Many patients confront physical, cognitive, and emotional problems after acute respiratory distress syndrome (ARDS). No proven therapies for these problems exist, and many patients manage new disability and recovery with little formal support. Eliciting patients’ adaptations to these problems after hospitalization may identify opportunities to improve recovery.
To explore how patients adapt to physical, cognitive, and emotional changes related to hospitalization for ARDS.
Semistructured interviews were conducted after hospitalization in patients with ARDS who had received mechanical ventilation. This was an ancillary study to a multicenter randomized controlled trial. Consecutive surviving patients who spoke English, consented to follow-up, and had been randomized between November 12, 2017, and April 5, 2018 were interviewed 9 to 16 months after that.
Forty-six of 79 eligible patients (58%) participated (mean [range] age, 55 [20-84] years). All patients reported using strategies to address physical, emotional, or cognitive problems after hospitalization. For physical and cognitive problems, patients reported accommodative strategies for adapting to new disabilities and recuperative strategies for recovering previous ability. For emotional issues, no clear distinction between accommodative and recuperative strategies emerged. Social support and previous familiarity with the health care system helped patients generate and use many strategies. Thirty-one of 46 patients reported at least 1 persistent problem for which they had no acceptable adaptation.
Patients employed various strategies to manage problems after ARDS. More work is needed to identify and disseminate effective strategies to patients and their families.
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This article has been designated for CE contact hour(s). The evaluation demonstrates your knowledge of the following objectives:
Analyze the difference between recuperative and adaptive strategies of recovery.
Identify potential adaptive strategies that can be suggested for use by patients after acute respiratory distress syndrome (ARDS).
Describe the roles of family and social supports in promoting adaptation and recuperation
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Survivors of acute respiratory distress syndrome (ARDS) and mechanical ventilation experience persistent physical limitations, cognitive impairment, and emotional difficulties.1–3 Despite strength and pulmonary function recovery, more than half of patients still report decreases in physical function 2 years after ARDS.4,5 Cognitive impairment at 1 year is estimated to occur in 25% to 78% of patients and includes issues with memory, executive function, and verbal fluency.6–8 Depression, anxiety, and posttraumatic stress disorder are common and long-lasting; approximately 25% of survivors report posttraumatic stress disorder 5 years after ARDS.4,9
No proven therapies to prevent or systematically treat these problems are available.10,11 Many patients and families navigate life after ARDS on their own. Reports by patients and family members have helped identify the problems ARDS survivors face12–14 and the services they use or report needing.15 Understanding how they adapt to problems and what solutions or resources they draw upon to address disability may reveal opportunities to improve recovery after ARDS.
Many patients and families navigate life after ARDS on their own.
This study elicited patients’ adaptations to ARDS-related changes by interviewing survivors 9 to 16 months after diagnosis. We explored how patients adapted to physical, cognitive, and emotional changes brought about or exacerbated by their hospitalization. We used semistructured interviews to capture the breadth of patients’ strategies and to identify unexpected adaptations and resources patients used to address disability after ARDS.
Sampling and Data Collection
We conducted semistructured interviews with patients in the Reevaluation of Systemic Early Neuromuscular Blockade (ROSE) trial.16 The ROSE trial was a multisite randomized trial examining use of a 48-hour early continuous infusion of cisatracurium with concurrent deep sedation versus usual care with lighter sedation and no routine neuromuscular blockade. The ROSE trial showed no differences in mortality or patient-centered outcomes. We approached all 79 English-speaking, surviving patients who were randomized between November 12, 2017, and April 5, 2018; consented to long-term survey follow-up; and completed either the 3- or 6-month survey. Patients were mailed a letter and contacted by telephone for recruitment. Respondents received $10. This study was approved by the Vanderbilt University Medical Center Institutional Review Board as the central institutional review board for this National Institutes of Health multicenter network.
K.H., a qualitative sociologist, conducted telephone interviews. Two other team members took notes. We drew on the National Health and Aging Trends Study model of disability and sense-making theory to develop the interview guide (for additional information and guide, see Supplement 1—available online only at ajcconline.org).17,18 Interviews were recorded and transcribed. We pilot tested the interview guide with a similar group of critically ill patients.19
We used open and directed approaches to identify patterns in how patients addressed disability and recovery following ARDS (Supplement 1, available online only).20,21 K.H. and C.S. independently open coded each transcript and then compared interpretations to refine codes. K.H., C.S., T.J.I., and C.L.H. discussed emerging patterns and refined the codebook and interview guide. K.H. and C.S. continued coding the remaining transcripts independently, discussing and resolving discrepancies. After consensus, coded transcripts were uploaded into the qualitative analysis software NVivo (QSR International). We identified no new codes in the last 12 interviews, suggesting data saturation.22 Code reports were created for review. Themes identified reflected key aspects of the National Health and Aging Trends Study disability model and Freedman’s conceptualization of rehabilitative and accommodative adaptation after critical illness.23,24
Seventy-nine patients from the ROSE trial were alive, eligible, and contacted for inclusion; 46 agreed to participate, 27 were not reached, and 6 declined. The mean interview length was 32 minutes (range, 13-57 minutes). Table 1 presents background characteristics of participants. Illness severity and demographics of interview participants were generally similar to those of the broader sample of eligible ROSE patients (Supplement 2, available online only).
Accommodative and Recuperative Strategies
For physical and cognitive difficulties, all patients reported using at least 1 accommodative or recuperative strategy. Accommodative strategies help patients work around new disabilities, and recuperative strategies focus on recovering previous ability.
The most common accommodative strategy was the use of assistive devices like canes, walkers, shower chairs, or other tools to navigate physical and mobility limitations (30 of 46 patients, 65%; Table 2). Patients also reported relying on family members to help with daily tasks (eg, cooking, bathing, or climbing stairs), transportation, or both (19 of 46 patients, 41%).
Female patient, age 44 years: I had my in-laws come to stay with my daughter and husband—my mother-in-law. She had been here the whole time I was in the hospital … so she was here [when I came home] to help with cooking and help with my daughter.
Many patients reported making changes to their living environments that involved navigating their homes differently (for example, using only 1 floor) or moving, most often to live with family members who could offer physical assistance (17 of 46 patients, 37%). Fifteen patients (33%) accommodated physical limitations by returning to work part time, changing jobs, or permanently leaving the workforce.
Female patient, age 47 years: I have a downstairs apartment [now], just 1 step in the door and I’m here. … It’s pretty good now. I got a walk-in shower. I have a bench seat in the shower. I’m good.
Interviewer: What was it like before?
Patient: Oh, it was terrible. Someone would have to get in the shower with me, get my left leg over the tub, and it was just misery. Taking the risk on falling, slipping, it was pure hell.
Patients reported accommodating cognitive issues by writing things down (8 of 46 patients, 17%) and relying on family members to provide information or to jog patients’ memories (6 patients, 13%). Two patients reported accommodations at work, including increased supervision.
Female patient, age 57 years: I remember some, but I don’t remember a lot. Sometimes when people tell me stuff—like do something later in the day—I forget it almost after they say it.
Interviewer: What do you do to help yourself remember things?
Patient: I write it down. That’s the only way I’m going to remember some stuff.
Recuperative strategies for physical issues were also commonly reported (Table 3). Most patients reported receiving some outpatient physical or occupational therapy (32 of 46 patients, 70%). Patients described outpatient therapies as being focused on recovery, although these services often include accommodative instruction. Additional efforts to improve endurance or strength were very common patient-initiated strategies for physical problems (19 of 46 patients reported some endurance-focused strategies: add daily tasks, 8 patients; exercises to build strength, 6 patients; walk increasing frequency or distance, 5 patients; continue breathing exercises, 5 patients).
Interviewer: Was there anything else that was difficult physically?
Male patient, age 63 years: Just endurance, trying to walk.
Interviewer: How did you tackle that?
Patient: I did it in the pool. I got a pool, so I went in the pool a lot … and just kept walking around the pool with the grandkids and stuff … it was less wear and tear on my body.
Patients sought to recover cognitive abilities by using puzzles, word searches, or video games to stimulate memory and cognitive skills (7 of 46 patients, 15%). Two patients described receiving outpatient therapy to address cognitive issues.
Interviewer: What sort of cognitive problems did you have?
Male patient, age 60 years: Working on basic problems, like working with my bank accounts, things like that. I made real silly errors there for a while. … Logic puzzles helped a lot—especially with the math. I’m able to do math in my head again.
Strategies for Emotional Problems
When we asked patients how they were dealing with the emotional problems they reported, no clear distinction between accommodative and recuperative strategies emerged. (See Table 4 for emotional strategies.) Common strategies to address emotional issues were talking to and receiving encouragement from family members (19 of 46 patients, 41%), focusing on the positive things in their lives (15 patients, 33%), and seeking out formal treatment through therapy or medications (15 patients, 33%).
Female patient, age 62 years: When I first got out of the hospital, everything was challenging. I cried at everything. I got upset very easily. It was like a whole different personality for about a month.
Interviewer: What did you do to deal with what was going on?
Patient: I have a super good therapist that I started seeing and they switched my meds around.
Prayer and support from their faith also helped patients address emotional issues (11 of 46 patients, 24%). For some respondents, being hospitalized was a distinct emotional challenge and they described coming home as providing emotional relief (11 of 46 patients, 24%).
Male patient, age 20 years: I have even more faith in God and what he’s doing.… I think that God is a real important part of my recovery … even though it sucked to be where I was—that’s where I was supposed to be, and I’m going to be okay.
Contextual Factors Influencing Adaptations
Contextual factors were related to strategy use. Social support was important in helping patients identify and facilitate strategies necessary for recovery. Patients’ family members helped them solve problems around disabilities, encouraged them throughout recovery, and sometimes coaxed patients toward formal services, especially around emotional difficulties.
Male patient, age 70 years: They got me a new dog. [My wife] said you need a dog just so you have to get up all the time.
Male patient, age 55 years: [My wife] was a very important advocate, both in terms of helping me keep track of medications and appointments and helping to keep me focused on recovery—keeping a positive outlook and helping me learn to live within my limitations.
Male patient, age 58 years: When I have anxiety, sometimes I talk to somebody— sometimes I pick up the phone and call friends.
Previous familiarity with the health system also facilitated identifying strategies. Patients reported relying on their own or family members’ professional clinical training (as therapists, nurses, etc) to navigate recovery. Patients also reported drawing on previous illness or injury experiences. Continuing exercises from physical therapy sessions after formal services ended was commonly reported (10 of 46 patients, 22%).
Male patient, age 60 years: I learned a long time ago how to do acupressure and all that stuff…from my chiropractor, I learned a lot of it—I had my neck surgery in 1987.… I got a lot of little pieces of paper saying do this—from my therapists, from my chiropractor.
Male patient, age 68 years: A really close friend of mine is an RN [registered nurse]. So when I came home, this friend of mine made sure that I had a walker, a bath chair— that I had everything that they wanted me to have. She did my MediSet [medication organizer]with all the medicines in it— she set all that up—I would not have been able to do that when I got home.
Persistent Problems Without Successful Adaptations
Some patients reported physical, emotional, and cognitive issues that they had not been able to adapt to or recover from; 31 of 46 patients (67%) reported at least 1 issue without a successful adaptation (ie, a persistent problem). Of the 46 patients, 28 (61%), 13 (28%), and 10 (22%) reported unremedied physical, emotional, and cognitive problems, respectively.
Female patient, age 62 years: The hard part is I just have no energy. I mean I go to PT [physical therapy] for an hour and a half and I come home and sleep for 3 hours, because I do not have the stamina and that’s what agitates me the most.
Male patient, age 49 years: My thought processes seemed to have changed, where before, I could string a sentence together fairly well … now I found myself stuttering, trying to find the right word to fit the sentence.… I’m 48 years old—I shouldn’t have that many problems with it, but right now, I feel like—what’s the word I’m looking for—it’s just hard.
When asked about addressing an ongoing problem, some patients reported they were unsure of whether services would help or felt that treatments were not working. Although two-thirds of patients reported participating in formal outpatient rehabilitation services, few sought additional therapy if disabilities or problems persisted after services ended. One patient reported doing physical therapy for a month and trying to continue exercises on her own but also voiced concern that she was still quite limited.
Female patient, age 51 years: [Physical therapy] did come to my home—right after, for 6 or 8 visits, and then they said I was fine. I feel like I’m kind of at a stalemate now, and I—it’s kind of depressing, like I’m not sure that I’m going to get much better than I am now. It’s hard to think of … but this may be as good as it gets.
Only 4 patients who reported persistent problems attempted no strategies to address the issue. Thus, strategies of unclear efficacy were more common than were failures to attempt any resolution. Persistent problems were noted across every demographic group and treatment randomization status (Supplement 3, available online only). Some strategies that patients reported may also be of limited effectiveness and potentially maladaptive. These strategies included avoiding thinking about their hospitalization (2 of 46 patients, 4%) and self-medicating (2 patients, 4%) as conscious strategies for emotional problems and using medical marijuana (2 patients, 4%) for physical problems.
Our study explored the strategies patients use to address disability after ARDS hospitalization. The prevalence of problems after ARDS in our study population was consistent with the published literature.1,25 All patients reported efforts to address physical, emotional, and/or cognitive issues following ARDS. Patient-driven strategies included novel ways of managing disability and increasing progress over time as well as extensions of skills learned in structured rehabilitative services accessed earlier in their recovery. Social support and previous familiarity with the health care system helped patients generate and use many of the strategies reported. However, many patients also reported persistent problems for which they had not identified an acceptable accommodation. For the great majority of persistent problems, patients reported having insufficient, rather than no, strategies.
We found that patients and their family members were actively involved in developing self-management strategies to correct or attenuate the impact of new problems, often with modest support from the health care system. For some patients, familiarity with health system resources because of previous illness or chronic conditions proved beneficial26 ; they drew on earlier experiences and knowledge in identifying strategies and accommodations. Yet whether or not survivors had access to formal health care system services, most exerted agency by actively working to fill the gaps.
This active exploration by survivors and their caregivers implies that neither clinical care nor trials should assume that just because a patient was not prescribed something, nothing is being done. In either clinical or research contexts, efforts to set goals27 and activate patients and family members28,29 may benefit from identifying patients’ current self-management approaches. Clinicians may have a role not only in prescribing new strategies but also in helping survivors select the most effective strategies and replace less effective or potentially harmful strategies. Ways to identify and selectively disseminate more effective adaptations, such as through moderated peer support, may help patients and family members learn about and implement useful adaptations.30
Throughout the interviews, the critical role of informal caregivers in the development of strategies was clear. This finding is consistent with the literature on the importance of social support.31 Yet after ARDS, those informal caregivers may have new, acute challenges. Cameron et al32 noted that most caregivers experience high levels of depressive symptoms, consistent with findings after sepsis (the most common cause of ARDS).33 Netzer34 and Sullivan et al35 found high levels of learned helplessness in family members of patients in the intensive care unit, which may limit family members’ effectiveness in the early post– intensive care unit period.34,35 This finding suggests that efforts to support families during and immediately after critical illness may indirectly benefit patients, and clinicians should consider supporting caregiver involvement in post–intensive care unit follow-up and recovery.
For clinicians seeking to improve patients’ ability to function physically, these interviews emphasized the particularly potent role of assistive devices23 but also their incomplete dissemination among patients. Patients’ access to assistive technologies may depend on the kinds of follow-up care they receive (rehabilitation therapy, pulmonary clinic, or primary care visits), which clinicians can support. These interviews also emphasized the evolution of disability and accommodative and recuperative strategies for months after ARDS, consistent with longitudinal cohort data.1,36 Whether patients might benefit from serial evaluations by physical and occupational therapists during recovery may warrant exploration. Many patients in our study reported ongoing efforts to engage in self-directed exercise without clinician supervision.
For clinicians seeking to improve patients’ cognitive and behavioral functioning, fewer clear adaptations were available. Patients emphasized the importance of being home. Early supported discharge by a skilled multidisciplinary team, which aims to offer patients earlier hospital discharge with coordinated rehabilitation in the patient’s home, is now commonplace among stroke patients with mild to moderate disability.37 For these patients, early supported discharge shortens the initial hospital stay and reduces long-term dependency and admission to institutional care; patients are also more likely to be independent in daily activities at 6 months.38 Some ARDS survivors described emotional and cognitive improvement upon returning home, and early supported discharge might provide similar benefits for ARDS survivors. However, the extent to which returning home improves mental and emotional function or is a marker of such improvement is unclear. These interviews also suggest that additional research is needed for identifying effective coping strategies.
Efforts to support families may indirectly benefit patients, and clinicians should consider supporting caregiver involvement in follow-up and recovery.
We note several limitations of our study. First, we interviewed patients; caregivers may have identified additional strategies. Given the significant role of social support that we identified, caregivers may have implemented strategies that patients were not aware of or did not report. Second, because we relied on patients’ reports of strategies used, we are not able to assess the actual use or frequency of these strategies. Third, we interviewed patients with sufficient social support to have been enrolled in a randomized clinical trial. Many of these patients had a legally appointed representative sign consent for that trial. These patients may have had higher levels of social support than did the 6% of patients who lacked an available surrogate when assessed for eligibility for the original trial.16 Fourth, because of the exploratory nature of this project, we were not able to determine the efficacy of particular strategies.
Patients in our cohort of 46 ARDS survivors, especially those supported by their families, engaged in a range of activities to attempt to address disability after ARDS. However, many patients had ongoing problems and had not developed effective strategies for adapting. Patients without social support may be at greater risk. Our work suggests that clinicians should consider implementing standard screening for impairments following ARDS and that future work is needed to analyze the effectiveness of patient-and family-generated strategies and accommodations and whether their dissemination to survivors would be beneficial.
We acknowledge all the investigators, coordinators, and staff members from the sites contributing to the Prevention and Early Treatment of Acute Lung Injury (PETAL) Network. We are thankful for the opportunity to share and receive feedback on this manuscript from the Multidisciplinary Intensive Care Research Workgroup and to Erin Ice for assisting with the manuscript’s descriptive statistics. Finally, we are very grateful for our interview participants’ time and candor.
This work was supported by grants U01 HL123031 and R01 HL132232 from the National Institutes of Health. This work does not represent the official position of the United States Government or the Department of Veterans Affairs.
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