Major themes
There existed both consensus and divergence in the understanding of PE for patient safety when we queried patients and nurses.
For patient safety, some of nursing staffs specifically described their understanding of patient safety through case examples, focusing on the prevention of adverse events regulated by the nursing department, such as falls, pressure ulcers, medication errors, misidentification, accidental tube removal, and so on. Some of them also mentioned unavoidable safety risks related to the patient’s disease or treatment, things like sudden death due to cardiovascular causes, surgical risks, which require the patient to be fully informed and to sign an informed consent form. In addition, some nursing staff pointed out the potential adverse outcomes due to the lack of self-care ability after patient discharge. Nursing staff particularly emphasized avoiding preventable physical harm to patients. In contrast, patients’ understanding of patient safety is more subjective. When talking about patient safety, they focus more on their personal feelings and experiences, such as comfort, pain relief, and sense of security.
N7: Patient safety? You mean things like preventing pressure ulcer, medication error, falling down? …Staffs in nursing department check frequently on adverse events so our colleagues will pay more attention on risks of these security incidents.
N2: For instance, if a person is at high risk of falling, I would certainly provide safety education to the him and his family to prevent such incidents, which is also part of patient safety management by hospital. And we also explain matters like adverse effect of medication or treatment, knowledge about their disease, and how to handle emergencies, such as patients with heart attacks, to the patients and their families, which are certainly part of patient safety. We educate patients and their families extensively, and if they can comply, for example, by taking medication on time and quitting smoking and alcohol, I believe that’s their active engagement.
P11: For matters like surgery, I feel it’s necessary to find a good hospital and a proficient professor to put my trust in.
P4: Anyway, by following the doctors’ and nurses’ instructions I feel like I’m recovering quite well. I do what they tell me to do, if they ask me to take medicine, I take it. There’s a (health education) video at the nurse station, and when I’m free, I go there to learn rehabilitation exercises by myself. I think I’m safe here.
Due to the difference in understanding and needs for patient safety, both nurses and patients think the key element in PE and PE competence is information sharing. However, their concerns are not same. Nurses prioritize the provision of information by patients during clinical practice, they focus more on patients’ conditions and treatment needs for a better caring plan as professionals, whereas patients emphasize their opportunities to receive more information from healthcare providers and concern more about their own rights which will enhance their sense of security. Clearly, the competence of providing, receiving and understanding information of patient is of paramount importance for both patient and nurses.
N1: Only the patient knows their true desires and needs, as well as the types of safety measures they prefer. Engagement is the process make patients have opportunity to provide us more information about themselves or their requirement.
P8: I believe engagement entails asking more questions, which is within my capacity and should be met by healthcare providers. I need to know all about myself.
Competence of taking PE as responsibility and right
Responsibility and right for security is one of the key concerns of PE for both sides. All nurses believe that patients should fulfill responsibilities and obligations to maintain their own safety in some case. Nursing professionals hold the view that patients must be fully informed about their conditions, treatment and caring plans as well as associated risks, and should be required to provide informed consent. In instances where the patient needs protective concealment, family members should also undertake the corresponding responsibility, acting as the patient’s proxy. Certain nursing personnel posit that a patient’s lack of awareness regarding risks does not foster greater trust in medical staff but rather escalates the potential for discord between doctor and patient. When patients’ expectations are too high and the risk is not fully known or expected, the responsibility will be fully imposed on medical staff. When there is an inevitable safety risk under normal circumstances, the huge gap between reality and expectation will cause patients and their families to fall into bad emotions, which will lead to unnecessary conflicts between doctors and patients.
N10: For example, for cancer chemotherapy patients, we now have a variety of chemotherapy programs, with each presenting its own set of pros and cons, of course. It is imperative for medical staff to conduct evaluations based on individual patient circumstances, thereby facilitating informed decision-making. Yet the unpredictability of cancer means that we cannot assure the effectiveness of any given program, it is a step by step, each program in the individual effect is different. Consequently, our role is limited to presenting potential outcomes alongside risk information, among which the possible risks and benefits also include treatment costs, so patients need to consider and make choices among them. At present, there are many clinical trial programs available for cancer patients, with risks and benefits still being evaluated during the trial phase, and some patients are not in good economic condition. Some patients, facing economic hardships, may opt to engage in these studies if they fulfill the trial’s eligibility criteria. Therefore, it is imperative that patients thoroughly read and sign the informed consent form acknowledging the risks, including those that are unknown and uncertain. It is essential for patients to possess a strong sense of responsibility.
At the same time, most nurses recognized that, even when adhering to established procedures in clinical practice, mistakes are inevitable, and leading to safety risks. Medical personnel have the responsibility to ensure the safety of patients, but they also hope that patients can consciously engage in a role of verification and oversight. Several nurses shared with us the safety incidents they have experienced or heard about in the course of their work that highlighting instances where PE averted serious adverse outcomes. They believe that the proper PE behavior of patients has great value and significance in promoting patient safety.
N3: Of course, we have to operate in accordance with the procedures in clinical practice, but it is really very difficult to ensure that we can ensure a complete absence of errors, isn’t it? No one is perfect. What we hope is that upon a patient’s arrival at the hospital, they retain a strong sense of personal responsibility, not to completely rely on the medical staff, but to cooperate with the medical staff to ensure their own safety, such as to assist the medical staff to verify information, monitoring the operation of medical staff, and ensuring adherence to hand hygiene protocols of the medical staff.
N5 Once, a student nurse went to hang an IV drip for a patient in the morning. Because the morning shift was very busy, she helped out with the task. Likely overwhelmed by the multitude of medications in her possession, an error occurred—the IV designated for patient 33 was mistakenly set up for patient 32. When I went to remove the needle for another patient in the room, before I even reached the bedside, the patient in bed 32 promptly noticed the information on the medication packaging and said, “Hey, this isn’t my name on it.” He immediately told me, and upon checking, I found that indeed one bag of medication had been mistakenly hung at bed 32. I quickly apologized to the patient and told him that his action was very good, as it prevented an accident.
Some nurses have reported that patients lacking a sense of responsibility, their engaging behaviors, such as providing false information, not only fail to promote safety, but may also escalate safety risks. A nurse shared her perspective, stating:
N8: Despite being instructed to fast and refrain from drinking before surgery, some patients still consume food in the mistaken belief that it poses no safety risks. In reality, this is extremely hazardous, especially when patients, despite being informed of the risks, persist in their actions and deceive caregivers by falsely claiming, for instance, that they have not eaten, therefore providing us with incorrect information that can severely mislead clinical judgment. Often, the truth comes to light only through our repeated questioning and observation of subtle clues. Such actions are very dangerous, and there have been many medical incidents have arisen as a consequence. Even though we have emphasized the dangers of such behavior to patients multiple times, they fail to take a responsible attitude towards their own safety and neglect their well-being.
All nurses advocate for patient involvement, believing that patients have the right to ensure their safety throughout medical treatment, a right that all healthcare professionals should respect. Even if patients do not possess adequate knowledge or competencies, and despite the potential for increased workload on medical staff, hospitals and healthcare providers should still encourage patients to fully engage in the maintenance of their own safety and provide them with sufficient support.
N3: PE is meaningful and deserves vigorous promotion. In fact, regardless of the level of literacy, we support it. It’s not just about the patients; clinical medical staff and hospital management must enhance their awareness, possess relevant knowledge, and take actions to optimize the entire medical environment.
N2: Even when we encounter challenges in communication with certain patients or find them troublesome amidst our busy work schedules, they still serve a crucial role in providing us with information on potential concerns. If a patient reports any discomfort, I would be more vigilant and cautious, and our observations would be more closely monitored. There might be times when it turns out to be false alarms, and it might increase the workload, but we are more relieved that the patient is unharmed and safe.
The majority of patients believe they should be responsible for their own safety, and as a result, some patients will engage in proactive behaviors. However, a minority of patients, despite agreeing that they are the primarily responsible for their own safety, remain disengaged from the medical process, under the assumption that hospitals are safe places and medical staffs will ensure their well-being. A small subset of patients dissents from the PE model, thinking that ensuring safety of patients should be the sole responsibility of medical professionals.
P5: I take my health and safety very seriously. The family and social education I’ve received, although I didn’t study medicine, still made me aware of the importance of health and safety.
P2: Most hospitals, especially those of higher levels, are generally safe environments. Of course, you are certainly responsible for your own safety, but within the hospital, it’s relatively safe. Doctors and nurses are readily available to address any issues, so there’s no need to worry too much.
P11: Since I’m hospitalized, I just need to follow the doctor’s advice; the doctor will take responsibility for my safety, so I don’t need to worry about it myself.
Competence of maintaining trust relationship with health personnels
All nurses and nursing managers assert that trust is an essential prerequisite for PE to yield positive outcomes. They believe that PE in their own safety is a collaborative process between the doctor and the patient, rather than a task to be completed by the patient alone. When asked about the troubles or adverse outcomes caused by incorrect PE and the underlying reasons, almost all nurses mentioned “distrust” in the process of summarizing.
N2 Ultimately, patients lack a medical background, and our criteria for judgment differ from theirs. Even if we have explained, we cannot fully make him understand the significance of treatments like dialysis. Therefore, popular traditional impressions and some incorrect views may still be a major factor in the patient’s decision-making. Hence, we will try our best to enhance the patient’s understanding but, more importantly, to earn their trust.
Trust plays a dual role in PE behaviors. In certain instance reported among nurses and patients, trust has a positive effect, promoting correct PE and fostering a good cooperative relationship between doctors and patients. In other cases, an over-reliance on medical staff due to trust is the primary cause of reduced PE levels.
N6: When patients trust medical staff, they can cooperate better. For example, after we have provided health education on ankle pump exercises, some patients are able to follow our instructions diligently, performing each movement accurately and fully, for the required duration, not only in the hospital but also consciously at home. They often give us feedback, and the results are very good. However, some patients may harbor some hostility towards medical staff for various reasons, such as cost or negative emotions brought on by illness. Others may only trust their professors and distrust other doctors and nurses. They may not listen to the precautions and health education we provide, resulting in poor cooperation.
P7: I think the doctors and nurses here are very good. I don’t understand medical professional knowledge, nor do I want to ask too many questions. However, I believe that following their advice is always the right thing to do, and cooperating with them is enough. I feel the outcome is very good.
Regardless of the role trust plays in PE in safety, it has led to better outcomes, with patients exhibiting higher compliance. Many nursing staff have indicated that gaining the trust of patients is a key step in ensuring patient safety in medical work. Some medical personnel believe that the mass media should play a role in this process.
M3: At present, some news outlets frequently report negative conflicts between doctors and patients, which has led to a decrease in trust among many patients towards medical staff. Especially in the current era of rampant self-media, if patients or their families are dissatisfied with the treatment outcomes or have other grievances, they may publicize online what they perceive as improperly conduct by doctors, nurses, or hospitals, which can sometimes be just misunderstandings. Under such public opinion circumstances, the doctor-patient relationship becomes even more strained, and the trust of patients in medical staff is greatly affected. However, in reality, the negative incidents publicized online are only a small minority. The vast majority of healthcare providers administer treatment for patients in compliance with established regulations and standards, always prioritizing the patients’ interests and life safety. I believe that the online public opinion environment needs to be improved, and the mass media should also promote more positive cases, help the public establish the correct safety concepts, and work together to create a harmonious doctor-patient environment.
Competence of making equal communication
To address the challenges in PE and foster correct and effective engagement, all nursing staff have identified communication as crucial. They believe that thorough communication with patients is the most effective approach. Through such communication, medical personnel can understand the patient’s concerns and needs, while patients can gain the information they require and be aware of their safety risks. Additionally, nursing staff have highlighted the importance of equal communication, where medical staff and patients must respect each other and collaborate to achieve health and safety objectives.
M2: If the relationship between medical staffs and patients is asymmetrical, or if communication is impeded, it may be difficult to reach a consensus with the patient on health management, and it may also be hard to achieve the purpose of our service. Although medical staff are more professional, the individual needs of patients vary. Therefore, there must be equal mutual communication between both parties, so that we can understand their needs, and they can understand the purpose and benefits of our recommendations. Only in this way can we achieve the goal of their health, which is also the goal of our service; otherwise, it is difficult. Moreover, I believe that only by respecting the patient’s decision-making rights, fully involving them, and allowing them to fully understand our practices can they better cooperate with our various treatments and nursing, and thus better serve the patient’s health.
Competence of accepting non-punitive safety culture
A safety culture that avoidspunitive measures is vital for both medical staff and patients. While all the nurses interviewed expressed their approval of patient involvement, some expressed concerns when discussing the supervisory role of patients. They worry that medical staff might be reluctant to involve patients in the process for fear that patients will discover their mistakes.
N7: Despite our rigorous compliance with legal and regulatory standards, errors can occasionally occur, particularly for novice medical personnel who may not have enough experience. The dissatisfaction and criticism from patients, even in the absence of adverse outcomes, can undermine the confidence of medical staff. To prevent accusations or complaints, some practitioners may opt to reduce the information they share with patients or limit their involvement in the process.
Additionally, patients have expressed analogous apprehensions, fearing that their perceived lack of competence might result in erroneous reports or misguided suggestions, which could provoke discontent from healthcare professionals.
P12: They are all very busy, and I don’t understand professional medical knowledge. They must have their reasons for doing things in a certain way. I might not be right, and I’m afraid that asking too many questions might make them think I’m a troublesome person.
Need of resource support
Need of human resources
Both patients and healthcare professionals have highlighted the issue of inadequate human resources, which impedes the advancement of patient involvement in clinical processes. Nursing staff, in particular, have shared their concerns about the additional workload associated with fostering PE, a burden that could potentially exacerbate tensions between healthcare providers and patients.
N8: Naturally, we endorse patient participation; however, it demands additional exertions from clinical staff. For instance, there is a need for more meticulous and targeted health education, coupled with positive promotion through mass media. Undoubtedly, there is a continuous need to resolve a variety of patient issues in the course of work. Current clinical tasks are already overwhelming, and medical staff can only take on these additional responsibilities at the expense of their own rest time, leading to excessively burdens and also challenges the maintenance of quality care. It is unrealistic to expect this degree of commitment from everyone; there is an urgent need for hospitals and departments to provide additional human resource support to alleviate the workload for each staff member.
N7 In our routine nursing practice, if we are not busy, we can address patient inquiries patiently. However, during extremely busy times, especially when I am interrupted during the administration of nursing treatments or medication preparation, it becomes quite troubling. These interruptions can easily lead to mistakes in my work and could potentially cause accidents. Yet, ignoring patients’ concerns can breed dissatisfaction, with some even lodging complaints. Moreover, when I am too busy to explain things thoroughly to patients due to lack of time and faced with a multitude of pending tasks, I can only briefly outline the essentials to patients, which may also lead to misunderstandings and can easily spark disputes.
Some patients have also complained that the busy work of medical staff prevents them from obtaining a comprehensive understanding of their own conditions. When patients seek for additional information from medical staff, they find it difficult to get support, and thus cannot engage effectively.
P 10: When I try to consult with the professor, I can never find him; his colleagues tell me he’s either engaged in surgery, attending to clinic patients, or in a meeting. The morning rounds are always rushed, and I can’t ask more questions.
Need of channels to provide accurate health information
Many nurses have pointed out that in today’s era of advanced artificial intelligence and the internet, the online spaces have become one of the primary sources for patients seeking information. The abundant information resources available online can serve as a valuable supplement to the busy clinical workload. However, given that most patients have not received formal medical education and lack the ability to discern accurate information, they are prone to being deceived by false information or misleading advertisements, which can lead to adverse outcomes.
N8: Actually, in promoting patient involvement, improving patients’ health literacy is essential, but it cannot be solely reliant on hospitals. After all, the time patients have for medical visits is limited, and our work is very busy. As an individual caregiver, I sometimes have to manage more than a dozen patients, and the time I can allocate for educating each patient is very limited. Patients are required to seek relevant information by themselves, but the online information is often cluttered. Ideally, medical professionals or organizations should establish their own media or public platforms to provide scientific health education to the general public.
A portion of elderly patients have expressed their frustration with the difficulty of discerning authentic from false information online. This has led them to refrain from seeking information through the internet and instead, they place their trust exclusively in the expertise and guidance provided by healthcare professionals.
P7: I’m hesitant to search online because I’m afraid of being deceived; there’s a lot of false information on the internet.