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Abstract

Advances in sedation management and early rehabilitation have enabled intensive care unit (ICU) patients to recall and form their own care experiences. However, existing patient-reported experience measures often draw from general inpatient populations, lacking specificity to the ICU context. This study aimed to explore the key elements, in order to help shape the framework of ICU patients’ experience. A descriptive qualitative study was conducted with 18 patients from 4 ICUs at Fudan University Zhongshan Hospital, China. Semistructured interviews were carried out within 1 week of ICU discharge between January and February 2024. Data were analyzed using thematic analysis following the COREQ checklist. The analysis identified 5 functional domains encompassing 8 themes: organizational (Rapid Response, ICU-managed Transfer), informational (Information Provision), relational (Caring Respect), clinical (Professionalism in Healthcare), and logistical (ICU Environment, Physical Comfort, Family Visitation). These domains and themes were derived from participants’ narratives, revealing how ICU patients perceived and made sense of their care experiences. The study provides a patient-centered perspective on critical care experience, contributing to the conceptual framework of ICU patient experience. Findings underscore the importance of addressing both clinical and nonclinical aspects of care. Further research is needed to translate these experiential elements into a structured patient-reported experience measure tailored for ICU populations, ultimately supporting more responsive and compassionate critical care practices.

Keywords

patient experience qualitative methods quality improvement patient/relationship-centered

Introduction

In 1986, the Picker Institute introduced a core principle of patient-centered care, evolving from the concept of shared decision-making (SDM).¹ Since then, patient experience has increasingly been recognized as 1 of the 3 pillars of healthcare quality, alongside clinical effectiveness and patient safety.² Historically, investigating experiences in critical care was challenging due to patients’ unconsciousness and unreliable memories.^3–5 However, over the past 2 decades, a shift toward lighter sedation has enabled more patients to remain partially or fully conscious during their intensive care unit (ICU) stay.^6–8 As a result, many patients now retain coherent memories of their treatment, environment, and interactions with staff, allowing for more accurate exploration of their critical care experiences. Recent studies have examined various aspects of these experiences, including the ICU environment, intrahospital transport, and care related to mechanical ventilation.^9–12 Although elements of critical care differ from those in general inpatient experience frameworks,¹³ a Nordic metasynthesis has identified 4 key themes: the body, the mind, interpersonal relationships, and the ICU environment.¹⁴

ICUs are designed to provide continuous monitoring and specialized treatment for critically ill patients. Although advancements in technology and workflow have improved professional care and survival rates,¹⁵ the ICU experience remains highly stressful for both patients and their families.⁹ Patients present with diverse conditions, receive different treatments, and exhibit varied emotional responses. In mainland China, approximately 2 million patients are admitted to ICUs annually via outpatient and emergency services,¹⁶ while around 1 million are discharged each year.¹⁷ These large patient volumes place additional strain on already high-pressure environments for both healthcare providers and patients.

Qualitative research on ICU patient experience in China remains limited. Understanding these experiences is essential for advancing critical care frameworks. This study aims to explore ICU patients’ perspectives in depth, contributing to the development of patient experience models and supporting the design of patient-reported experience measures for clinical use.

Methods

This descriptive qualitative study employed thematic analysis and followed the COREQ guidelines (see Supplemental Material S1). Ethical approval was obtained from the Ethics Committee of Zhongshan Hospital, Fudan University (B2024-422).

Participants Selection

Purposive sampling was used to ensure balanced representation across gender, age, diagnosis, education, and financial status. Eighteen patients were recruited from 4 ICUs at Zhongshan Hospital, Fudan University in Shanghai (see Appendix A for definitions of SICU, CICU, LICU, and RICU). Patients were eligible if they (1) had been hospitalized in the ICU for more than 24 h, and (2) had at least one period with a RASS score of 0 during their stay. To ensure reliable recollections, all interviews were conducted 3 to 5 days after transfer to a general ward, when patients were fully awake and clinically stable. All participants were informed about the study, provided written consent, and were assured of voluntary participation and the right to withdraw at any time.

Personal Characteristics

Interviews were conducted by 2 female researchers: a nursing postgraduate with formal qualitative research training, and a nursing doctoral student and data analyst with 7 years of experience, including prior training in qualitative interviewing.

Data Collection

Before conducting formal interviews, we pilot-tested the interview questions with 3 ICU patients and 2 intensive care professionals to ensure clarity and relevance. Feedback from the pilot participants led to refinements, including rewording questions for better comprehension and incorporating new perspectives. The final version of the interview guide, presented in Appendix B, was used in the main study. Additional interviews were conducted as needed for clarification. All interviews were conducted in person, lasting between 18 and 92 min. Data collection continued until thematic saturation was reached. All interviews were digitally recorded, anonymized, and transcribed verbatim. Participants confirmed that the transcripts accurately reflected their experiences.

Data Analysis

Data were analyzed using thematic analysis as outlined by Braun and Clarke. Verbatim transcripts were imported into NVivo 12 (QSR International) for coding and to explore patients’ ICU experiences and how these were shaped by ICU services. Initial coding was conducted independently by researchers. An audit trail was maintained throughout to ensure traceability from the original data. To enhance trustworthiness, the summary of themes was reviewed by a supervising professor with expertise in ICU management.

Results

Participant Characteristics

Participants had a mean age of 58.4 years (range: 19-82), with ICU stays ranging from 1 to 14 days. Table 1 presents the characteristics of the participants, including their disease types. All interviews were conducted within 7 days of ICU discharge. Admission reasons varied and included elective postoperative care and pneumonia. All participants were Chinese and were able to articulate their ICU experiences independently.

Table 1.

The Characteristics of Participants in this Study.

ID	ICU category	Gender	Age	ICU length of stay	Diagnosis
1	LICU	Male	63	1	Gastrointestinal diseases
2	SICU	Female	36	1	Gastrointestinal diseases
3	LICU	Female	66	2	Gastrointestinal diseases
4	SICU	Male	60	6	Gastrointestinal diseases
5	SICU	Male	82	1	Cardiovascular diseases
6	SICU	Male	64	1	Cardiovascular diseases
7	SICU	Male	53	1	Cardiovascular diseases
8	SICU	Male	72	2	Cardiovascular diseases
9	SICU	Male	63	3	Cardiovascular diseases
10	CICU	Male	75	3	Cardiovascular diseases
11	SICU	Female	55	1	Respiratory diseases
12	SICU	Male	61	2	Respiratory diseases
13	SICU	Female	27	3	Respiratory diseases
14	RICU	Male	72	6	Respiratory diseases
15	RICU	Male	19	14	Respiratory diseases
16	SICU	Male	42	2	Endocrine diseases
17	SICU	Female	66	2	Reproductive system diseases
18	SICU	Male	76	11	Musculoskeletal system

Note. SICU, surgical intensive care unit; RICU, respiratory intensive care unit; LICU, liver intensive care unit; CICU, cardiovascular intensive care unit.

Quantitative Findings

Figure 1 summarizes the number and proportion of positive, neutral, and negative responses for each theme. It is important to note that not all patients shared experiences related to every theme, resulting in varying total numbers of responses per theme. For example, “Professionalism in Healthcare” received the highest proportion of positive responses (57.1%), indicating a generally favorable perception of staff professionalism. In contrast, themes such as “Physical Comfort” and “Information Provision” had high proportions of negative responses (85.7% and 69.2%, respectively), suggesting that these areas may require targeted improvements. Some themes, including “ICU-managed Transfer” and “Family Visitation,” received no positive responses and were predominantly associated with negative experiences, which may reflect systemic limitations or unmet expectations in these aspects of care. Detailed breakdown of response types by theme are shown in Appendix C.

Figure 1.

Distribution of responses by theme.

Qualitative Findings

Participants’ recollections of critical care in ICUs revealed both similarities and differences, largely shaped by interactions with different staff members. A coding tree was developed to organize the emerging themes by functional domains: organizational (Rapid Response, ICU-managed Transfer), informational (Information Provision), relational (Caring Respect), clinical (Professionalism in Healthcare), and logistical (ICU Environment, Physical Comfort, Family Visitation). Each theme comprised subcategories derived from participants’ narratives. A summary of the coding structure is shown in Table 2.

Table 2.

A Summary of Coding Structure.

Functional domain	Theme	Example codes
Organizational	Rapid response	Lack of night staff; urgent needs unmet; handover delays
	ICU-managed transfer	Long waits; uncomfortable transfer; lack of coordination
Informational	Information provision	Unclear tube removal timing; vague rehab guidance; insufficient care explanations
Relational	Caring respect	Staff attitudes; communication challenges; emotional reassurance
Clinical	Professionalism in care	Bleeding incidents; coordinated teamwork impressions
Logistical	ICU environment	Noise/light issues; broken call bells; visitation phone volume
	Physical comfort	Pain; reliance on staff for personal care
	Family visitation	Restricted contact; desire for video calls

Note. ICU, intensive care unit.

Organizational Domain

Theme 1: Rapid Response

Participants emphasized the urgency of addressing immediate physical discomforts, such as phlegm buildup, which were perceived as more intolerable than ambient factors like noise or light. These experiences underscored the critical importance of timely responses in ICU care:

My throat feels uncomfortable, and I'm having trouble breathing, but I can't find anyone. (9)

Nighttime presented particular challenges. Several participants reported reduced staff presence during the night, leading to delayed responses to needs such as thirst or dry eyes. The lack of prompt care during these hours often intensified feelings of helplessness, highlighting the need for more consistent nighttime rounds:

When the ICU went silent, you know it is night. It's impossible to call for anyone. (18)

In the first half of night, if you are thirsty and call for a while, you might still get a wet cotton swab in your mouth. But in the second half, you can forget about it. (1)

The clinical handover period was also a source of dissatisfaction. Some participants felt that care declined in the moments leading up to shift changes:

It feels like they stop working half an hour before their clinical handover. (4)

Despite these concerns, participants also recalled positive experiences. When needs were addressed promptly, they described staff as “supportive,” “timely,” and “thoughtful,” contributing to a sense of safety and gratitude:

They are truly responsible. They just sat next my bed, every time I call, they come right away. I’m really grateful for that. (3, 14)

Theme 2: ICU-Managed Transfer

Patients were typically informed of their upcoming transfer to a general ward during morning rounds. However, many reported prolonged waiting times due to shift changes, staffing shortages, and inefficient handovers between teams. Communication delays and limited bed availability in general wards further extended their stay in the ICU:

I waited a long time to be transferred to the ward, since they said the beds in the general ward have not been vacated. (5)

Participants also described physical discomfort during the transfer process, including pulled tubes, collisions with bed rails, and exposure to cold corridors. These issues highlight the need for careful handling and standardized protocols. Some suggested that regular simulation training could enhance coordination and reduce patient distress:

If the transfer is done more gently, it would be better. Colliding with the bed rails is truly unbearable. (8)

Additionally, several participants noted poorer interdepartmental coordination compared to within the ICU. Problems included missed meals and inadequate arrangements for personal belongings during the transition:

When I was discharged from ICU, it was noon, so I hadn’t been given any food. The ICU didn’t handle it, and the ward also said there was no food for me. What kind of situation is this? (9)

Informational Domain

Theme: Information Provision

Although ICU patients may experience altered consciousness, some reported periods of awareness. During these moments, timely and clear information about their condition and treatment is essential. Participants’ informational needs mainly focused on 2 areas: explanations of invasive treatments (eg, tubes) and clarification of routine nursing procedures such as medication administration and repositioning:

They told me they were going to take the ventilator off, but didn't tell me when. So I just waited and waited. When I finally saw someone come, they were called away. (1)

Patients in stable condition expressed a desire for guidance on early rehabilitation and nutrition. However, they noted inconsistencies between verbal instructions and actual care practices.

They told me to eat to improve nutrition, but some of the powdered supplements the hospital provided weren't even mixed for me to take. (18)

They said I could move around in bed, but when I tried moving my legs, they told me not to move too much or I might dislodge the tubes. (13)

Relational Domain

Theme 1: Caring Respect

Caring respect involves protecting patients’ dignity and conveying empathy through thoughtful communication. Participants expected staff to be professional, respectful, and attentive to their emotional needs. Some recalled negative encounters where they felt accused or mistreated:

After the tube was pulled out, I expected them to handle the situation and respond promptly, rather than scolding me, accusing me of deliberately pulling it out, and constantly complaining that I had disrupted their work. (4)

Due to mechanical ventilation, physical weakness, or communication barriers, patients often struggled to express their needs. While they understood staff workload, they hoped for more empathy. One participant shared a positive example where staff adapted communication tools to improve mutual understanding:

At first, they would frequently ask about my feelings and needs. Later, they gave me paper and a pen to write or draw, which made the expression clearer, so that they could understand me easier. (15)

Being in an unfamiliar ICU environment made many feel vulnerable. Participants suggested that regular emotional check-ins, even brief ones, could greatly ease their anxiety:

I know professionals are very busy, but I hope that when they have a moment, they can come to talk to me. Otherwise, I keep overthinking and it just makes me more scared. (16)

Clinical Domain

Theme: Professionalism in Healthcare

Patients often assessed the professionalism of ICU care based not on clinical knowledge but on how staff responded to critical events and how well they collaborated:

They didn’t even check after removing the catheter. Blood was all over the bed and blanket! (1)

Poorly handled emergencies, such as catheter dislodgement, left lasting negative impressions. In contrast, smooth teamwork during rounds and interventions reinforced patients’ trust in the care provided:

Even though I don’t understand their specialized ward rounds, I can tell they are all very professional and work well together due to the team atmosphere. (18)

Logistical Domain

Theme 1: ICU Environment

Key aspects of the ICU environment identified by participants include the call bell system, lighting, rest time, ambient noise, and facilities for family communication. Although nurses are typically stationed at the bedside, the nurse-to-patient ratio is often less than 1:1. When nurses leave to perform other tasks, a functioning call bell becomes crucial. Several participants reported issues with the call bell and ineffective responses after reporting malfunctions:

The call bell was broken, and telling the medical staff didn't help. I still couldn't get their attention. (17)

Patients acknowledged that lights, alarms, and staff activity—especially during night shifts—could disrupt rest but were often necessary. Some participants, lying quietly for long periods, expressed a desire for better temporal orientation:

During the night shift change, the lights were turned on, and they also talked about my condition. It did affect my rest a bit, but it was necessary. (14)

In the LICU, family communication is limited to hallway phones with low volume, making conversations difficult and diminishing the value of brief visits:

The sound of the visitation phone is too low, and most of the time, it's just ‘Can you hear me?’ (3)

Despite these challenges, most patients were satisfied with the ICU's cleanliness and the comfort of the bed. Some appreciated small touches, such as access to television, which helped relieve boredom:

They asked me if I wanted to watch TV, which is perfect because I enjoy having the TV on at home. (13)

Theme 2: Physical Comfort

Physical comfort involves both pain control and assistance with basic needs. Most participants identified pain—particularly postoperative pain—as a significant discomfort. While some were instructed in the use of analgesic pumps, others were unaware of them until after removal:

I only found out about the analgesic pump after it was removed. I was in unbearable pain in the ICU. (12)

ICU patients often rely entirely on staff for personal care, including eating, toileting, and mobility—activities they previously managed independently. This loss of autonomy impacted their dignity, but they expressed sincere appreciation for nursing support:

Taking care of someone's personal needs, like using the bathroom while in bed, is quite private, and it feels awkward to rely on others for such things. (10)

Theme 3: Family Visitation

Family involvement is critical for emotional support and recovery. However, nearly half the participants described short, infrequent visits and limited means of communication. Many felt that virtual contact, while not ideal, offered some comfort in the absence of in-person visits:

I mentioned this to the nurse, who said he could convey to my relatives anything if needed, and that family isn’t required in the ICU. However, there are some things I prefer to talk to close ones. Just having a video call can make me feel better, if they cannot come in. (16)

Discussion

This qualitative descriptive research aimed to explore factual patient experiences in the ICU. Based on interviews with 18 patients, we identified 8 key themes across 5 functional domains: organizational, informational, relational, clinical, and logistical. These findings provide critical insight into how ICU care is perceived by patients and where improvements can be made. The following discussion elaborates on each theme in connection with broader literature and clinical implications.

In recent years, the understanding and evaluation of patient experience have been continuously improved¹⁸ through the development of frameworks such as the ACO measures¹⁹ and the NHS Patient Experience Framework.¹³ However, the ICU is a unique setting, where patients often have different experiences compared to those perceived by healthcare professionals.²⁰ Previous studies have highlighted these differences, suggesting the need to explore ICU-specific aspects of patient experience. This study addresses that need by identifying 8 key themes that reflect patient perspectives and areas requiring further quality improvement.

Organizational Domain: Timely Response and Transfer Coordination

Rapid response to patient needs was a significant concern for participants, especially during the night. They reported delays in addressing basic discomforts such as thirst, breathlessness, or dry eyes. These delays appeared to be linked to reduced staffing levels and the absence of regular nighttime rounds.

This reflects broader issues related to human resource allocation. Some regions in Europe, the United States, and Australia have mandated ICU nurse-to-patient ratios of 1:1 or at least 1:2.^21,22 In contrast, Chinese ICUs often have a nurse-to-patient ratio of 1:2 or 1:3, which may compromise the ability to provide timely care.²³ Additionally, fatigue, circadian rhythm effects, and the absence of supervisors at night may contribute to a relaxed work attitude.²⁴

Patients also raised concerns about handover periods, during which they felt staff attention was reduced. This aligns with research showing frequent interruptions during clinical handovers, undermining continuity of care.²⁵ Improving staff allocation and standardizing care during night shifts and handovers is essential to ensure uninterrupted patient support.

The second organizational issue—ICU-managed transfer—highlighted delays in transferring patients to general wards. Participants reported long waiting times due to poor interdepartmental coordination, shift overlaps, and bed shortages. Inadequate protocols during transfers also caused discomfort and distress, suggesting a need for routine simulation-based training and standardized transfer procedures. Additionally, handover-related logistics such as meal provision and belongings management were often neglected, highlighting areas for system-level improvement.

Informational Domain: The Need for Clarity and Consistency

Patients expressed a strong desire for clear, consistent information about their treatment and care. Although ICU patients may have altered consciousness, many remained aware of procedures being performed and expected explanations—especially regarding painful or invasive interventions.

Effective communication and transparent information provision can reinforce the relevance of SDM in the ICU. Despite patients’ clinical vulnerability, those who were conscious expressed a need to understand and participate in care-related decisions. Previous studies have shown that SDM improves trust, reduces anxiety, and enhances patient satisfaction in critical care.²⁶ However, conflicting messages from staff—such as being told they could move, then being warned not to—created confusion and frustration. Effective implementation of SDM in the ICU context requires structured, empathetic communication that adapts to patients’ condition and cognitive state. Even subtle communication strategies, as highlighted by Rouhi and Millstein (2022), can positively influence patient engagement.

Relational Domain: Humanistic Care and Emotional Support

The theme of Caring Respect underscored the emotional vulnerability of ICU patients and their sensitivity to staff behavior. Participants emphasized the importance of respectful, empathetic interactions and lamented experiences of being misunderstood, scolded, or ignored—particularly when unable to speak due to ventilation or weakness.

This aligns with research showing that emotional support—including empathy, reassurance, and genuine concern—is a critical dimension of social support in the ICU.²⁷ Nurses, who spend the most time with patients, are uniquely positioned to provide this support.¹⁴ However, studies also indicate that ICU nurses’ communication skills are often weaker than those in general wards.²⁸

Nonverbal communication, in particular, is underutilized in ICUs due to high stress and task-oriented workflows.²⁹ Participants appreciated simple interventions like paper and pen for communication or occasional emotional check-ins. Generally, effective communication with critically ill patients—especially those with ventilation, weakness, or language barriers—requires careful attention.^30,31

Clinical Domain: Perceptions of Professionalism and Safety

Although most patients lacked the technical knowledge to evaluate clinical expertise directly, they judged professionalism in healthcare through visible indicators such as teamwork, organization, and responses to emergencies. Negative experiences included unmanaged bleeding and panicked staff reactions during catheter dislodgement.

These findings support the idea that team coordination and visible competence create a sense of safety for patients. Positive perceptions arose when staff responded efficiently and worked cohesively. These impressions matter—patients often remember critical incidents more vividly than routine care. Maintaining a calm, structured team dynamic can improve not only outcomes but also patient trust.³²

Logistical Domain: Environment, Comfort, and Family Visitation

Patients’ feedback on the ICU environment highlighted several modifiable factors. While noise and light were generally tolerated as necessary, broken call bells and unclear instructions limited patients’ ability to seek help. Some felt disoriented due to the lack of clocks or communication devices. These findings echo recommendations from the European Society of Intensive Care Medicine, which proposed environmental modifications such as intercom systems, manual alarms, large clocks, and patient-accessible phones.³³

Physical comfort, including pain management and assistance with daily activities, was a major concern. Some patients were unaware of available analgesia options, while others expressed embarrassment over their dependance on staff for basic needs like toileting. This underscores the need for proactive pain education and compassionate daily care routines.

Lastly, family visitation was frequently cited as insufficient. Limited visitation time, strict policies, and inadequate communication tools (eg, phones with low volume) left patients feeling isolated. Despite nurses’ efforts to bridge the gap, patients expressed a strong emotional need for direct or virtual contact with loved ones. Family involvement not only provides emotional support but also contributes to recovery and patient-centered care.

Limitation

This single-center study with a small sample size in China may have limited generalizability. Survivor bias is possible, as terminal and unconscious patients were excluded, and most had short ICU stays. The broad research scope suggests that some elements require further exploration. Additionally, while diagnoses were categorized to show sample diversity, needs were not compared across disease systems.

Conclusion

In summary, this study provides a patient-centered perspective on ICU care across 5 domains and 8 themes. Further investigation of actual ICU experiences is needed to refine the ICU patient experience framework and tailor patient-centered care to contemporary needs. A well-structured framework can inform the development of a patient-reported experience measure, ultimately enhancing ICU service quality.

Consent to Participate

All participants provided written informed consent prior to data collection.

Supplemental Material

sj-docx-1-jpx-10.1177_23743735251353691 - Supplemental material for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study

Supplemental material, sj-docx-1-jpx-10.1177_23743735251353691 for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study by YuChen Tao, WenYan Pan, Xiao Chen and YuXia Zhang in Journal of Patient Experience

Supplemental Material

sj-docx-2-jpx-10.1177_23743735251353691 - Supplemental material for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study

Supplemental material, sj-docx-2-jpx-10.1177_23743735251353691 for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study by YuChen Tao, WenYan Pan, Xiao Chen and YuXia Zhang in Journal of Patient Experience

Supplemental Material

sj-docx-3-jpx-10.1177_23743735251353691 - Supplemental material for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study

Supplemental material, sj-docx-3-jpx-10.1177_23743735251353691 for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study by YuChen Tao, WenYan Pan, Xiao Chen and YuXia Zhang in Journal of Patient Experience

Supplemental Material

sj-docx-4-jpx-10.1177_23743735251353691 - Supplemental material for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study

Supplemental material, sj-docx-4-jpx-10.1177_23743735251353691 for A Further Exploration of the Elements of ICU Patient Experience in the Chinese Context: A Descriptive Qualitative Study by YuChen Tao, WenYan Pan, Xiao Chen and YuXia Zhang in Journal of Patient Experience

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Critical Care Project of Shanghai Shenkang Hospital Development Center: Construction of an Informatized Teaching Platform for Critical Care Nursing (Grant No. SHDC22023229).

Ethics Statements

Zhongshan Hospital Fudan University Ethics Committee Approval No. B2024-422R.

ORCID iD

YuChen Tao

Supplemental Material

Supplemental material for this article is available online.

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