Experiences of healthcare professionals and patients regarding patient privacy in ICU

Abstract

Background

Intensive care is essential for critically ill patients who experience loss of personal identity and restricted physical and emotional expression. However, patient privacy in Intensive Care Units (ICUs) remains inadequately protected, with both patients and healthcare professionals (HCPs) reporting breaches. Cultural backgrounds and individual perspectives of patients and HCPs significantly shape their views on privacy. In China, discourse on ICU patient privacy is still in its early stages.

Research aim

This study aims to explore the experiences of HCPs and patients regarding the patient privacy in ICU under the Chinese background.

Research design

A qualitative study was conducted using purposive sampling methods for semi-structured, face-to-face, in-depth interviews, followed by thematic analysis to identify key themes.

Participants and research context

Six focus-group interviews (with a total of 33 nurses) were conducted, while seven doctors and 10 patients were interviewed individually from March to July 2024 at a tertiary hospital in China.

Ethical considerations

This study was approved by the hospital’s Ethics Committee (reference number: 2024-L-158). Informed consent was obtained from all participants, and data confidentiality was ensured through anonymization and encrypted storage.

Findings

Four themes were identified: (1) the coexistence of consensus and disagreement regarding privacy scope; (2) the paradoxical perception of privacy protection; (3) conflicting responses to privacy violation and (4) much has been done, but more is needed.

Conclusions

Minimizing exposure of ICU patients’ private areas and protecting their information are essential to safeguarding privacy. Education and training in bioethics can enhance HCPs’ sensitivity to ethical issues and improve practices regarding privacy protection. Teaching resilience and stress management can help mitigate psychological distress associated with privacy violations in ICU patients. Additionally, promoting HCPs’ privacy awareness, limiting visits by opposite-sex family members, and enhancing HCPs’ empathy are key strategies in this context.

Introduction

As a fundamental human right protected by many national laws, patient privacy is essential for ensuring patient safety, respecting individual dignity, and fostering mutual respect and effective relationships in clinical settings.^1,2 The protection of patient privacy serves to safeguard individuals from feelings of embarrassment, offense, judgment, stigma, and discrimination. ³ The violation of patients’ privacy may result in the loss of essential human qualities, including self-awareness and autonomous decision-making. ⁴ Cultural awareness is sensitivity and awareness of probable personal reactions and biases in the various cultural worlds, which affects the person’s perceptions and actions, leading to different cultural perspectives on privacy.^3,5,6 Studies suggested that privacy includes indecent body exposure, multi-gender conditions and informational privacy. ⁷ Considering gender homogeneity when assigning nurses to patients, discussing patient issues in a private conference room, and adhering to confidentiality principles all contribute to respecting patient privacy. ⁷ Research indicates that older Chinese individuals found it easier to exert control over psychological and social privacy, leading them to value these aspects more while placing less emphasis on physical and informational privacy. ⁸ Nowadays, it is advocated that interventions based on stakeholders’ perception can improve health outcomes. Therefore, it is imperative to explore patients’ and healthcare professionals’ (HCPs’) experiences regarding patient privacy, particularly through the lens of cultural contextualization. This study examined the experiences of HCPs and patients regarding patient privacy in the intensive care unit (ICU) while systematically considering the critical role of cultural awareness. Both sides’ viewpoints contribute to identifying critical areas for advancing privacy protection.

Background

The issue of patients’ privacy is more prominent in the ICU. Patients in the ICU must relinquish partial or even complete control of their bodies to HCPs because of the severity of their illness and the necessity of their treatment. The open physical architecture of the ICU, the cohabitation of patients with varying ages, genders, and health conditions, and regular family visits all make it challenging for HCPs to safeguard patient privacy.^9,10 Research has reported that ICU patients were subjected to varying degrees of exposure of bodily parts, particularly the intimate areas such as the chest, and genitalia. ⁴ Furthermore, about 40% of ICU caregivers reported that care was provided often or always without closing the door. ¹¹ Nurses in the ICU held the view that despite concerns about patient privacy, the lack of physical protection was evident, and they frequently overlooked comatose or sedated patients. ⁴ Previous studies also reported that both patients and HCPs perceived a breach of patient privacy.^4,12 All of the above indicate that the privacy of ICU patients has not been adequately safeguarded.

Research has shown that conducting education on patient privacy and patient rights regulations for HCPs, formulating guidelines and policies for patient safety and privacy, and supervising the implementation of responsible agencies and departments can help improve patient privacy.^2,13 However, most of the above measures were considered from the perspectives of hospitals and HCPs, and little is known about the patient’s position and viewpoints. Given that interventions informed by medical stakeholder perspectives can enhance health outcomes, it is crucial to grasp the opinions of patients and HCPs regarding privacy and to create measures based on their viewpoints. ¹⁴ However, a systematic review indicated that the privacy concept has been overly simplified, and present qualitative research has failed to explore the privacy in depth. ¹⁵ In addition, most studies about patient privacy focus on whether there are concerns rather than why or what aspects to focus on, with little insight into knowledge users. ¹⁶ Investigations specifically targeting the opinions of patients and HCPs regarding patient privacy in the ICU, whether qualitative or quantitative, are still in their infancy and need further exploration.

The term “privacy” was translated from English and introduced to China in the 1980s. In Chinese, “privacy” is referred to as yinsi (隐私), where the word “yin (隐)” means “hide,” as opposed to the gong (公, public), and the word “si (私)” means “private” or “privacy,” which had long been used as an antonym to guan (官, official). ¹ Yinsi (隐私) is narrowly understood as that individuals do not want to disclose events to the public, which are mainly related to internal secrets or scandals related to personal reputation. ¹⁷ Therefore, the word yinsi (隐私) has a negative meaning in Chinese in the past. In the contemporary era, while Chinese individuals no longer view privacy narrowly as a scandal, instead considering it as encompassing all information they wish to conceal, traditional values continue to exert a profound influence on their thinking and behavior. ¹⁸ In addition, influenced by Confucianism, China always advocates collectivism, and mutual care and help are symbols of unity and harmony. Therefore, people have closer relations with each other, more trust in close people, and less privacy. ¹⁷ These cultural background factors underscore the importance of exploring the perspectives of HCPs and patients regarding patient privacy in China, particularly in the ICU.

Aims

The aim of this study was to explore the perspectives of HCPs and patients regarding patient privacy in the ICU in China and gather information to create culturally appropriate privacy protection measures for Chinese patients.

Methods

Study design

A qualitative study was conducted in this study. This method places emphasis on the role of life experience and seeks to investigate and elucidate phenomena of interest, thereby offering a novel perspective on the essence of individual consciousness. ¹⁹ This is consistent with our research aims. The consolidated criteria for reporting qualitative studies (COREQ) checklist was used to report this study (see Supplemental file). ²⁰

Setting and sampling

This study was conducted in three ICUs of a tertiary hospital of a medical university in Yunnan Province, China. It provides medical services for patients from the province and surrounding provinces. Additionally, the province is home to the largest concentration of ethnic minorities in China, who adhere to diverse traditions and lifestyles that may have different impacts on patients’ thinking. ²¹

The purposive sampling method was used to recruit patients and HCPs from a tertiary general hospital in Yunnan Province with different ages and genders. Patients were recruited with the aid of three head nurses in the ICU units. The inclusion criteria for patients were as follows: patients aged over 18 years and had been admitted to the ICU for more than 48 hours; recovered from the serious condition in the ICU; voluntarily participated and signed an informed consent form, and were able to communicate, express, and recall information-rich experiences. Patients who were in a long-term coma during hospitalization, as well as those with mental disorders and end-of-life patients, were excluded from the study. Participants who have experienced the phenomena of interest are essential to obtaining detailed, meaningful description. Doctors and nurses are the main caregivers during patients’ hospitalization in the ICU, who can observe or experience patient privacy in the ICU and may provide rich and detailed information. HCPs were doctors and nurses, and they were invited by the research team. The inclusion criteria for doctors and nurses were as follows: at least 1 year of experience working in the ICU, signed informed consent forms, and were proficient in communication. Doctors and nurses unwilling to participate or being interrupted by treatment or examination were excluded.

Data collection

Face-to-face semi-structured interviews were conducted between the researchers and the participants from March to July 2024, including 17 one-on-one interviews and six focus-group interviews. Seven doctors and 10 patients were interviewed individually. Six focus-group interviews with a total of 33 nurses were conducted, among which four groups were consisted of six nurses in each group, and another two groups were consisted of four and five nurses, respectively. All one-on-one interviews were carried out by a single researcher (Y.Z., Y.W.), and focus-group interviews were facilitated by two researchers (Y.Z., Y.W.). They were female master’s candidate students at a medical university and had received training in qualitative interviewing. They carried out the study under the guidance of a professor with extensive experience in qualitative research for better interview techniques and reflexive thinking. The interviewers disseminated recruitment information to HCPs in three ICUs, including the geriatric ICU, comprehensive ICU, and emergency ICU. The recruitment of patients was conducted when their condition was stabilized, and patients were transferred to the general ward before their discharge. During recruitment, researchers explained the study’s objectives and significance. After expressing interest, participants received informed consent forms, and their demographic information, including age, occupation, and nationality, was documented.

The interview guide (see Table 1) was developed according to the research aims and was continuously adjusted during the data collection and analysis process. The interviews were conducted in a quiet conference room in each ICU or general ward, with only the interviewers and participants present. The interviewers used clear and accessible language to engage with participants and tried to separate their perspective from participants’ perspectives, minimizing potential bias. No prior relationship was established with participants before the interviews. A voice recorder documented participants’ verbal contributions, while a notebook was used to record participants’ nonverbal communication and field notes, which were also part of the data and could help in the data analysis process. ²² The interviewers transcribed the interview data verbatim within 24 hours. After each interview, the accuracy of the discussed information was verified by both the interviewers and participants. Therefore, interview records were not returned for feedback. All interviews were conducted in Chinese, and after data analysis, the quotations used to support the findings were translated from Chinese to English by two bilingual translators following the forward-back-translation procedure and validated by other researchers to ensure meaning preservation.

Table 1.

Interview guide.

Patients	Healthcare professionals
What should be included in a patients’ privacy?
Did your privacy be violated during your stay in the ICU? Please share your thoughts and experiences at that time	What practices of medical staff have violated patients’ privacy?
How should healthcare professionals protect your privacy?	What do you think causes the invasion of patient privacy?
	How can we protect the privacy of patients?

No participants withdrew during the course of the study. A total of 23 interviews were conducted, with each interview lasting between 20 and 60 minutes. No repeated interviews were conducted. Four pilot face-to-face interviews were conducted prior to the commencement of the formal interviews, and these were not included in the final data analysis. Data collection was stopped when data saturation was reached and no new perspectives were found in subsequent interviews. ²³ After six focus-group interviews and 16 one-on-one interviews (five doctors and nine patients) were conducted and analyzed, no new themes were identified from the subsequent interviews. To ensure that no new information would appear, a further three participants (two doctors and one patient) were interviewed.

Data analysis

The collated data were imported into the NVivo 12 software for management and analysis. Data were added to NVivo as data collection continued, and analysis occurred iteratively. Thematic analysis was employed to identify relevant themes for this study using Braun and Clarke’s six-step approach.^24,25 Y.Z. and F.M. did the data analysis independently. Y.Z. was a current third-year graduate student in nursing and had been trained in qualitative research methodology, and F.M. was the supervisor who had expertise in qualitative research. Initially, researchers (Y.Z.,F.M.) listened to audio recordings repeatedly and manually transcribed the data, ensuring comprehensive familiarity through repeated readings of the dataset. Next, they developed brief and rich initial codes related to the research question. A review and analysis of these codes followed to combine those with shared meanings, forming themes and subthemes. The potential themes were then recursively examined in relation to the coded data and the overall dataset. Subsequently, the researchers defined and named the themes, linking each to the dataset and research question through detailed analysis. The final step involved producing a report, which was intertwined with the analysis process, and the results were reviewed and confirmed by all researchers.

Rigor and trustworthiness

Lincoln and Guba’s framework of credibility, confirmability, transferability, and dependability was used to achieve trustworthiness in this study. ²⁶ To ensure credibility, long-term engagement of the researchers with the data, reflexivity, member checking with participants, and peer debriefing were performed. Confirmability was established using the researchers’ field notes regarding personal feelings, biases, and insights immediately following the individual interviews. To improve the transferability of the findings, the samples were selected to be as diverse as possible, and in-depth and rich descriptions of the findings were provided. Dependability was ensured by providing a detailed description of the research methods and having peers participate in the analysis process. Data triangulation was also used, including persons (semi-structured interviews with a variety of patients, physicians and nurses) and space (three ICUs of a tertiary hospital). In addition, two nurses with postgraduate training experience in qualitative methods conducted the interviews, which helped to achieve credibility and reliability. Two experienced researchers independently analyzed the data. The disagreements in the research were discussed and resolved through frequent meetings.

Ethical considerations

This study has been approved by the Ethics Committee of the First Affiliated Hospital of Kunming Medical University on February 5th, 2024 (reference number: 2024-L-158). All participants received written and verbal information about the study, and their written informed consent was obtained before the data collection. The participants were assured that the conversations would remain confidential and anonymous. Participants’ data were encrypted and stored securely on encrypted devices, and access was limited to the authors only. Further, no identification of individual participants or users in any images occurred in the manuscript or supplementary material. Participants’ quotes in this study were marked with a code, such as “P” for patients, “D” for doctors, and “N” for nurses. In addition, participants had the right to withdraw from the study at any time, and they were assured that their lack of participation or withdrawal would have no consequences for them. Participants were informed that it was alright to say that they did not want to answer a specific question. There are psychologists in the hospital who could be contacted if participation in the study caused the participant to feel sad or upset.

Results

Participant demographics

A total of 33 nurses participated in six focus-group interviews, which included two male nurses and 31 female nurses. In the nursing profession, one of the most gender-segregated professions, only a small number of male nurses could be found to participate in this study. ²⁷ Additionally, 10 patients, consisting of six males and four females, along with seven doctors, comprising two males and five females, participated in personal interviews. Table 2 summarized the demographic data of the participants.

Table 2.

Characteristics of participants.

Role		N (%)
Healthcare professionals	Doctors	7 (14)
	Nurse	33 (66)
Patients		10 (20)
Gender
Healthcare professionals	Male	4 (10)
	Female	36 (90)
Patients	Male	6 (60)
	Female	4 (40)
Education
Healthcare professionals	Bachelor’s degree	32 (80)
	Master’s degree	8 (20)
Patients	Primary school	1 (10)
	Junior high school	1 (10)
	Senior high school	2 (20)
	Bachelor’s degree	6 (60)
Marital status
Healthcare professionals	Married	11 (27.5)
	Single	29 (72.5)
Patients	Married	10 (100)
Healthcare professionals’ working experience
1–5 year		29 (72.5)
>5 year		11 (27.5)
Age of all participants
20–35		39 (78)
36–50		5 (10)
51–65		3 (6)
66–75		3 (6)
Nation of all participants
Han		44 (88)
Yi		4 (8)
Bai		2 (4)
Patients’ occupation
Farmer		3 (30)
Civil servant		4 (40)
Self-employed laborer		1 (10)
Teacher		1 (10)
Unemployed		1 (10)

Themes

Four themes were generated through the data analysis that represent HCPs’ and patients’ viewpoints regarding the patient privacy in the ICU.

Theme 1: The coexistence of consensus and disagreement regarding privacy scope

When talking about what composed privacy in the interviews, patients and HCPs agreed that due to the physical architecture of the ward, male and female patients would be arranged in the same ward, which was against privacy protection, and this problem was a serious issue.

“In the large ward, there are no separate rooms for male and female patients, and people with different levels of consciousness stay together. That is the violation of privacy.” (D4)

“Inside (ICU), there were all men around, except for me who was a woman. They looked at me, which made me feel exposed. This is my privacy, and I don’t want to be seen by others.” (P7)

At the same time, some disagreements occurred concerning the scope of privacy. Being naked and discussing disease information was considered important aspects of privacy, while others upheld opposite opinions, believing that nudity and the disclosure of disease information would facilitate the treatment of disease.

“When the patient enters the ICU, we need to take off his/her clothes, which will violate the patient’s privacy.” (Group 2, N2)

“I would think that I am a patient at the moment, removing clothes is more convenient for treatment, and I think this does not constitute a violation of privacy.” (P3)

“Doctors should discuss my condition and seek better treatment methods, this is their routine.” (P10)

Theme 2: The paradoxical perception of privacy protection

Some participants maintained that privacy protection was feasible. They reflected that during the process of operational procedures, HCPs could utilize additional items or clothing to cover all body parts except for the operating area, thereby enhancing the protection of patient privacy.

“Being naked is infringement of privacy and should be avoided. When we are doing an abdominal examination, we can protect other areas and not pull the blanket apart completely. Just expose the required part…” (D7)

“Many times the private parts can be completely covered.” (P2)

In contrast with the aforementioned viewpoints, some participants asserted that the protection of privacy was infeasible within the context of the ICU environment. Some HCPs indicated that most ICU patients either had blurred consciousness or were in a coma, rendering them susceptible to emergency rescue at any moment, and saving life is the priority instead of privacy protection. Furthermore, ICU patients were with a multitude of tubes inserted throughout their bodies. To observe patients from all angles and rescue them immediately, sometimes HCPs had to sacrifice privacy to save lives.

“In ICU, the most important thing is to ensure any abnormal condition could be identified immediately, and patients’ safety are guarded. In this situation, privacy has been placed in a suboptimal position.” (D1)

“The majority of ICU patients are unconscious, so we need to monitor their skin without any covering, and check various pipelines... This makes it challenging to maintain privacy protection.” (Group 2, N3)

Theme 3: Conflicting responses to privacy violation

Some participants reflected their ICU hospitalization experience as traumatic. They remembered that during their urination and defecation, there were people around them, which made them feel embarrassed and uncomfortable, but there was nothing they could do about it. Some patients were scared when they were naked and watched by other patients, which was a horrible experience, and they couldn’t forget that.

“As soon as I entered the ICU, my clothes were stripped off, and I didn’t even have any underwear…When urinating in bed, others were watching. Where is the privacy? I feel very sad and embarrassed.” (P2)

“When I was in the ICU, on the first day, I wasn’t very conscious, but when I woke up later, those patients around me could see everything clearly. They looked around me, and I wasn’t dressed properly and I had no privacy. I was very scared, and I still feel terrible now.” (P7)

In contrast, some participants thought that in the ICU, HCPs would be able to cure their illness and save their lives in the critical moments. Even sometimes their privacy might be violated, such as being naked in the ward; they would feel uneasy and distressed initially, but later they tended to view this as normal because all the HCPs had done were to save their lives, which was considered a priority in the views of patients.

“At first, I felt embarrassment and distressed because I was stripped naked as soon as I entered, my privacy was violated…but then I quickly realized that doctors were saving my life. They are all professionals, and there must be a reason for what they had done…this is normal.” (P3)

Theme four: Much has been done, but more is needed

Some participants thought that they had done their best to protect patients’ privacy. For instance, they did not discuss patients’ disease conditions in front of other patients. In addition, they covered patients with blankets to avoid the exposure of their private parts during some procedures.

“We do not talk about patients’ diseases in front of other patients, nor do we gossip about why they had contracted such diseases, because those behaviors are wrong.” (Group 2, N1)

“We often make sure to cover the patient after each operation, even if they are unconscious.” (Group 1, N1)

Some participants stated that they meticulously contemplated the patients’ ethical standpoint and refrained from exposing the patients’ privacy in the presence of opposite-sex family members or relatives. In addition, when patients regained consciousness, HCPs would arrange them in a separate room or surround them with a screen.

“During the visit, we were wiping the female patient’s stool when her brother and father insisted on coming in, but we refused because this is unethical...Her private parts were exposed outside, and different sex family members are not allowed to come in. If her mother came, perhaps I would let her in.” (Group 3, N2)

It is evident that there are still areas that require improvement, as highlighted by some HCPs. These include the improvement of HCPs’ awareness and relevant legal knowledge of patients’ privacy protection.

“I think one of the important reasons why our privacy protection is not well done is that our nurses’ awareness of privacy is too weak…” (Group 1, N5)

Some participants asserted that the most crucial aspect is to treat patients real person, because this will prompt HCPs to consider the privacy needs of patients and to treat them with the respect and consideration they deserve.

“I think you should first treat the patient as a real person. When doing the operation, do your best to cover him up, and talk to him and let him know what you want to do next. I think it’s still very important.” (Group 5, N1)

Discussion

To our knowledge, this is the first study in China to explore the experiences of patients and HCPs on patient privacy in the ICU. The participants in our study exhibited coexistence of disagreement and consensus on the scope of privacy. They unanimously believed that the physical structure of the ICU increased the invasion of patient privacy. This is consistent with multiple studies that have identified ICU environments as an important issue of privacy exposure.^4,28,29 In the development of nursing, the four metaparadigm concepts of human beings, environment, health, and nursing are highly represented in the field of nursing knowledge.^30,31 The interaction between the environment and human beings has the potential to exert a beneficial or detrimental influence on individual health and well-being. For example, patients being in the same large ward is beneficial for ward members to help and support each other. ³² However, it is evident that it increases the probability of patient privacy exposure. Since 1978, Chinese ethics has undergone new developments; collectivism has gradually been giving way to individualism, and the new collectivism accordingly begins to reflect on the issue of individual privacy and call for physical personal space.^18,33,34 It is also required by the UK that ICU bed spaces need to be ample for the equipment required, and protection of patient privacy and dignity is also recommended. The USA has also suggested new designs in patient care to enhance privacy, calling for improving patient confidentiality, privacy and social support by building ICUs with single bedrooms that include space for families. Similar standards in relation to patient privacy exist in other countries. ³⁵ Furthermore, patients themselves also reflect personal domain being invaded as shameful and they advocate for being isolated in order to protect their privacy.^29,36 Therefore, strengthening environmental support, especially the physical environment (e.g., equipment and facilities to protect personal physical space), is crucial for protecting patient privacy.

The contradictions in participants’ views on privacy might be related to cultural theories or demographic factors. It has been evidenced that age discrimination in hospitals was the cause of unfair care and the main cause of violation of older adult patients’ rights. Age-biased attitudes toward old people might lead to neglect of older adult patients in the provision of medical and nursing care. It is therefore important to develop a culture of respect for older adults through continuing education programs. ³⁷ Opposite views existed regarding nudity being considered as privacy or not. Some participants believed that their physical bodies being exposed violated their privacy, while others thought that these exposures were for disease treatment. This reveals the relativity, dynamism, and inconsistency of patient privacy. ³⁸ Physical privacy is an important aspect of ICU patients’ privacy, and some patients are extremely resistant to the exposure of their physical bodies.^9,39,40 According to the dignity model of Edlund et al., the patients’ body serves as the carrier for external relative dignity. ⁴¹ Consequently, when the body is exposed, the patient’s dignity is irrevocably compromised. Additionally, in ancient times, people covered their bodies with leaves and hides, suggesting that the earliest understanding of privacy related to the private parts of the body. ¹

Contrary to the previously articulated viewpoints, some participants perceived the exposure of bodies as just a part of the treatment process, and this practice did not constitute an invasion of privacy. The present study suggests that patients’ perceptions of privacy change with their health status, and illness diminishes the privacy levels of patients. ³⁸ According to attachment theory, the need for attachment is activated in adults when they are ill. ⁴² ICU patients will seek attachment figures such as doctors and nurses to help them feel safe during their ICU stay, and the exposure of their bodies to their attachment figures is normal instead of a violation of privacy. In addition, some patients might prefer a paternalistic dynamic and are keen to do what the doctors decided was best for their care, and they consider nudity will help HCPs in the treatment and care of patients. ⁴³ However, through the ages the doctor–patient relationship has changed, and a more active, autonomous, and patient-centered role for the patient has been advocated for, which highlights that nudity of ICU patients does not show respect for patients’ autonomy and violates their privacy. ⁴³ It is therefore imperative to avoid exposing private parts as much as possible to maintain the dignity of patients.

Regarding disclosure of disease information, some participants considered it a key aspect of patient privacy, which is also supported by other research. ⁴⁴ It has been evidenced that frequent communication and exchange among HCPs in the ICU might lead to the leakage of patients’ personal information.^4,45 Furthermore, the present study showed that HCPs often engaged in casual discussions about specific patient issues, such as in elevators or during informal gatherings. ⁴⁶ The above inappropriate behaviors may result in the unauthorized disclosure of patients’ personal information, which leads to patients’ concerns about their privacy infringement, such as HCPs’ unnecessary intrusion into their private lives and marital relationships. ⁴⁷ However, disclosure of disease information was not considered as privacy violation by some participants. This phenomenon may arise from the “shameful secret” linked to the concept of privacy (yinsi, 隐私) within Chinese culture. ¹⁸ In their view, the information that doctors discuss is about disease treatment instead of scandals related to personal reputation, which falls short of their traditional yinsi (隐私) category. Trust between HCPs and patients will lead to the perception that information disclosure is normal and not considered as privacy violation. ⁴⁸ In addition, theories of privacy calculus describe behaviors related to privacy as the outcome of how individuals weigh the costs and benefits of disclosing information or using privacy settings. People may focus on risks and benefits of information disclosure diversely, leading to different interpretations of privacy as for disclosure of disease information. ⁴⁹ Given the importance of limiting data disclosure, measures to ensure the privacy of personal information have been discussed among HCPs and patients. ⁵⁰ It is highlighted that HCPs should carefully restrain their behavior in any situation to safeguard patient information security.

The participants exhibited a paradoxical perception of the feasibility of protecting patient privacy in the ICU. Our participants stated that avoiding unnecessary exposure to protect patient privacy was feasible, such as exposing only the local area during rescuing, and this is consistent with a study from the perspective of nurses. ⁵¹ Present studies have also evidenced that with the increasing emphasis on patient privacy in healthcare systems and the existing code of ethics guiding the practice of health professionals, both perceptions and practices about patient privacy protection among HCPs are generally good. ⁵⁰ However, some HCPs overlooked certain behaviors that posed a threat to patient privacy and considered privacy protection as infeasible. In the ICU, patients frequently require a range of medical monitoring and treatment measures due to the severity and uncertainty of their condition, including the placement of various pipelines and the delivery of medications, among other procedures. In emergency situations, HCPs typically consider the patient’s life as their top priority and may overlook patient privacy to preserve their lives.^3,52 Furthermore, the often open layout of the ICU environment provides an opportunity for nurses to continuously monitor and observe critically ill patients. At the same time, it compromises patients’ privacy, and privacy protection may be considered infeasible by HCPs in this sort of open-plan environment in the ICU. ³⁵ In addition, due to the insufficient numbers of nurses and the high number of patients per nurse, they could not take adequate measures to protect patient privacy and considered privacy protection as infeasible. ⁴⁴ The misunderstanding of privacy protection being infeasible may be due to the low ethical intelligence and a lack of awareness of HCPs’ own actions.^51,53 Through reflective practice and staff bioethics education and training, HCPs might be sensitive to ethical issues and provide good practice, and institutions should build an ethical environment and climate, which can help HCPs establish an appropriate understanding of patient privacy.^53,54

The responses to unprotected privacy reported by participants included both traumatic and normal. Some participants stated that the violation of privacy had a profound impact on patients’ mental health, leading to emotional trauma and ongoing psychological distress. These findings are consistent with previous research.^3,9,29,55 However, some patients rationalized their experience of privacy infringement. This may be attributed to the fact that patients prioritize their recovery and place emotions in a secondary position. ⁵⁶ They perceive themselves as a vulnerable group with no autonomy and thus accept and respect the instructions of HCPs unquestioningly. Hence, they consider that whatever the HCPs do will help them instead of traumatize them. The dominance of HCPs over patients is more prominent in traditional Chinese culture, where hierarchical norms rooted in Confucianism grant doctors and nurses significantly higher authority within the healthcare system. Therefore, patients tend to view such breaches as a normal procedure in the therapeutic process. In addition, patients’ ICU experience acts as a trigger and enables patients to re-examine the meaning of their lives, leading to a sense of “rebirth” and positive emotions related to survivorship instead of traumatic responses to privacy violation. ⁵⁷ Furthermore, the different responses to unprotected privacy might be related to resiliency, which provides a framework for understanding why some patients experience significant emotional distress and others do not following similar medical traumas. ⁵⁸ Therefore, attention should be paid to the mental health status of ICU patients when providing care that involves privacy. Cognitive behavioral therapy or mindfulness-based programs that teach resiliency and stress management skills can be used to alleviate psychological distress in ICU patients during recovery.

Although privacy protection is challenging in the ICU, our participants made significant efforts to protect it, such as refraining from disclosing patients’ information in front of others and trying to cover the patient’s body as much as possible. This reflects HCPs’ emphasis on protecting patient privacy and their increasing awareness of privacy. This is consistent with previous research.^29,51,59 However, our participants also indicated that there is considerable scope for further enhancement of HCPs’ awareness of privacy protection. This has also been mentioned in multiple studies.^45,60–62 HCPs must be aware of their ethical conduct and maintain a strong sense of awareness to effectively address the risks of dehumanization and devaluation in nursing within the ICU. ²⁹ Enhancing HCPs’ self-awareness can encourage them to constantly reflect on and understand their personal thoughts, feelings, beliefs, and values, and consciously use this understanding to guide their behavior. ⁶³ Therefore, healthcare staff trainings on privacy, such as educational, welfare, managerial, motivational, and job-related programs, should be held on a regular basis, and hospital administrations should put policies in place to ensure the protection of patient privacy in ICUs. ⁵³

Our participants believed that allowing opposite-sex relatives (excluding spouses) to view the patient’s body was inappropriate and would violate patients’ privacy, which can be explained from a Chinese traditional moral standpoint. As the Chinese book “The Book of Rite” emphasizes that “males and females should be distinguished.” ⁶⁴ Due to physiological and psychological differences between men and women, distinct etiquette and laws should apply. Similarly, it is also supported by other research in different cultural backgrounds that an instance of privacy violation is exposing a patients’ body in the presence of opposite-gender personnels, which may cause patients discomfort and violate their privacy. ⁶⁵ Therefore, it is necessary to avoid visits or accompaniment by opposite-sex family members and relatives during procedures involving bodily exposure.

Our participants stated that to protect the privacy of patients, patients should be treated as unique person, which will prompt HCPs to respect their privacy rather than view them as a mere entities. This conclusion is supported by a substantial body of research findings.^{7,29,41,52,55} When patients are not recognized as unique individuals and are not accorded the seriousness they deserve by HCPs, their dignity is consequently undermined. ²⁹ Empathy is a valuable quality for HCPs when safeguarding patient privacy.^66,67 HCPs are capable of empathizing with patients through empathy, acknowledging and comprehending their pain, and consequently approaching it from their perspective. Therefore, the measures that are conducive to cultivating HCPs’ empathy are crucial.

Limitations

The participants in this study were drawn exclusively from one province in China, and there were notable cultural differences among patients in different regions, which limited the generalizability of the results. Further research could be conducted between hospitals and populations in different regions in the future. Furthermore, a longer-term follow-up period may yield valuable insights from these individuals. In addition, the sample distribution was imbalanced due to patients’ serious condition and unwillingness to participate, and physicians’ busy schedule and unavailability during the research period. Further studies could involve more patients and physicians.

Conclusions

This study revealed both converging and diverging viewpoints from patients and HCPs regarding patient privacy in the ICU under the Chinese background. Perceived privacy is relative and influenced by individual cognition. To protect patient privacy, the physical environment of ICU needs to be strengthened, and nudity and disclosure of patients’ personal information should be avoided. HCPs should try to avoid unnecessary exposure and constantly reflect on the impact of their behaviors on patient privacy to develop new ways of protecting privacy. Attention must be given to patients’ responses toward privacy infringement, considering their psychological states and the need for conscious privacy protection. Key strategies for safeguarding patient privacy include enhancing HCPs’ privacy awareness through training and education and treating patients as unique individuals. Most importantly, understanding the privacy perspectives of HCPs and patients requires consideration of their traditional moral standpoints and cultural backgrounds.

ORCID iD

Yimei Zhang https://orcid.org/0009-0002-0553-6579

Data Availability Statement

Due to privacy and ethical limitations, the data in this study is not publicly available, but the data supporting research can be obtained from the corresponding author.*