What patients and their families want to know before and after ICU tour for lung cancer surgery: a qualitative study

doi:10.21203/rs.3.rs-4930094/v1

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Research Article

What patients and their families want to know before and after ICU tour for lung cancer surgery: a qualitative study

https://doi.org/10.21203/rs.3.rs-4930094/v1

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Background: Information asymmetry between healthcare providers and patients leads to low treatment participation and compliance, low admission satisfaction, and medical disputes. To provide a comprehensive understanding of the information needs of patients who undergoing lung cancer surgery before entering the intensive care unit (ICU), as well as the information needs from their caregivers.

Methods:Under a qualitative study design, 27 lung cancer surgery patients and their family members in the Lung Cancer Center of West China Hospital of Sichuan University were selected by purposive sampling for semi-structured interviews. Content analysis was employed using NVivo12.0 software.

Results: By extracting the important nodes in the semi-structured interview, the information needs of patients with lung cancer surgery and their family members were divided into two first-level nodes, four second-level nodes, and 13 third-level nodes to construct the ICU pre-experience information demand model.

Conclusion:Patients undergoing lung cancer surgery and their families have limited access to ICU information, and medical personnel happen to be the main source of information support.

Implications: Based on the findings of this study, an ICU pre-experience model will beexplored and established based on the information needs of patients and their families during the peri-ICU period as the benchmark and the key nodes of patients' treatment in the ICU as the time axis to decrease the anxiety of patients and their families, reduce medical disputes, and bolster their satisfaction with ICU nursing work.

Reporting Method (if applicable):This study adhered the SRQR guidelines.

Patient or Public Contribution: Overall, 27 lung cancer patients and their family members were selected through purposive sampling.

family members

ICU pre-experience

information needs

lung cancer surgery

patients

qualitative study

According to the 2020 global cancer statistics, lung cancer is the second most common cancer worldwide and the leading cause of death among cancer patients, accounting for 18.0% of all cancer deaths (Ferlay et al., 2021). Lung cancer is a malignant tumor with the highest morbidity and mortality rates in China (Wu et al., 2021). Although there have been advances in chemotherapy, radiotherapy, targeted therapy, and immunotherapy, surgery remains the most important treatment for lung cancer. Patients undergoing lung cancer surgery must be transferred to the intensive care unit (ICU) because of the complexity of the surgery (Elsayed et al., 2022; Hoy et al., 2019). The ICU environment is closed due to the stern requirements concerning hospital infection, and patients and their families have limited access to ICU information, which cannot satisfy their information needs such as the environment, treatment, care, and cost in the ICU. For patients who directly enter the ICU after surgery, a lack of understanding of the condition and treatment methods will lead to the occurrence of a series of adverse events. Studies have found that the unmet information needs of patients lead to low treatment participation, compliance, and admission satisfaction (Carr et al., 2019; Maung et al., 2015). Compared to patients in the ICU, family members who wait outside the ICU experience multiple pressures, such as isolation from the patient, expensive treatment costs, long waiting times, and the fear of losing family members at any time. Unhealthy emotions, such as anxiety and tension, further lead to medical disputes (Alsharari, 2019; Beesley et al., 2018; JanardhanIyengar, 2019). Hence, providing patients and their families with effective information about the post-operative transition to the ICU can improve patient compliance, reduce complications, improve the satisfaction and sense of acquisition of patients and their families, and reduce medical disputes.

Currently, the main way for patients and their families to obtain ICU information before surgery is through pre-entry education provided by ICU medical staff, such as oral explanations (Mahoney et al., 2018), multimedia education systems (Steves & Scafide, 2021), and artificial intelligence (AI) experience (Parkhomenko et al., 2019). However, there are some problems with pre-entry education in ICUs in China and abroad. For instance, the content of education is mainly based on the professional knowledge and clinical experience of medical staff, and the patients and their families are not involved, resulting in insufficient information, and the effect of the education is not good as well. Some medical staff only inform patients about the good results of the surgery, which is inconsistent with the patient’s actual surgical results and the recovery process, causing the patients and their families to be disappointed (Carr et al., 2019; Renovanz et al., 2019; Taylor et al., 2017). Thus, to ensure that the information needs of patients and their families are effectively met, it is imperative to improve the education quality and provide standardized and professional education content for patients and their families.

This study aims to propose a new concept: the ICU pre-experience mode. This model is a kind of pre-ICU education based on the information needs of patients and their families during the peri-ICU period as the benchmark and the key nodes of patients’ treatment in ICU as the time axis. Furthermore, this model was conducted on the day before surgery for patients who were scheduled to be admitted to the ICU after surgery to provide them with information about the treatment during the transition to the ICU. Pre-operative ICU experience was conducted one day before surgery for patients and their families who were scheduled to be admitted to the ICU after surgery to provide them with information about the treatment during the transition in the ICU.

2.1 Study setting

In this study, the Lung Cancer Center of West China Hospital of Sichuan University was chosen as the survey site. The center comprises senior clinical experts in thoracic surgery, oncology, radiotherapy, respiratory medicine, pathology, imaging, and oncology radiation physics technology in one department to provide comprehensive medical services for patients with lung cancer. This center is the largest lung cancer center in western China and treats several lung cancer patients from the whole country and the world annually. The center currently has 120 beds. In 2021, the number of lung cancer patients was 7729, 1670 operations were performed, and 1472 patients were admitted to the ICU after surgery.

2.2 Study participants

Using the phenomenological research method, patients who underwent lung cancer surgery at the Lung Cancer Center of West China Hospital of Sichuan University from October to December 2021 were selected, together with their family members, as the research subjects via purposive sampling. The inclusion criteria were as follows: ① clear diagnosis of lung cancer and surgical treatment; ② direct admission to the ICU after surgery; ③ age over 18 years; ④ stable condition, emotional stability, good mental condition, and ability to understand and communicate with the interviewer; ⑤ individuals with independent behavioral ability and willingness to accept this study. Exclusion criteria were patients with mental illness, impaired consciousness, language impairment, or deafness. The sample size of the interviews in this study was determined according to information “saturation,” that is, researchers did not conduct new interviews when no new nodes appeared in the data analysis (Wan et al., 2019).

2.3 Data collection

By reading a large number of domestic and foreign studies (Fuzesi et al., 2019; Groller, 2017; Lee et al., 2020; McNair et al., 2016; Poland et al., 2017; Wetzig & Mitchell, 2017). The interview outlines patients and their families before and after entering the ICU. The outlines of the post-operative patient interviews included five basic interview outlines and 18 supplementary outlines. The interview outlines for post-operative family members, pre-operative patients, and pre-operative family members included three basic interview outlines and some supplementary outlines. Moreover, three post-operative and three pre-operative patients, with their families, were selected for the pre-interview. The repeated questions, untargeted questions, and questions with weak relevance to the research purpose were deleted, and the questions that were ambiguous or difficult to understand and answer were revised. The interview was performed around an outline, and a detailed outline is provided in the Appendix.

This study used a semi-structured in-depth interview method. According to the interview outline, the interviewers administered in-depth interviews with 27 respondents, including six post-operative patients, seven post-operative family members, six pre-operative patients, and eight pre-operative family members. Interviews were conducted during periods when patients were conscious, in a good mental state, non-treatment, and non-eating, and when family members were emotionally stable and free. The interviews lasted 10–20 minutes, and the setting was quiet and without noise. The interviews were conducted by experienced nurses and paired with a recorder. Before the formal interview, the interviewees were identified, the background and purpose of this study were briefly introduced, and confidentiality was guaranteed. After obtaining the support of the respondents and signing the informed consent form, the entire interview process was recorded in two ways: live recording and transcription. After the interview, transcript data were sent to the respondents for verification. During the interview, the recorder was also attentive to changes in the respondents’ non-verbal movements, such as facial expression, emotional state, and body posture, to make a good record. When processing the interview materials, respondents were anonymized and replaced with sequential numbers of post-operative patients (1–6), post-operative family members (1–7), pre-operative patients (1–6), and pre-operative family members (1–8). After the interview, two researchers were required to independently complete the word text conversion of the interview transcript and the audio recording within four hours and use az, z’ as the Microsoft Word file name of each interview text data, for a total of 27 copies.

2.4 Data analysis

This study utilized NVivo12.0 for data collation and analysis. NVivo was used as a qualitative analysis software, which can help researchers complete research with stable quality and improve work efficiency and transparency. Scholars have widely employed it in qualitative research.

First, a new project named “information needs analysis of ICU pre-experience of lung cancer surgery patients and their family members” was created in NVivo12.0, and a source file of the project named “Interview Data” was created to store the interview data of the respondents in Microsoft Word format. Afterward, the interview data were coded (i.e., the interview data were read, decomposed, differentiated, and given concepts word by word), and the reference points with the same significance were set to form nodes. The content of each interview data was coded to existing nodes or a new node was established. When the post-operative patient interview reached the sixth person, the post-operative family interview reached the seventh person, the pre-operative patient interview reached the sixth person, and the post-operative family interview reached the eighth person. The researchers found no new coding content. The interviews were then continued with three respondents to validate whether the data had reached saturation, and the findings signified that no new content appeared in the subsequent interviews, indicating that the data had reached saturation and this study had some credibility and validity. To ensure the consistency and accuracy of coding, researchers reviewed and conducted group discussions on the nodes with differences in coding between the two interview data, and finally coded them to the node closest to this study’s topic.

2.5 Quality control

The researchers in this study were trained in qualitative research and were able to master the theoretical knowledge and methods of qualitative research. In this study, the interviews were transcribed by two panelists using the pooling method, and the transcripts were checked by other panelists to ensure the findings’ authenticity. The researchers continued to reflect on their research process. After the data analysis, the recording of the interview was listened to, and the outcomes of the final analysis were returned to the respondents to verify the authenticity of the content.

2.6 Patient or public participation

This study was approved by the Ethics Committee of West China Hospital at Sichuan University, and informed consent was obtained from all study participants.

3.1 Respondent characteristics

In total, 27 respondents were selected for this study, including 12 patients and 15 family members. There were 15 male and 12 female respondents, the average age of the respondents was 47.4 years old, and respondents with a Bachelor’s degree or above accounted for 40.7% of the sample. In terms of occupation, the respondents were farmers, and the distribution of other occupation types was relatively equal. The respondents were divided into three types: inside Chengdu, Sichuan Province outside Chengdu, and outside Sichuan Province. The number of respondents living in Chengdu was the largest, accounting for 70.3% of the sample. Specific information is presented in Table 1.

Table 1

Characteristics of the survey subjects (N = 27).
Characteristics	N (%)
Identity
Patient	12(44.4)
Family members	15(55.6)
Gender
Male	15(55.6)
Female	12(44.4)
Age
Average	47.4
Range	29–64
Education level
Elementary school and below	1(3.7)
Junior high school	7(25.9)
High school (secondary school)	3(11.1)
College	5(18.5)
Bachelor’s degree and above	11(40.7)
Occupation
Employees of government agencies and institutions	4(14.8)
Enterprise employees	8(29.6)
Farmer	2(7.4)
Other	7(25.9)
Retired	6(22.2)
Place of residence
Chengdu	19(70.3)
Sichuan Province outside Chengdu	4(14.8)
Outside Sichuan Province	4(14.8)

3.2 Overall information needs

Researchers identified four levels of nodes through three stages: open coding, associative coding, and selective coding, including two first-level nodes, four second-level nodes, and 13 third-level nodes. The logical relationship between different nodes can be reflected by the logical relationship model established by the new project diagram function in the NVivo software. By adding the nodes at all levels that had been coded in this study to the model, an information demand model for ICU pre-experience of lung cancer surgery patients and their families was formed, as illustrated in Fig. 1.

From the perspective of overall information demand, the most relevant information was the process of patients being transferred to and out of the ICU, signing-related matters, and ICU attributes, followed by tracheal intubation and extubation, pain management, and sputum suction, as shown in the word cloud chart (Fig. 2). In NVivo, content with the same meaning is encoded as the same node and different nodes constitute different reference points. Utilizing the built-in hierarchical diagram item function of NVivo, a node hierarchical diagram can be generated that can directly reflect the proportion difference in all nodes through the area difference of each node. The more times it is mentioned, the greater the area it occupies. An overall hierarchy diagram of this study is displayed in Fig. 3. The need of patients for related information is greater than that of their family members. Moreover, patients’ needs for related information after admission to the ICU are more concerning, while family members’ needs for related information before admission to the ICU are more pressing.

3.3 Patient-related information needs

In terms of patient-related information needs, the area occupied by the information after entering the ICU was greater than the area occupied by the information before entering the ICU (refer to Fig. 4). Therefore, relevant information after entry into the ICU was more concerning. Due to the closed management of the ICU, the outside world lacks a certain understanding of the ICU. Therefore, this study found that the information needs before admission to the ICU were mainly the specificity of the ICU, including ICU attributes (definition, treatment object, etc.), environmental noise in the ICU, light interference in the ICU, and common equipment in the ICU (treatment bed, monitoring and rescue equipment, etc.). For example, some interviewed patients believed that the ICU was “a department where people were critically ill, seriously ill, and in need of rescue.” Some patients’ interviews highlighted that due to the 24-hour continuous operation of various monitoring and rescue equipment in the ICU or the sound of alarms, as well as 24-hour lighting, sleep quality was affected to some extent.

After entering the ICU, patients and their families wanted to know about the four dimensions, including patient care, perception, transfer process, and psychological state, of which nursing-related information accounted for the largest proportion and attracted the most attention. Nursing-related information mainly refers to the post-operative transition period of ICU patients. The respondents mentioned a series of nursing measures, including tracheal intubation and extubation, eating, pain management, and assistance and encouragement of cough, sputum, and binding measures. Endotracheal intubation refers to the insertion of a special endotracheal tube through the mouth or nasal cavity into the trachea or bronchus through the glottis to provide ventilation and oxygen for patients under general anesthesia or those without spontaneous breathing. The tracheal tube was removed after the patient had completely recovered from spontaneous breathing. As lung cancer patients need to fast for eight hours before surgery, what and when to eat after entering the ICU has received more attention. Pain management refers to taking measures to help patients control post-operative pain, such as providing patients with appropriate painkillers and guiding them to correctly use analgesia pumps. Assisting and encouraging cough and expectoration refer to encouraging and assisting patients with cough and expectoration for three–five days after lung cancer surgery. The purpose is to purify the respiratory tract, facilitate breathing, and reduce complications such as pneumonia and atelectasis. The constraint measure was a nursing method that was not understood and accepted by most patients and their families, and its main objective was to prevent accidents such as patients falling from bed. Perception mainly refers to a series of sensations experienced during ICU treatment such as pain, insomnia, and discomfort. The transfer process from the ICU also garnered more attention from patients and their families, including the transfer time and waiting location for their families. The psychological state refers to some psychological feelings and emotions of patients during the ICU stay such as nervousness and anxiety. Table 2 summarizes the analysis of patient information needs.

Table 2

Summary of data analysis results of patients and their families before admission into the ICU.
Node	Number of Node Material Sources	List of Material Sources	Number of Coding Reference Points	Examples of Reference Points
ICU Attributes (A1-1-1)	13	nz, a’	17	P: In other words, it may be an emergency treatment, which may be important for the maintenance of some nursing care, or for emergency treatment, which may be the case in the ICU.
Light Interference(A1-1-2)	2	a, r	2	P: Oh, I didn’t sleep well that night. I was nervous, and then the light was on .
Environmental Noise (A1-1-3)	3	a、e、r	3	P: There was still a slight impact. When I was sleeping, I did not know what the instrument was. The sound was relatively loud, and I did not know whether it was a ventilator.
Common Equipment (A1-1-4)	1	b	1	P: I felt that the bed was also very comfortable to sleep in. N: Did you know why? It was because the bed underneath you was an air bed.
Binding Measures (B1-1-1)	8	a, b, d, e, h, oq	10	P: Now, could you please explain why you want to tie it up? Is it uncontrollable?
Sputum Suction (B1-1-2)	4	a, b, d, s	5	P: What if I still could not cough? N: Then, we would consider sputum suction by bronchoscopy, which was a problem of sputum suction.
Pain Management(B1-1-3)	12	a, d, f, j, l, n, ps, y	13	P: What if some people were sensitive to pain? I saw the patient who came back from the same ward yesterday. I was watching with pain and sweating.
Tracheal Intubation and Extubation (B1-1-4)	10	af, j, q, r, s	17	P: I thought it was necessary to tell me in advance that I was out of surgery and there was a tube in my throat.
Water Deprivation (B1-1-5)	2	b, f	2	P: My mouth was dry, so I really wanted to drink water.
Fasting (B1-1-6)	4	c, l, s, y	4	P: After the surgery, I could not eat, right?
Eating (B1-1-7)	5	e, k, m, o, s	8	P: Then, I wanted to know when I could drink water.
Drinking (B1-1-8)	14	c, d, f, h, jn, p, s, v, y, a'	16	P: I wanted to know that she was in the ICU, and we could not go in. What would she eat?
Breathe (B1-1-9)	1	e	1	P: You could also teach us how to breathe.
Assist and Encourage Cough and Sputum (B1-1-10)	7	a, c, e, f, n, r, s	11	P: The nurse said that I was coughing sputum in the wrong way, but I also did not know how to cough correctly.
Bedside Chest X-ray (B1-1-11)	5	b, c, d, h, j	5	P: What was the chest X-ray?
Passive Turning (B1-1-12)	1	e	1	P: You told me to slightly move my position, like lifting my butt.
Suffocation (B1-2-1)	1	e	1	P: Yes, there was a sense of suffocation, so you can talk about it in advance to let patients be psychologically prepared.
Language Barrier (B1-2-2)	3	a, b, e	3	P: I had been knocking on the table and could not speak.
Postural Discomfort (B1-2-3)	3	b, e, q	3	P: The feeling that I wanted to move but could not.
Pain (B1-2-4)	4	a, c, d, f	6	P: After the nurse changed my medicine, I was in so much pain. The pain pump did not work. I was sweating in pain and did not dare to move.
Sleeplessness (B1-2-5)	5	a, c, e, p, r	5	P: I was also very anxious. I was afraid that I would not be able to sleep.
Thirst (B1-2-6)	3	bd	3	P: I was thirsty, and my mouth was very dry.
Breathlessness (B1-2-7)	1	e	3	P: I always felt very uncomfortable. It was very difficult to breathe as the supply was very fast. There was no way to breathe spontaneously.
TransferingProcess (B1-3)	15	c, g, j, mo, r, st, vz, a'	20	P: I just wanted to ask about the time of transferring to the public ward, and would you tell my family members to come in advance?
Psychological State (B1-4)	3	a, b, e	5	P: Oh, no wonder, I was so nervous at that time.

3.4 Family members-related information needs

A hierarchical diagram of family-related information needs is depicted in Fig. 5. It can be seen that the information related to family members before admission to the ICU mainly consisted of four points: admission process, signing-related matters, material pre-paration, and cost. The admission process included the time when patients were transferred to the ICU, the waiting place of family members, and so on. Signing-related matters referred to the fact that many documents had to be signed by family members when patients entered the ICU after surgery, and family members needed to know the content and number of signed items. Due to the particularity of the ICU, the family members could not enter the ward and were separated from the patient. Hence, the most important information for the family members of the patient after entering the ICU was the patient’s surgical results, the patient’s treatment progress, the visitation system, and other special precautions. The progress of the treatment includes the post-operative recovery and physical condition of the patient. The visitation system includes the availability of visits, time, and method of visits. Table 2 summarizes the analysis of family information needs. (Table 3)

Table 3

Summary of the analysis results of the information needs of patients and their families after entering the ICU.
Node	Number of Node Material Sources	List of Material Sources	Number of Coding Reference Points	Examples of Reference Points
Admission Process (A2-1)	14	g, k, l, ow, z, a'	23	F: I also wanted to know, what should I do when he comes out later? Would anyone inform me?
Material Preparation (A2-2)	17	gk, l, np, rz, a'	18	F: I needed to take the towels, wet wipes, water cups, and a packet of paper, as well as the bowl, right?
Signing Related Matters (A2-3)	17	gi, kn, p, rw, y, z, a'	22	F: You need to inform family members about signing-related matters before the surgery so that they can be prepared.
Cost (A2-4)	1	n	1	F: Probably not that costly.
Surgical Results (B2-1)	8	h, i, k, l, m, w, x, y	14	F: In fact, all we cared about was the outcome of the surgery.
Treatment Progress (B2-2)	7	g, h, i, j, m, t	8	F: I definitely could not care about the equipment in the hospital. My concern was whether he was in a good condition.
Visitation System (B2-3)	2	s, t	2	F: We could not see him after entering the ICU, right?
Other Special Considerations (B2-4)	1	w	1	F: Where should I wait?

4.1 Main findings

In this qualitative study, 27 lung cancer surgery patients and their family members were interviewed to investigate their information needs for the ICU, and the following main conclusions were drawn. First, we found that the patient-related information needs were mainly concentrated on a series of nursing measures and perceptions after entering the ICU. These include restraint measures, tracheal intubation, extubation, pain, and insomnia. Second, we noted that family members paid less attention to their own information needs and mainly paid attention to a series of patient-related matters, such as the transfer process before ICU admission, preparation of materials, surgical conditions, and treatment progress. Third, we found that due to the particularity of the ICU, patients and their family members were both concerned about the information about patients’ eating, drinking, transfer processes, and visitation systems.

4.2 Patient-related information needs

Lu et al. (2021) believed that stress is a nonspecific reaction of individuals to external stimuli. Obbarius et al.(2021) believed that stress is caused by changes in an individual’s environment. When the environmental change exceeds the individual’s ability to deal with it, it would lead to an imbalance in the individual’s physiology and psychology, and changes in emotional and behavioral ability would occur. Unlike general wards, ICUs have a strict cleanliness level system. Simultaneously, to reduce cross-infection, it is relatively isolated from the outside world and is an independent treatment unit. Thus, the outside world has a limited understanding of ICUs. Foreign studies on ICU environmental stressors revealed that the stressors affecting awake patients in the ICU included a closed and unfamiliar environment in the ICU, busy medical staff, harsh machinery sounds, and strict visitation systems (Gezginci et al., 2022; Krampe et al., 2021). In the 27 interviews, the main information needs of patients before ICU admission were the understanding of ICU characteristics, including ICU attributes, environmental noise, light interference, and commonly used equipment, which is consistent with foreign studies. Compared to the general ward, work in the ICU is heavy and intense. The physical condition of the patient, the effectiveness of the treatment plan, and the operation of the instrument are the focus of the medical staff’s attention, but there is a lack of humanistic exchange and emotional communication. It is suggested that the ICU medical staff should not ignore the introduction of the particularity of the department when carrying out ICU pre-experience for lung cancer patients and their families.

The information that patients wanted to know the most during their ICU stay was the means of receiving care and perception, which was also consistent with the results of a study from the United Kingdom (Hale et al., 2019). Studies have shown that it is critical to provide the information needed by patients in cancer care. Patients with better knowledge of the severity of the disease, changes in the condition, and treatment methods can better cope with and manage the disease and have a better quality of life, together with less anxiety and depression (Krampe et al., 2021; Mahoney et al., 2018). Additionally, owing to the particularity of lung cancer surgery, patients cannot effectively cough spontaneously after surgery, and sputum retention leads to airway obstruction, atelectasis, and respiratory insufficiency. Hence, patients after lung cancer surgery must understand and know respiratory nursing intervention methods in advance, such as sputum suction, encouragement, and auxiliary cough and expectoration. It is suggested that the ICU medical staff should actively provide patients with professional knowledge and education about the disease and post-operative care when carrying out ICU pre-experience for lung cancer patients and their families to ensure patients’ full understanding and cooperation, thereby improving patient treatment compliance and avoiding unplanned extubation and other emergencies.

4.3 Information needs of family members

Patients admitted to the ICU were critically ill and could not make decisions. Therefore, their family members were spokespersons and medical decision-makers (Omari, 2009). Family needs refer to the overall needs of family members for the patient’s condition and treatment, as well as their own physical and mental support needs during the patient’s illness and treatment (Padilla Fortunatti, 2014). Family-related information needs were mainly focused on the patient, including the patient’s transfer process before entering the ICU, preparation of the materials, surgical condition, and treatment schedule. A study of pediatric cancer patients showed that information on diagnosis, treatment, and complications could reduce parental distress, create a normal family environment, reduce anxiety, and increase parental control (Motlagh et al., 2019). Another study on the family members of patients with amyotrophic lateral sclerosis (ALS) also found that an understanding of disease management and nursing methods could reduce the psychological burden on family members and improve their quality of life (Poppe et al., 2020). Therefore, medical staff should inform family members about the patient’s condition promptly to dispel the family’s doubts and uncertainties so that the family members have more confidence in the treatment and improve the family’s negative emotions.

Other information needs related to family members mainly included signatures and fees. As there are many documents to be signed by family members of patients admitted to the ICU after surgery, including doctor-patient communication forms, nurse-patient communication forms, nursing supplies handover forms, etc., most family members often leave the ward after signing a communication form or show impatience due to excessive signing because they are worried about the patients. Thus, medical staff should inform family members of all signature items in advance to avoid missing signatures, which can improve the satisfaction of family members. The cost of ICU treatment is much higher than that of general wards; however, in this study, patients and their families were not concerned about the cost. On the one hand, it may be that because the survey site of this study was the Lung Cancer Center of West China Hospital, patients and their families who chose to have surgery in this center had certain psychological expectations about the cost, and the best treatment for patients was the primary purpose. On the other hand, it may be because the family members had already understood through early health education that the patient was admitted to the ICU for further observation after surgery, and the stay time would not be too long, so they did not worry about the cost.

4.4 Implications for clinical and management

In 2021, the Global Patient Safety Action Plan 2021–2030, adopted by the World Health Assembly, regarded patients and their families as partners in safe medical care and proposed that patients and their families were participants rather than recipients of medical and health services (Hughes, 2021). Patient-centered nursing is a kind of nursing method that considers patients’ perspectives on their physiological, safety, self-esteem, and other needs, and takes into account patients’ personal decisions, preferences, and goals. Previous studies have shown that this nursing method can improve patient satisfaction and reduce medical costs (Constand et al., 2014). For example, Hwang et al. (2019) found that improving nurses’ patient-centered care ability and creating a good care atmosphere were crucial for facilitating patient participation in treatment and care.

Traditional face-to-face health education before ICU admission mainly relies on the work experience, personal ability, and subjective cognition of the medical staff; thus, the education content is abstract, incomplete, and non-standard, and the interview effect is unsatisfactory (Wellburn et al., 2019). The educational content from the perspective of the medical staff often leads to poor communication between patients and their families and medical staff and increases medical disputes. Therefore, it is no longer suitable for ICUs, which are special environments with closed information. Therefore, to solve the problem of information asymmetry between doctors and patients in the ICU, based on the results of this study, an ICU pre-experience mode was explored and established based on the information needs of patients and their families during the peri-ICU period as the reference point and the key nodes of patients’ treatment in the ICU as the time axis. Providing them with information about the transition treatment of patients into the ICU on a pre-operative day before surgery can improve the treatment compliance of patients, reduce complications, improve the satisfaction and sense of gain of patients and their families, and reduce medical disputes.

4.5 Study strengths and limitations

To our knowledge, this study is the first to assess the health education information needs of lung cancer surgery patients and their family members before ICU admission and investigate the ICU information needs of patients and their family members at the same time. It also systematically explored the information needs of patients and their family members during the entire ICU period, which expands the content and scope of ICU health education. This study provides a basis for further exploration and establishment of an ICU pre-experience model.

This study has several limitations. First, the interviews were conducted in only one hospital, so the promotion of the research results has certain limitations. However, the Lung Cancer Center of West China Hospital is the largest lung cancer center in western China and accepts patients from all regions of China; thus, the sample is representative to some extent. Second, there was recall bias among the respondents, which may be due to information bias. However, the interviewers in this study were ICU specialist nurses with extensive work and scientific research experience, who helped the interviewees with associative recall during the interview. Besides, when the interview content was sorted and analyzed, it was reviewed using the joint method to ensure the accuracy of the interview content. Third, due to the poor post-operative state of some patients and the replacement of family members, this study did not conduct continuous interviews with the same respondents before and after surgery. In the future, this study will expand the scope of research, increase the number of respondents, and construct a manual for ICU lung cancer information needs based on the research results and apply it to the ICU pre-experience.

In hospitals, medical staff members satisfy the information needs of patients and their families. This study investigated the information needs of 27 lung cancer surgery patients and their family members in the ICU pre-experience through qualitative research and constructed an information needs hierarchy diagram and model. Overall, the information needs of patients were greater than those of their family members. In the information needs of patients, nursing-related information after ICU admission, such as tracheal intubation and extubation, eating, pain management, etc., were of the greatest concern for the patients and their family members. The family members also wanted to know the process of transferring to the ICU and signing-related matters before the ICU admission.

• Ethics approval and consent to participate

This study was approved by the West China Hospital Ethics Committee.

• Consent for publication

All atuhors have read the manuscript and agreed to publish it.

• Availability of data and materials

Data was only available with request.

• Competing Interests

No competing interests.

• Funding

This study was funded by West China Nursing Discipline Development Special Fund Project, Sichuan University.

• Authors' contributions

Chen Dihong and Tao Wenjuan proposed the research topic and conceived the research design; Peng Tingting, Fan Yaxu, Yuan Lei, and Liu Yan conducted the actual investigation, research, and experimental data collection and analysis; Chen Dihong, Diao Li, and Yang Qianxue wrote the first draft of the article; Tian Yongming and Tao Wenjuan reviewed and revised the paper. All authors have read and approved the final version of the manuscript.

• Acknowledgements

We would like to thank all medical staff, patients and their families who participated in this study.

Ferlay, J., Colombet, M., Soerjomataram, I., Parkin, D. M., Piñeros, M., Znaor, A., & Bray, F. (2021). Cancer statistics for the year 2020: An overview. International journal of cancer, 10.1002/ijc.33588. Advance online publication.
Wu, F., Wang, L., & Zhou, C. (2021). Lung cancer in China: current and prospect. Current opinion in oncology, 33(1), 40–46.
Hoy, H., Lynch, T., & Beck, M. (2019). Surgical Treatment of Lung Cancer. Critical care nursing clinics of North America, 31(3), 303–313.
Elsayed, H. H. , Ahmed, M. H. , Ghanam, M. E. , Hikal, T. , Abdel-Gayed, M. , & Moharram, A. A. . (2022). Patients after lung resection heading to the high-dependency unit: a cost-effectiveness study for managing lung cancer patients. The Cardiothoracic Surgeon, 30(1).
Maung, A. A., Toevs, C. C., Kayser, J. B., & Kaplan, L. J. (2015). Conflict management teams in the intensive care unit: A concise definitive review. The journal of trauma and acute care surgery, 79(2), 314–320.
Carr, T. L., Groot, G., Cochran, D., & Holtslander, L. (2019). Patient Information Needs and Breast Reconstruction After Mastectomy: A Qualitative Meta-Synthesis. Cancer nursing, 42(3), 229–241.
Beesley, S. J., Hopkins, R. O., Holt-Lunstad, J., Wilson, E. L., Butler, J., Kuttler, K. G., Orme, J., Brown, S. M., & Hirshberg, E. L. (2018). Acute Physiologic Stress and Subsequent Anxiety Among Family Members of ICU Patients. Critical care medicine, 46(2), 229–235.
Alsharari A. F. (2019). The needs of family members of patients admitted to the intensive care unit. Patient preference and adherence, 13, 465–473.
JanardhanIyengar, S. M., Srinivasan, R., Venkateshmurthy, B. M., Katari, Y., & Hiremathada, S. (2019). Family Satisfaction in a Medical College Multidisciplinary Intensive Care Unit (ICU)-How Can We Improve?. Indian journal of critical care medicine : peer-reviewed, official publication of Indian Society of Critical Care Medicine, 23(2), 83–88.
Mahoney, S. T., Tawfik-Sexton, D., Strassle, P. D., Farrell, T. M., & Duke, M. C. (2018). Effects of Education and Health Literacy on Postoperative Hospital Visits in Bariatric Surgery. Journal of laparoendoscopic & advanced surgical techniques. Part A, 28(9), 1100–1104.
Steves, S. L., & Scafide, K. N. (2021). Multimedia in preoperative patient education for adults undergoing cancer surgery: A systematic review. European journal of oncology nursing : the official journal of European Oncology Nursing Society, 52, 101981.
Parkhomenko, E., O'Leary, M., Safiullah, S., Walia, S., Owyong, M., Lin, C., James, R., Okhunov, Z., Patel, R. M., Kaler, K. S., Landman, J., & Clayman, R. (2019). Pilot Assessment of Immersive Virtual Reality Renal Models as an Educational and Preoperative Planning Tool for Percutaneous Nephrolithotomy. Journal of endourology, 33(4), 283–288.
Taylor, L. J., Rathouz, P. J., Berlin, A., Brasel, K. J., Mosenthal, A. C., Finlayson, E., Cooper, Z., Steffens, N. M., Jacobson, N., Buffington, A., Tucholka, J. L., Zhao, Q., & Schwarze, M. L. (2017). Navigating high-risk surgery: protocol for a multisite, stepped wedge, cluster-randomised trial of a question prompt list intervention to empower older adults to ask questions that inform treatment decisions. BMJ open, 7(5), e014002.
Renovanz, M., Haaf, J., Nesbigall, R., Gutenberg, A., Laubach, W., Ringel, F., & Fischbeck, S. (2019). Information needs of patients in spine surgery: development of a question prompt list to guide informed consent consultations. The spine journal : official journal of the North American Spine Society, 19(3), 523–531.
Wan, Z., Lai, Q., Zhou, Y., Chen, L., & Tu, B. (2019). Partial aneurysmectomy for treatment of autologous hemodialysis fistula aneurysm is safe and effective. Journal of vascular surgery, 70(2), 547–553.
Fuzesi, S., Becetti, K., Klassen, A. F., Gemignani, M. L., & Pusic, A. L. (2019). Expectations of breast-conserving therapy: a qualitative study. Journal of patient-reported outcomes, 3(1), 73.
McNair, A. G. K., MacKichan, F., Donovan, J. L., Brookes, S. T., Avery, K. N. L., Griffin, S. M., Crosby, T., & Blazeby, J. M. (2016). What surgeons tell patients and what patients want to know before major cancer surgery: a qualitative study. BMC cancer, 16, 258.
Poland, F., Spalding, N., Gregory, S., McCulloch, J., Sargen, K., & Vicary, P. (2017). Developing patient education to enhance recovery after colorectal surgery through action research: a qualitative study. BMJ open, 7(6), e013498.
Groller K. D. (2017). Systematic review of patient education practices in weight loss surgery. Surgery for obesity and related diseases : official journal of the American Society for Bariatric Surgery, 13(6), 1072–1085.
Lee, J. Y., Jang, Y., Kim, S., & Hyung, W. J. (2020). Uncertainty and unmet care needs before and after surgery in patients with gastric cancer: A survey study. Nursing & health sciences, 22(2), 427–435.
Wetzig, K., & Mitchell, M. (2017). The needs of families of ICU trauma patients: an integrative review. Intensive & critical care nursing, 41, 63–70.
Lu, S., Wei, F., & Li, G. (2021). The evolution of the concept of stress and the framework of the stress system. Cell stress, 5(6), 76–85.
Obbarius, N., Fischer, F., Liegl, G., Obbarius, A., & Rose, M. (2021). A Modified Version of the Transactional Stress Concept According to Lazarus and Folkman Was Confirmed in a Psychosomatic Inpatient Sample. Frontiers in psychology, 12, 584333.
Gezginci, E., Goktas, S., & Orhan, B. N. (2022). The effects of environmental stressors in intensive care unit on anxiety and depression. Nursing in critical care, 27(1), 113–119.
Krampe, H., Denke, C., Gülden, J., Mauersberger, V. M., Ehlen, L., Schönthaler, E., Wunderlich, M. M., Lütz, A., Balzer, F., Weiss, B., & Spies, C. D. (2021). Perceived Severity of Stressors in the Intensive Care Unit: A Systematic Review and Semi-Quantitative Analysis of the Literature on the Perspectives of Patients, Health Care Providers and Relatives. Journal of clinical medicine, 10(17), 3928.
Hale, A. J., Ricotta, D. N., Freed, J., Smith, C. C., & Huang, G. C. (2019). Adapting Maslow's Hierarchy of Needs as a Framework for Resident Wellness. Teaching and learning in medicine, 31(1), 109–118.
Krampe, H., Denke, C., Gülden, J., Mauersberger, V. M., Ehlen, L., Schönthaler, E., Wunderlich, M. M., Lütz, A., Balzer, F., Weiss, B., & Spies, C. D. (2021). Perceived Severity of Stressors in the Intensive Care Unit: A Systematic Review and Semi-Quantitative Analysis of the Literature on the Perspectives of Patients, Health Care Providers and Relatives. Journal of clinical medicine, 10(17), 3928.
Mahoney, S. T., Tawfik-Sexton, D., Strassle, P. D., Farrell, T. M., & Duke, M. C. (2018). Effects of Education and Health Literacy on Postoperative Hospital Visits in Bariatric Surgery. Journal of laparoendoscopic & advanced surgical techniques. Part A, 28(9), 1100–1104.
Omari F. H. (2009). Perceived and unmet needs of adult Jordanian family members of patients in ICUs. Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing, 41(1), 28–34.
Padilla Fortunatti C. F. (2014). Most important needs of family members of critical patients in light of the critical care family needs inventory. Investigacion y educacion en enfermeria, 32(2), 306–316.
Motlagh, M. E., Mirzaei-Alavijeh, M., & Hosseini, S. N. (2019). Information Needs Assessment among Parents of Children with Cancer. Asian Pacific journal of cancer prevention : APJCP, 20(6), 1865–1870.
Poppe, C., Koné, I., Iseli, L. M., Schweikert, K., Elger, B. S., & Wangmo, T. (2020). Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review. Amyotrophic lateral sclerosis & frontotemporal degeneration, 21(7-8), 519–541.
Hughes, H. (2021). Patient safety and human rights. In Routledge Handbook of Global Health Rights (pp. 259-278). Routledge.
Constand, M. K., MacDermid, J. C., Bello-Haas, D., & Law, M. (2014). Scoping review of patient-centered care approaches in health care. BMC health services research, 14(1), 1-9.
Hwang, J. I., Kim, S. W., & Chin, H. J. (2019). Patient Participation in Patient Safety and Its Relationships with Nurses' Patient-Centered Care Competency, Teamwork, and Safety Climate. Asian nursing research, 13(2), 130–136.
Wellburn, S., van Schaik, P., & Bettany-Saltikov, J. (2019). The Information Needs of Adolescent Idiopathic Scoliosis Patients and Their Parents in the UK: An Online Survey. Healthcare (Basel, Switzerland), 7(2), 78.

No competing interests reported.

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What patients and their families want to know before and after ICU tour for lung cancer surgery: a qualitative study

Status:

Version 1

Abstract

Figures

1 Introduction

2 Methods

2.1 Study setting

2.2 Study participants

2.3 Data collection

2.4 Data analysis

2.5 Quality control

2.6 Patient or public participation

3 Results

3.1 Respondent characteristics

3.2 Overall information needs

3.3 Patient-related information needs

3.4 Family members-related information needs

4 Discussion

4.1 Main findings

4.2 Patient-related information needs

4.3 Information needs of family members

4.4 Implications for clinical and management

4.5 Study strengths and limitations

5 Conclusion

Declarations

References

Additional Declarations

Supplementary Files

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Version 1