Patient and Caregiver Experiences with a Telemedicine Intensive Care Unit Recovery Clinic

Abstract

Background:

Intensive Care Unit Recovery Clinics (ICU-RCs) were founded to address post-intensive care syndrome among ICU survivors. Telemedicine ICU-RCs may facilitate access for more ICU survivors, however, patient and caregiver experiences with telemedicine ICU-RCs have not been explored qualitatively.

Objective:

To explore patient and informal caregiver experiences with a telemedicine ICU-RC.

Methods:

Our qualitative exploratory cross-sectional study was guided by qualitative description methodology. Telemedicine ICU-RC visits were conducted at 3-and 12-weeks post-discharge following critical illness. Patients, and caregivers when available, met with an ICU pharmacist, ICU physician, and a neuropsychologist via Zoom. Thereafter, we conducted qualitative (1:1) telephone interviews with 14 patients and 12 caregivers recruited purposefully. Data were analyzed using conventional content analysis.

Results:

Five themes were identified: (1) general impressions of the intervention; (2) intervention organization and delivery; (3) intervention substance; (4) caregiver participation; and (5) ways to improve the intervention. Participants found the telemedicine delivery acceptable, convenient, time-saving, and conducive to thorough discussions. Participants appreciated the information, reassurance, and validation. Attention to mental health during the visits was strongly endorsed. Caregiver involvement depended on patient self-management and technical ability. Suggestions included scheduling a 1-week post-discharge visit, more follow-up visits, and individualizing content for in-depth discussions, including mental health evaluation.

Conclusions:

The study results enhance the understanding of patient and caregiver experiences with a telemedicine ICU-RC. Participants’ narratives helped to formulate recommendations to improve telemedicine ICU-RC delivery and content. Acceptability of this intervention indicates the potential for wider implementation of telemedicine ICU-RCs to reach more ICU survivors.

Introduction

Over five million Americans are admitted into an intensive care unit (ICU) annually.¹ The COVID-19 pandemic² and an aging population contribute to ICU admissions.³ Increased ICU admissions and improved survival rates have unveiled a public health concern – post-intensive care syndrome (PICS).⁴ PICS encompasses disrupted cognition, physical health,⁴ psychological well-being, employment, and finances.⁵ PICS may precipitate re-hospitalizations and other healthcare utilization.⁶ Few interventions to mitigate PICS have been studied and no conclusive evidence guides clinicians caring for ICU survivors.⁷

One intervention to address PICS is an ICU recovery clinic (ICU-RC). ICU-RCs aim to address critical illness physical, cognitive, and psychological sequelae.⁸ ICU-RCs originated in the United Kingdom,⁹ and have been implemented internationally,⁷-⁹ are often interprofessional, and vary in the timing and number of visits. Evaluation encompasses physical function (e.g., spirometry, 6-minute walk test); cognition; medication reconciliation; and psychological wellbeing.^10,11 Some ICU-RCs include case management, social work, spiritual counseling, peer support, or end-of-life care.¹¹ Potential benefits of ICU-RCs include reduced mortality,¹² decreased 30- and 60-day readmissions,¹² longer time to readmission,⁷ improved physical function, prevention of post-traumatic stress disorder, and mitigation of ICU clinician burnout.¹³,¹⁴ ICU survivors appreciate reassurance, information about physical and psychological recovery, and ICU debriefing during ICU-RC visits.¹⁵

In-person ICU-RC attendance is challenged by patients’ functional impairment, transportation challenges, travel distance, and caregiver time constraints.^16,17 Offering ICU-RC via telemedicine may promote care access, patient-provider collaboration, and timely intervention at a lower cost by targeting these barriers.¹⁸ Telemedicine encompasses videoconferencing or telephone visits, instructional videos, home sensors, and text messaging.¹⁹ Potential telemedicine disadvantages include privacy breach, impersonal communication, miscommunication, and asynchronous responses.²⁰

Qualitative exploration of patient and caregiver experiences with a telemedicine ICU-RC is needed to inform development of telemedicine ICU-RCs.²¹ The aim of this study was to explore patient and caregiver experiences with a telemedicine ICU-RC.

Methods

Study Design and Setting

We used a cross-sectional, exploratory design with qualitative description methodology.²² This study is embedded in an ongoing randomized controlled trial at one tertiary academic medical center in the southeastern United States (NCT03926533). The purpose of this trial is investigating the feasibility and efficacy of a telemedicine ICU-RC versus control condition dictated by the discharge team (i.e., no ICU-RC per standard). The telemedicine ICU-RC mirrors an in-person ICU-RC. This ICU-RC, established in 2012, receives referrals for severe critical illness survivors (e.g., mechanical ventilation, sepsis, delirium). The interprofessional team (i.e., ICU physician, psychologist, pharmacist) evaluates and manages PICS. Only telemedicine ICU-RC trial participants were recruited for this qualitative study. Institutional Review Board approval was obtained (#190790).

Sample

Purposeful sampling without pre-determined sample size was used, with recruitment until data saturation. Patients who agreed to complete the interview were asked whether they have an unpaid caregiver. If so, caregiver consent was pursued. Patient inclusion criteria were: (1) >=18 years and English-speaking; (2) without visual, hearing, or cognitive impairments precluding participation; (3) ICU stay with sepsis and/or acute respiratory distress syndrome diagnosis; (4) electronic device with internet connection; (5) basic computer skills (e.g., checks email); and (6) completed at least one telemedicine ICU-RC visit. We included patients with sepsis and/or acute respiratory distress syndrome because they are at high risk for PICS.²³ Caregiver inclusion criteria were: (1) >=18 years and English-speaking; (2) providing unpaid patient care; and (3) willing to comment on the telemedicine ICU-RC visit(s).

Intervention

The intervention included two interprofessional videoconferences at 3- and 12-weeks post hospital discharge or upon return-to-home if discharged to another facility. This timing is the study site’s standard for in-person ICU-RC visits, based on the best available evidence for ICU recovery and intervention timing.^10,24 Patients logged into Zoom via a secure patient portal from any device (e.g., computer, mobile telephone). Study staff provided login instructions and were available during the visits. Patients were asked to prepare a medication list for pharmacist review in advance. Caregivers participated if desired by the patient. Patients met with a pharmacist, ICU physician, and neuropsychologist who may or may not have treated the patient in the ICU. These providers are internationally recognized for their PICS expertise and have worked together since this ICU-RC was established in 2012, providing occasional telemedicine care since 2018. They did not receive specific telemedicine training except the technical videoconference visit training.

Visit content included, but was not limited to, medication reconciliation and counseling, medical exam, ICU debrief, and cognitive (e.g., Montreal Cognitive Assessment-Blind)²⁵ and mental health (e.g., Impact of Events Scale)²⁶ screening. At the 12-week visit, clinicians reviewed the topics discussed during the first visit (Supplemental Figure 1). Both visits were structured using evidence-based patient-centered communication methods (e.g., participatory communication with patients actively encouraged to voice concerns and ask questions).^27,29

From December 2019 through March 2020, visits were conducted from a hospital outpatient exam room: clinicians entered the room sequentially. Beginning April 2020, due to the COVID-19 pandemic, clinicians simultaneously joined the videoconference remotely. A joint discussion resulted (e.g., pharmacist reviewing medications with physician’s input).

Recruitment and Data Collection Procedures

Recruitment proceeded between December 2019 and March 2021. Patient informed consent for the trial, signed via electronic Research Electronic Data Capture³⁰ form, included participation in this qualitative study. Caregivers consented verbally.

When the first visit ended, the Principal Investigator (PI, first author), a post-doctoral nursing fellow, introduced herself, explained the qualitative study purpose to participants, and asked about interview participation. If patients declined interview, caregivers were contacted directly. Dyads were not required for the study, thus unpaired patients and caregivers were included. All participants received $25 gift cards.

Sociodemographic and clinical patient data were obtained during the trial enrollment. Caregivers completed a sociodemographic survey. Semi-structured individual interviews were conducted via telephone (questions listed in Table 1). Caregivers could be present with patients but did not participate in the patient’s interview. Interviews were audio-recorded, professionally transcribed, proofread, and de-identified. The PI wrote reflexive statements and analytic memos following interviews. The senior author, an experienced qualitative critical care nurse researcher, mentored the PI and led two initial interviews. These interviews substituted pilot testing, prompting revisions of the questions. The first interview was under 12 minutes. Thus, the questions were edited to attain more data-rich interviews. No repeat interviews were conducted. Transcripts were not returned to participants.

Table 1.

Interview guide

Questions for patients

1) Please tell me with as much detail as possible about your participation in this program.

2) Please tell me about the logistics of the visits, starting from logging into Zoom.

3) Please tell me about the preparation before the visits, how did you find the reminders and the instructions about the visit(s)?

4) What was your experience with using the technology during the visit(s)?

5) How was the wait time before the visit(s)?

6) Please tell me about your interaction with: a) pharmacist; b) physician; c) neuropsychologist.

7) Were you surprised by the attention to mental health during the telehealth visit(s)? Was it in any way uncomfortable? Why?

8) What was the most difficult part about the visit(s)? Why?

9) What was the easiest part about the visit(s)? Why?

10) Have you ever used telehealth or videoconferencing before? If so, for what purpose (e.g., other telehealth visits, personal or professional use)?

11) If you had a choice to do these visits via telehealth or go into an in-person doctor’s clinic, which would you prefer?

12) Does anything stand out to you from your visit(s)? Was anything unexpected or surprising to you?

13) What went particularly well during your visit(s)?

14) What did not go well during the visit(s)?

15) Please tell me what would you change about this program? Why would you change it?

16) Please tell me briefly about the cause of your ICU hospitalization.

17) What would you suggest your hospital could have done differently following your ICU discharge that you believe would have been helpful?

18) In your opinion, what could have the healthcare system overall done differently (including primary care, other healthcare professionals) to help you following your ICU stay?

19) How far away from the medical center do you live (i.e., how long would it take you to drive if the visit(s) were in-person?)

20) What, if any, lingering unanswered questions did you have after the visit(s?)

21) What were your expectations about these telehealth visit(s)?

Questions for caregivers

1) Please tell me with as much detail as possible about your person’s participation in this telehealth program.

2) As a caregiver, please describe to me what was your experience with this program?

3) What was your involvement as your person was participating in this program?

4) What, if anything, did you find beneficial in this intervention? What worked well?

5) What, if anything, was not helpful in this intervention?

6) Can you please tell me about your person’s interaction with: a) pharmacist; b) physician; c) neuropsychologist.

7) Did you help your person with telehealth visit(s)? If so, how?

8) What do you wish this program provided to you and your person that it did not provide?

9) What was the cause of your person’s ICU hospitalization?

10) What could the healthcare system overall do differently to better help ICU survivors and their caregivers?

11) If the caregiver was not present with the patient during the telehealth visit(s): do you wish you were invited to be present during the visit(s)? Would you want to be included as a participant in those visit(s)?

12) (If the caregiver was present during the visit): If you had a choice to do these visits via telehealth or go into an in-person doctor’s clinic, which would you prefer?

Note. Questions and probes were modified and added for individual interviews based on participants’ narratives. ICU – intensive care unit.

Data Analysis

Conventional content analysis³¹ was used. Initially, the PI and the second author independently reviewed the transcripts. The PI coded four transcripts inductively. For each participant, a table was generated with codes and corresponding quotations, which were reviewed for patterns using constant comparison.³² Two authors reconciled the codes for the first 13 interviews. The PI analyzed the remaining 13 interviews. The codebook was updated as new ideas were discovered. All interviews were re-checked with the final codebook. Inter-rater reliability was not calculated. Clusters of codes were used to formulate categories and themes. Data saturation was attained at 26 interviews. Atypical cases were examined.³² The findings were not discussed with the participants. The Consolidated Criteria for Reporting Qualitative research checklist was used for planning and reporting.³³

Rigor

We followed Lincoln and Guba (1985) trustworthiness criteria.³⁴ Credibility was enhanced with detailed analyses, attending to atypical cases. Transferability was attained by a clear description of the sample, data collection, and analysis. Confirmability was achieved with two independent coders analyzing half of the transcripts. Reflexivity was demonstrated by the PI writing reflexive statements and analytic memos after the interviews to acknowledge bias and adjust subsequent interviews.

Results

During recruitment period, 19 patients had at least one visit (average attendance 1.2 patients/month). Fourteen patients (mean age 49.4, range 24-75, eight women) and 12 caregivers (mean age 51.4, range 24-77, nine women) completed this study. For two caregivers, the patients declined participation without explanation. Four patients had no caregiver. Twenty-two participants were interviewed after the 12-week visit. Mean visit length was 56 minutes and 36 minutes for the 3- and 12-week visit, respectively. Mean interview length was 26 minutes for patients (range 10-39 minutes) and 25 minutes for caregivers (range 12-39 minutes). Five themes were identified: (1) general impressions of the intervention; (2) intervention organization and delivery; (3) intervention substance; (4) caregivers’ participation; and (5) ways to improve the intervention. Participant characteristics are summarized in Tables 2 and 3.

Table 2.

Patients’ Sociodemographic and Clinical Characteristics (N = 14)

Characteristic	N (%)	Median [IQR]
Gender (women)	8 (57)
Race
Black	1 (7.1)
Latino/a	1 (7.1)
White	12 (85.7)
Education
High School	3 (21.4)
Associate’s degree	3 (21.4)
Bachelor’s degree	4 (28.6)
Master’s degree	2 (14.3)
Doctoral/professional post-graduate degree	2 (14.3)
Employment before ICU admission
Employed full-time	5 (35.7)
Employed part-time	5 (35.7)
Not employed	2 (14.3)
Receiving disability benefits	1 (7.1)
Retired	1 (7.1)
Admitting diagnosis
Acute respiratory distress syndrome	1 (7.1)
Sepsis	11 (78.6)
Acute respiratory distress syndrome and sepsis	2 (14.3)
APACHE II score1		24.5 [12.8-30]
ADL2 score
0 (no functional limitations)	9 (64.3)
1-6 (some functional limitations)	3 (21.4)
7-12 (severe functional limitations)	2 (14.3)

Note. IQR – interquartile range. APACHE II – Acute Physiology and Chronic Health Evaluation II.

¹During the index ICU admission.

²ADL – activities of daily living. The questions assessed the patient’s ability to complete activities of daily living. Score range: 0-12.

Table 3.

Caregivers’ Sociodemographic Characteristics (N = 12)

Characteristic	N (%)
Gender (female)	9 (75)
Race
Black	1 (8.3)
Latino/a	1 (8.3)
White	10 (83.3)
Employed outside of home (yes)	8 (66.7)
Relationship to the patient
Spouse/fiancée/significant other
Parent
Education
General Education	1 (8.3)
Development diploma
High School	2 (16.7)
Associate’s degree	3 (25)
Bachelor’s degree	3 (25)
Master’s degree	3 (25)
Lives with the patient in the same house	12 (100)
Receives help in caring for the patient	6 (50)

Theme 1: General Impressions of the Intervention

Participants described their impressions from the participation in this intervention, including what they liked or disliked, delivery, and communication with each ICU-RC clinician. All participants found the intervention acceptable. While most impressions were very positive or neutral, nine patients and eight caregivers offered criticisms. Three individuals criticized the content or delivery. Two participants disliked the content. Specifically, patient-045 criticized non-private cognitive assessment conducted by the neuropsychologist, with the pharmacist and physician present on the videoconference. Two patients objected to vaccine counseling.

Two other participants preferred in-person format. Patient-024 represented an atypical case described later. Caregiver-023 indicated “personal preference” for in-person visits but admitted that “telehealth is the next best thing … with the COVID situation.” Others preferred telemedicine: “telehealth, unless it’s real serious they got to see them” (caregiver-046). Participants received no option for in-person ICU-RC. Thus, they made hypothetical comparisons, referring to previous in-person healthcare visits outside this intervention.

Personnel

Impressions of interactions with ICU-RC clinicians varied. Although communication with the pharmacist was the least mentioned, participants reported thorough medication reconciliation and explanations, “If I had a question about what it was … she did explain to me which pills were blood pressure pills, which pills were the blood thinner pills,” (caregiver-026). Participants commended the physician, with Zoom screensharing affording an unexpected advantage, “She sounds really smart, she’s the one that showed me the x-ray and pointed stuff out and told me about the blood clots and that I really needed to check on them,” (patient-008). Impressions of the communication with the neuropsychologist were the most varied. Several participants strongly endorsed the mental health component – not addressed routinely post-discharge. Others, however, felt uncomfortable when the neuropsychologist inquired about depression or recommended a support group, “He thought I was depressed, because I had just gotten a divorce and I was taking Zoloft, but I wasn’t depressed … I act crazy sometimes, but I’m not crazy, made sure he got that point across,” (patient-008).

Theme 2: Intervention Delivery and Organization

Participants commented on the logistics of the visits and technology usability. They also described practical and unexpected experiential advantages of telemedicine. Most participants found that using the technology was “easy” (patient-014, -005) and “all the connection was good” (patient-034), despite some lacking videoconferencing experience. Participants appreciated pre-visit reminders (email, text message), but illustrated instructions for accessing Zoom were unnecessary, “I didn’t use the instructions … too much information, for me, is not helpful,” (patient-045). Participants commended the convenience of participation from home, describing saved driving time and not needing to find parking, arrange for infant care, or plan travel for a paraplegic person, “There but just a very short time, then I’m back three hours on the road again. I don’t have serious problems going on, then I would rather do over the phone,” (patient-008). Telemedicine suited debilitated patients, “It works better for him to do telehealth visits … he was on oxygen and it was hard for him to take his stuff with him and actually go to a doctor’s appointment,” (caregiver-026).

Visits were described as more thorough and focused compared to in-person visits: “I felt like I almost talked to them more than I would have if I had an appointment … I could just relax and let my thoughts flow,” (patient-014). The pandemic-induced shift to the three clinicians simultaneously present during the videoconference was convenient: “Everyone at once being able to hear me and my story instead of repeating myself multiple times,” (patient-044).

Theme 3: Intervention Substance

Many narratives concerned intervention substance – not remote delivery. Participants focused on the attention to mental health, comprehensiveness of the discussions, and reassurance they received.

Mental Health

Participants were encouraged by meeting with the neuropsychologist who validated their concerns about post-ICU cognitive and mood disturbances. Several patients were surprised by the attention to mental health but acknowledged they would not have volunteered such concerns without the neuropsychologist’s initiative. Patient-034 contrasted the neuropsychologist’s advice with his relatives’ apprehensions:

“Most people tell me I can’t do. ‘You can’t do this, you can’t do that.’ … He told me that I needed to get out more and try things instead of just sitting at the house and saying that I can’t do”

Caregivers acknowledged their stress and valued meeting with the neuropsychologist. Caregiver-034 admitted being depressed because of the dramatic change from her husband’s illness, “Is this how it’s going to be from now on? … Trying to figure out what am I going to do and how is this going to look … He’s not an old man.” This caregiver expressed relief after the neuropsychologist gave her “actionable plans” (consultation with a neurologist, joining a support group). This caregiver admitted that no one else had advised her regarding her husband’s flat affect and asthenia post-discharge.

Comprehensiveness

Participants described this intervention as thoroughly covering all topics related to health and post-ICU recovery, “They probably spent more time with me than they wanted to or needed to,” (patient-008). Participants described having no lingering questions: “everything was covered,” (patient-036), “everything was answered what we asked,” (caregiver-026).

Reassurance

The need for information contrasted with the need for reassurance and validation from the team. Two participants having repeat ICU hospitalizations confirmed not learning anything, “Everything she [the physician] told me, I already knew,” (patient-046). Nevertheless, participants appreciated clinicians’ attention. A commonly mentioned visit characteristic was the team normalizing recovery and progress. These clinicians individualized advice: “They also encouraged me to work at my own pace, not to feel like I had to push myself way beyond my limits,” (patient-014). Reassurance was intertwined with the attention to mental health. For example, caregiver-027 did not attend the visit, but he shared his son’s conversation post-visit, “He was surprised and pleased at confirmation of some of his feelings that he had had after the ICU stay … to know that he was not alone in feeling some of those feelings.”

Theme 4: Caregivers’ Participation

Caregivers commented on their role in this intervention, encouraging the patient to participate, assisting with technology, or communicating with the team. Caregivers also noted their own benefits from the visits.

Caregiver participation ranged from absence to active discussion with the clinicians, with caregivers talking as much or more than patients. Caregivers discussed their involvement related to the patient’s knowledge of and ability to manage their health. Several spouses spoke with the pharmacist during medication reconciliation, “He couldn’t have told you what he took at night or in the morning. I pretty much deal with all the medicine,” (caregiver-026). Some caregivers installed the technology. Caregiver-042 installed Zoom but gave the patient autonomy during the visit:

“I don’t want her to feel like she’s being talked over or around. I want her to feel like it’s her appointment and she can say and ask whatever she needs, but then I’m still here if she needs me.”

Few caregivers admitted that, if not for their initiative or help, the patient would not have participated, “If he had to set it up, he would have been too frustrated … ‘Nope, not me,” (caregiver-026). Caregivers also noted advantages of the telemedicine format, “I’m the designated driver … it’s a lot easier because it’s difficult for him to get in and out of the seat to drive,” (caregiver-005). Caregiver-018 emphasized how the ICU-RC clinicians supported her during her fiancé’s illness, “At no point in time, have we felt alone … The team has been very helpful … not just been a walk in, walk out.”

Theme 5: Ways to Improve the Intervention

Despite a predominantly positive experience with the intervention, participants offered numerous suggestions for improvement. Participants discussed choice of device for videoconferences, logistics of which clinicians are on videoconference at what time, and clarification of clinicians’ roles. Likewise, participants recommended ways to improve clinician communication with participants and intervention timing, frequency, and focus.

Organization

Several individuals participated via smartphone, but some found it cumbersome with multiple persons on the screen simultaneously, “Telehealth should be more on computers, not the phone. A computer, a laptop, or tablet – but a phone is not good for it … There were too many people coming in at once,” (caregiver-046).

Participants communicated uncertainty regarding clinicians’ role. The biggest confusion originated around the neuropsychologist: participants referred to him as a psychiatrist, a counselor, or a doctor. Patient-045 felt embarrassed when the neuropsychologist asked him to count backwards from 100 by sevens with the physician and pharmacist watching him struggle, “What’s wrong with me? Why is my brain not picking up how to do that any better? … It was embarrassing in front of everybody that I was struggling with that so bad.”

Timing, Frequency, and Focus

A prominent recommendation was to increase visit frequency and schedule the first visit sooner (e.g., one-week post-discharge). No participants advised having fewer visits, rather they wanted reassurance that everything was progressing well, “More [visits] would be better … When people check up on her, she feels better about her healthcare because she feels like someone’s listening and taking care of it,” (caregiver-042). Similarly, caregiver-023 endorsed getting PICS information both from her husband’s permanent physicians and this ICU-RC team, “overcommunication is the best way to go.” Patients proposed matching visit schedules to individual recovery trajectories. For example, patient-034 emphasized scheduling more meetings with the neuropsychologist because cognition and mood were his main concerns.

Personnel

Caregiver-034 reported disappointment with the pharmacist and physician, who could not answer why her husband continued having bothersome physical symptoms. Two patients were disconcerted by vaccine counseling – a standard for ICU-RC visits. One patient’s comments suggested power imbalance between the patient and ICU-RC clinicians: “They went overboard, trying to talk me into the flu vaccination … like it was an agenda,” (patient-046).

Atypical Case

Patient-024 strongly preferred in-person rather than telemedicine delivery. His concerns were about the inability to conduct a physical exam remotely:

“I would prefer going to the clinic because you obviously are limited with the physical exam … Sometimes things are found which are unexpected … it doesn’t happen often … But, when it happens, it’s extremely important,” (patient-024).

Discussion

In this study we explored patient and caregiver experiences with a telemedicine ICU-RC. Participants deemed telemedicine ICU-RC acceptable, timesaving, and comprehensive. Participants emphasized the significance of reassurance and attention to mental health, and noted the clinicians’ strengths (e.g., thoroughness, attention to mental health) and weaknesses (e.g., non-private cognitive assessment). They also described the advantages and shortcomings of technology. Caregivers often facilitated ICU-RC participation. Suggestions for enhancing this intervention, including technology (e.g., computer vs. telephone), organization (e.g., clarify providers’ roles), content (e.g., customize visits to patient-specific needs), and frequency (e.g., early and more often) can be used to increase this intervention’s acceptability. Few objections to telemedicine delivery (e.g., feeling power imbalance with multiple clinicians on screen) and organization (e.g., need for private neuropsychological evaluation) require consideration.

Favorable general participant impressions provide promise for expanding availability and reach of ICU-RCs. Timesaving, convenience, and intervention substance align with previous reports of convenience and key components of successful ICU recovery programs (i.e., care continuity, symptom management, normalization and management of expectations, progress validation, decreased feelings of helplessness and guilt).^35-36 Care continuity and symptom management were evident when referrals and plans (e.g., join a support group) were provided. ICU-RC personnel and processes provided normalization, management of expectations, and progress validation, reducing participant feelings of helplessness and guilt, apparent when participants noted feeling supported, not alone, and with all questions answered. This intervention modality extended care delivery to debilitated/disabled patients (e.g., paraplegia, ongoing physical weakness); saved time for those with competing responsibilities (e.g., work, children, caregivers); and enhanced the patient experience by promoting comprehensive discussion with the interprofessional team.³⁷ These strengths of the ICU-RC suggest its potential usefulness for a wide range of patients with various life circumstances.

Our findings of telemedicine visits being less rushed and more thorough compared to in-person visits are novel. Potentially, the simultaneous presence of all clinicians, only possible with telemedicine, facilitated the perception of a more deliberate, detailed ICU-RC visit. Simultaneous presence of all clinicians during an in-person ICU-RC visit may be overwhelming or frightening for the patient and unfeasible with limited clinic space and scheduling. Additionally, some patients prefer in-person visits, as identified in our atypical case. One solution to maintain the convenient and perceived thorough, unhurried nature of telemedicine visits could be a combination of telemedicine and in-person ICU-RC. Telemedicine visits may be used for the care that can be implemented efficiently remotely (e.g., medication reconciliation, normalization and validation of experience, expectation management, and neuropsychotherapy). Additionally, telemedicine visits may encompass triaging urgent post-discharge needs, including ordering durable medical equipment and disability referrals. Telemedicine visits may then be supplemented with in-person visits for thorough and timely physical assessment.

Our inclusion of caregivers to evaluate their experience with telemedicine ICU-RC is also novel. Caregivers noted convenience of telemedicine modality and discussed their role in assisting with technology. Caregivers benefitted from interacting with ICU-RC clinicians for practical and emotional support, which aligns with prior research describing caregiver needs for assistance.³⁸ Caregiver burden and financial concerns frequently affect ICU survivor families.³⁹ Thus, besides including caregivers in ICU-RC visits, clinicians may integrate caregiver mental health and healthcare navigation challenges to address both patient and caregiver needs and support optimal ICU recovery.⁴⁰

Implications for Telemedicine ICU-RC Delivery

Participant suggestions provide implementable strategies for improving telemedicine ICU-RC delivery. Patients can be alerted to use a tablet or a computer rather than a smartphone for a better view of multiple individuals on the screen. ICU-RC clinicians should also clearly introduce themselves and their specialty, possibly adding it to their name “tag” on the videoconference platform. Privacy for the neurocognitive assessment is essential. It can be achieved by separate scheduling of the neuropsychologist visit, creating a breakout room, or other providers leaving during this meeting. A structured and early triage assessment of patient needs within 1-2 weeks post-discharge may be used to tailor intervention timing, frequency, and focus, matching participants’ needs. Lastly, information on PICS and structure of ICU-RC visits can be provided in advance, so patients understand the standard components (e.g., mental health assessment, vaccine counseling).

Limitations

This study has limitations. The sample comprised younger adults (mean age 49). Most had no limitations in activities of daily living, implying their familiarity with technology compared to older patients or those with difficulties accessing technology due to functional impairments. Most participants were female, limiting representation of men’s perspectives. Social desirability bias may have caused participants to conceal a negative or neutral experience with this intervention. Those who declined participation may have had worse experiences. Telephone interviews prevented assessment of non-verbal cues.⁴¹ The interview questions were not pilot tested and inter-rater reliability between the two coders was not calculated, decreasing dependability. Patients with a higher illness severity may have declined participation or died before the intervention. We did not collect data on participants who were eligible but declined participation. Our sample was from one geographic area, highly educated, and predominantly white. We excluded individuals lacking internet connectivity, computer or a mobile device, technical skills, or caregivers, limiting the transferability of our findings. Finally, participants did not compare an in-person ICU-RC with a telemedicine analogue, instead, making hypothetical comparisons based on their past in-person healthcare encounters.

Conclusion

Our findings support the acceptability of a telemedicine ICU-RC intervention, while illuminating areas for improvement. Future research must quantify the feasibility of telemedicine ICU-RCs and focus on the impact of telemedicine ICU-RCs on long-term outcomes (e.g., functional status, quality of life, healthcare utilization, caregiver burden) across multiple settings and populations. Understanding of participant experiences and outcomes following telemedicine ICU-RCs may inform strategies to mitigate PICS.