We had audio-recorded patient-provider interactions during PICS clinic visits to monitor study fidelity. These recordings offered a window into what multidisciplinary teams and patients discuss when they engage in recovery care.

Figure 3. TelePORT study intervention.

TelePORT is a telemedicine-based intervention delivering coordinated, patient-centered care through integrated specialists. An ICU provider conducts medical examination, an ICU pharmacist manages medication optimization, a psychiatrist or psychologist performs neuropsychological assessment with focused psychotherapy, a nurse or social worker coordinates case management and resources, and an ICU provider leads patient-centered consultation aligned with patient goals and preferences. The multidisciplinary team delivers synchronous telemedicine consultations at 3 weeks and 3 months post-ICU discharge (or return to home if discharged to another facility), collectively addressing the sequelae of PICS.

Through qualitative analysis of these visit transcripts, working with multidisciplinary colleagues (psychology, medicine, occupational therapy, nursing, implementation science, health services research), my team explored the breadth and depth of PICS clinic care. We discovered that patients often make subjective, uninformed decisions about critical safety issues like resuming driving or stopping medications without provider input or standardized assessment.^36,37 We found that mental health professionals play a crucial role in identifying and managing the psychological complexity of PICS beyond the ICU doors, and contributing to comprehensive PICS assessment and management.³⁸ We identified that recovery clinic encounters present valuable opportunities for vaccine education and trust-building at a moment when patients are uniquely engaged with healthcare systems.³⁹ Perhaps most significantly, our analysis of multidisciplinary visit transcripts revealed that the multidisciplinary PICS clinic team addressed the full spectrum of patient-identified needs, making them ideally positioned to manage the complexity of problems experienced during this critical transitional phase.⁴⁰

ICU Diaries: Structured Journaling for Information Sharing and Sensemaking

My work implementing ICU diaries revealed that even evidence-based, patient-centered interventions face substantial institutional barriers when translated into practice. Working with colleagues across two sites, we documented the challenges teams encountered navigating procurement processes for diary materials, establishing workflows that integrated diary maintenance into existing nursing responsibilities, and addressing organizational policies.⁴¹ Through this report, we highlighted strategies to address liability concerns, patient privacy challenges, program operationalization, and program sustainability. These real-world implementation experiences illuminated that intervention success depends not merely on the ICU diary intervention itself, but on institutional readiness and systematic problem-solving at the local level.⁴²

Our subsequent investigation of diary use and usefulness demonstrated the many ways family members used diaries to cope with the ICU experience.⁴³ For family members the diary served as a stress reduction tool that helped them process emotions and gain insights during the uncertainty of critical illness. The diary was an information management system for tracking the overwhelming details of the patient’s illness trajectory, and a communication bridge connecting them with clinical staff and the patient. The diaries offered a personalized, enduring resource that families could return to repeatedly during recovery, filling memory gaps and providing a narrative thread through chaos. However, our findings underscored that realizing these benefits required deliberate attention to system-level design. In other words, diaries did not simply “work” when introduced. Diary usefulness depended on how the implementation process addressed the complex factors shaping family members' ability to engage with the diary. We found that specific system factors like staff support, easy access to diary materials, embedded instructional formats, early initiation in the ICU stay, and clear family ownership facilitated successful diary use.

Peer Support: Connecting Survivors of Critical Illness Through Shared Experience

My collaborative exploration of peer support models confirmed that survivors helping survivors offered validation and continuity not provided in traditional healthcare encounters.⁴⁴ Peer support, drawing from lived experience, normalized the recovery journey through shared experiences, facilitated care debriefing, and provided a sense of giving back.⁴⁵ However, sustaining these programs required addressing structural barriers like identifying and training peer mentors, establishing referral pathways, securing institutional support, and developing standardized approaches that could be replicated across sites.^46,47 These implementation experiences positioned my current work to develop and pilot test a remote peer support intervention combining lived experience with motivational interviewing techniques.^48,49 The goal is not simply to demonstrate efficacy, but to create scalable, sustainable models that address the barriers we now understand prevent patients from accessing the recovery support they need.

WHAT I’VE LEARNED WHILE DOING THIS WORK

During my research journey, several principles have fundamentally shaped my productivity and scholarly impact (Figure 4). These principles created a sustainable foundation for meaningful research impact.

Figure 4. Lessons learned during my journey as a nurse scientist.

These lessons emphasize interdisciplinary collaboration across diverse teams, cultivating authentic partnerships grounded in trust and complementary expertise, establishing consistent writing practices with accountability mechanisms, seeking iterative feedback on emerging work rather than waiting for perfection, and maintaining focus by prioritizing opportunities that advance a coherent research program. These lessons collectively supported a sustainable, productive, and impactful research career.

My work in the Critical Illness, Brain dysfunction, and Survivorship (CIBS) Center at Vanderbilt immersed me in multidisciplinary science, teaching me that I cannot do this work alone or only within my own discipline. Diverse perspectives and complementary expertise can strengthen research in ways single disciplines cannot achieve. Likewise, I have been fortunate that my collaborators are colleagues and friends committed to academic generosity, peer mentoring, and genuine strategic partnership.

My mentor in the Veterans Affairs Quality Scholars program taught me about energy and entropy as it relates to scientific productivity. I learned to maximize time and energy on projects and service directly linked to my research program while avoiding entropy from peripheral commitments. I also partner with experts in related areas, engage peers and trainees to explore data for mutual benefit, and delegate tasks so I can focus on the work that only I can do.

Around 2018, I started participating in writing accountability groups, which helped me advance manuscripts and grants using blocked calendar time with accountability check ins. These blocks helped me to create a consistent writing habit that has allowed me to build confidence and competence in my skill as a scientific writer. Most importantly, I learned not to waste time creating a perfect product before getting feedback. Persistent polishing, instead, led to wasted effort and lost momentum if I polished and revised in the wrong direction. Seeking iterative feedback on works in progress allows input when it can most shape thinking and strengthen the work.

CONCLUSION

Being selected as the American Association of Critical-Care Nurses (AACN) 2026 Distinguished Research Lecturer represents the honor of my career. AACN has been integral to my research journey from its earliest stages, awarding me the Sigma Theta Tau Critical Care Grant (doctoral study) and AACN Impact Research Grant for the pilot TelePORT pilot project, both foundational support that enabled the initial studies shaping my program. This journey from investigating what influences ABCDEF bundle implementation to understanding the full complexity of long-term ICU recovery has been characterized by intentional collaboration, partnerships grounded in mutual trust and complementary expertise, generous mentorship from established scientists, and seeking patient and family voices to shape my thinking about what matters most. Each phase of my work has positioned the next. I look forward to continuing this path, conducting rigorous science that bridges the gap between what we know and what we do, and mentoring the next generation of critical care scientists who will carry this work forward.