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Original research
Qualitative study of the perceived experiences and needs coping of primary caregivers of patients with breast cancer during operation in central China
  1. Min Li1,2,
  2. Jun Guo2,
  3. Jinnan Gao2,
  4. Linying Wang2,
  5. Yongxia Ding1
  1. 1Nursing College, Shanxi Medical University, Taiyuan, Shanxi, China
  2. 2General Surgery Department, Shanxi Bethune Hospital, Taiyuan, China
  1. Correspondence to Professor Yongxia Ding; yongxiadingding{at}sxmu.edu.cn

Abstract

Purpose The purpose of this study is to gain an in-depth understanding of the intraoperative waiting period experience and needs response of primary caregivers of patients with breast cancer.

Method Using a purposive sampling method, 16 primary caregivers of patients with breast cancer admitted to the Department of Breast Surgery of Shanxi Bethune Hospital from January to May 2022 were selected as study subjects. Semistructured in-depth interviews were conducted using a qualitative research method.

Results Five themes were extracted from the levels of safety and security, information transfer, emotion management, psychological adjustment and role adaptation: safety first and intraoperative care, lack of information and misdirection, negative emotions and tired of coping, ineffective worry and overthinking, and role multiplicity and bearing alone, respectively.

Conclusion The intraoperative waiting period for primary caregivers of patients with breast cancer felt multidimensional and had less than optimal needs satisfaction. Healthcare professionals should use the existing needs as an entry point to give appropriate interventions to enhance the coping ability of caregivers of patients with breast cancer.

  • Breast tumours
  • QUALITATIVE RESEARCH
  • Patient Participation
  • Quality of Life
  • Breast surgery

Data availability statement

Data are available on reasonable request.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • This study examines the experiences and coping needs of primary caregivers of patients with breast cancer during surgical intervention to understand their intrinsic needs.

  • Data analysis from this research revealed five distinct themes related to safety and security, information dissemination, emotional regulation, psychological adjustment and role adaptation.

  • While this study is based on observations from a single centre and may be influenced by local contexts, it is essential to note its limitations.

  • The findings might have limited generalisability owing to the narrow demographic and geographical scope of the sample.

Introduction

Breast cancer is one of the most prevalent malignancies in the world. More than 2 million people around the world are diagnosed with breast cancer every year,1 and surgery is the most commonly used method to treat breast cancer2 3 Studies have shown4 5 that primary caregivers are often under severe psychosocial stress, and they are shown to have different care loads and needs when patients go through different treatment periods. Healthcare professionals focus more on the needs of the patient and pay little attention to their caregivers.6 When the needs of patients’ families are not understood or met, it can easily lead to doctor–patient conflicts.7 In the 1980s, Western countries have paid attention to the needs of intraoperative patients’ families, while domestic research on the anxiety and needs of families is late.8 In the long waiting process of surgery, caregivers are separated from patients and must wait outside the operating room, which can cause anxiety and fear. In order to understand the nursing experience, inner needs, feelings and expectations of breast cancer patients’ caregivers, some researchers have carried out research on the mental experience of breast cancer caregivers, but they have not focused on the special period of waiting during surgery. Therefore, it is necessary to research the psychological needs of caregivers. The primary caregivers are often regarded as ‘hidden patients’. While taking into account the health intervention of patients with breast cancer, we should pay attention to the caregiving load of the primary caregivers during the waiting period and intervene accordingly. and this study used a qualitative research method to describe the real inner experience of primary caregivers of patients with breast cancer during the intraoperative waiting period, aiming to better meet the needs of primary caregivers, provide a basis for providing targeted care measures and enhance disease coping ability.

Subjects and methods

Subjects

The study used purposive sampling to select primary caregivers of patients with breast cancer who underwent surgical treatment at the Department of Breast Surgery, Bai Qiu En Hospital in Shanxi, North China, from January to May 2022. Bai Qiu En Hospital is a Grade III Class A hospital, with the Department of Breast Surgery performing over 800 breast cancer surgeries annually, ensuring a representative sample for our study using a maximum difference strategy. The inclusion criteria were as follows: (1) those who are related by blood or relatives take care of patients for ≥4 hours a day; (2) those decision-maker who bears the main care task, takes the longest care time and undertakes the treatment when there is more than one caregiver at the same time; (3) those who know the diagnosis of patients; (4) patients need surgical treatment; (5) the caregiver’s age is ≥18 years old and (6) those who are able to communicate normally. Exclusion criteria were as follows: (1) those with language communication disorders (determined by inquiry); (2) those with paid employment relationships and (3) people who have been diagnosed with mental illness before (determined by inquiry). The sample size of this study was determined based on the fact that the data of the interviewees were repeated, and no new themes were presented at the time of data analysis, that is, resource saturation. Sixteen caregivers were interviewed in this final study, including 11 males and 5 females. To protect the privacy of patients and caregivers, their signatures are indicated as N1–N16.The general information of the 16 caregivers and patients is shown in table 1.

Table 1

General information about the caregiver and the patient

Methods

This study employs the phenomenological approach to qualitative research, collecting data through semistructured and in-depth face-to-face interviews. This method allows for the investigation and understanding of caregivers’ authentic feelings in their entirety, as it is conducted within a natural setting through interaction with the subjects. After the interview, the data were analysed by Colaizzi’s seven-step analysis method: (1) Read all the interview data carefully to form a general understanding of the research subject’s description: This is supplemented by an in-depth review of all materials provided by the interviewees and a comprehensive understanding of the research subject’s descriptions, with the aid of field notes; (2) Extract relevant statements that correspond to the research questions: Carefully examine the text word by word, identifying and annotating key terms and sentences that are repeated or relevant to the research question and extract meaningful statements that align with the research problem; (3) Summarise and code the meaningful statements: The researcher should induct and refine recurring viewpoints, followed by coding, while avoiding preconceptions related to the phenomenon under study; (4) Summarise the coded statements and search for common concepts or characteristics to form categories: At least two researchers scrutinise and reflect on the original statements, searching for common concepts or characteristics to form themes; (5) Relate the categories to the research subjects for an exhaustive statement: Connect themes to the research subjects for an exhaustive narration, typical original statements can be extracted from each theme; (6) State the essential structure of searched characteristics: Compare similar thematic structures and their descriptions repeatedly to identify and extract common viewpoints; (7) Verify the veracity by reinterviewing with research subjects: Return the resulting thematic structure to the research subjects to verify whether their real feelings have been captured, thereby ensuring the accuracy of the results.

Study setting

This study was conducted with the primary caregivers of patients with breast cancer undergoing surgical treatment in the Department of Breast Surgery at the Shandong Bethune Hospital, a tertiary level A hospital in North China. The Department of Breast Surgery at this hospital manages all patient diagnostic and treatment information through a database, allowing access to relevant patient data through a database search, ensuring the smooth conduct of this research.

Research design

On the basis of literature search and consulting experts, taking ‘the real feelings and needs in the operation process’ as the main line of interview, we discussed with a chief physician, a deputy chief physician, a graduate student and a chief nurse. Before the start of the study, two primary caregivers of patients with breast cancer were invited to conduct a pretest interview, which pretest interview was not included in the official interview results. According to the feedback results of patients and the suggestions of experts, the final interview outline was formed. During the interview, Mandarin Chinese was used to provide patients with understandable and acceptable information to encourage them to express their genuine feelings, avoiding technical terms. The research incorporated various opinions into the interview outline, including: (1) Can you talk about your feelings and experiences at the moment? (2) Why do you feel this way? (3) What do you want to know most now? (4) In what way do you want medical staff to support you?

Recruitment process

To ensure unimpeded communication throughout the process, interviews for this study were conducted in Mandarin Chinese. First, based on the inclusion and exclusion criteria, the researchers daily checked the condition of patients admitted to the ward, and communicated preoperatively with the primary caregivers to gradually establish a trust relationship. During these interactions, the purpose and significance of the proposed study were explained to them. All the research subjects gave their informed consent to this study, signed the informed consent form, recorded the interview content synchronously, fully respected the patient’s inner expression during the interview process, carefully listened and observed the interviewees’ non-verbal behaviours except the conversation content, including dress, mood, eyes, silence time, speech speed, volume and body movements, and encouraged the patients to express their inner feelings through repetition and questioning, while taking care to avoid them.

Data collection process/technique (the interview)

In this study, the interview time is 15–20 min after the patient enters the operating room, and the surgeon and the visiting nurse are informed that the main caregivers of the patients are waiting in the operation consultation room, so that the caregivers can be interviewed with peace of mind. The interview environment is quiet, and the space is independent. The interview time is 25–40 min. Transcribe the interview recording into words within 24 hours after the interview, and sort out the notes, general information and non-verbal information of the interviewee, etc.

Well described data management and analysis

In this study, the original interview materials were coded using NVivo V.12 software, and a grounded theory research method was adopted to perform a bottom-up three-level coding on the textual materials. First, during the open coding process, researchers comprehended the authentic text materials word by word, sentence by sentence, clarified the meanings of words and sentences, and performed a precoding on the textual materials. They identified thematic concepts related to the experiences and needs during the intraoperative waiting period, named them preliminarily and tagged them as free nodes. A total of 262 free nodes were initially formed during precoding. After the formal coding of these nodes by the researchers, the number was reduced to 213 free nodes. Subsequently, the researchers associated the 213 free nodes obtained in the open coding process, and after repeated comparison, analysis and integration, tree nodes were formed. Finally, based on the associative coding, the researchers further refined the core categories.

Methodological rigour/trustworthiness

Two approaches were adopted in the coding reliability test of this study. One approach was to respect the authenticity of the original materials during the research process. If there was any uncertainty in the understanding of the interview materials, the researchers would communicate again with the respondents to obtain the most authentic data, ensuring the accuracy of the research materials. The second approach was to use the percentage of coding consistency to compare the materials coded independently by the researchers. The results showed that the percentage of coding consistency was over 80%. If there were any inconsistencies, the researchers would discuss together to ensure agreement, thereby maintaining a high level of research validity. All the researchers involved have 5 years or more experience in breast specialist clinical nursing, and have a certain degree of understanding of the physiological, psychological and social problems of patients with breast cancer and their caregivers. Training is conducted before the interview to ensure the homogenisation of the research process. For the questionable materials, clarify them during the interview and return the transcribed interview materials to the interviewees for information confirmation to control the bias. The same data were analysed by two researchers, respectively, and the results were compared.

Patient and public involvement

In this study, the maximum difference strategy was used to select representative subjects. The study used semistructured interviews with patients, but neither patients nor the public were involved in the design, implementation, reporting and dissemination plans of the study. The findings were reported to the hospital’s patient participation group, whose reflections on these results helped inform further research. Study results will be shared with patients via email once accepted. We would like to express our gratitude to all the participants.

Results

According to the interview results, five themes are abstracted from the aspects of security, information transmission, emotional management, psychological adjustment and role adaptation, namely, safety first and intraoperative care, lack of information and wrong direction, negative emotions and tired coping, ineffective worry and overthinking, multiple roles and bearing alone (see table 2).

Table 2

Interview results of main caregivers of 16 patients with breast cancer

Theme 1: safety first and intraoperative care

The interviewees emphasised that every effort should be made to ensure the safety of the patients during the operation, along with providing continuous care and attention.

Excessive anxiety leading to higher intraoperative risks

Respondents expressed that no matter what happens during the operation, they should try their best to ensure the safety of patients. N16: ‘I have only one wish, that is, she must come out safely.’ N4: ‘Yesterday, the doctor said that the operation should take into account the shape of the breast as much as possible. In fact, I just want her to come out safely.’ N11: ‘It was the director who operated on her, so that I can rest assured, but don’t let anyone else do the operation.

Focusing on patients’ well-being and looking for surgeons’ care

Before anaesthesia, we should pay attention to patients’ feelings, meet patients’ needs, and timely care and comfort patients to make them feel the help and warmth from medical staff. N3: ‘Now that there were no relatives with her, I was afraid she would be afraid to go in.’ N4: ‘She was very worried about her physical exposure during surgery, and even more worried about her physical disability after mastectomy. In fact, a word from the doctor would be a great encouragement to her.’ N8: ‘If I had been able to speak to her over the phone after going in, she might not have been so nervous.’

Theme 2: lack of Information and misdirection

The interviewees expressed that the information provided by medical personnel failed to meet their needs, and the ways of acquiring information independently and its accuracy are subject to further discussion.

Lacking information and eager for surgery-related information

Respondents expressed the hope that the medical staff could talk openly and use common language to inform the risk before operation. N12: ‘When talking with doctors and nurses before surgery, I could neither understand nor react.’ N8: ‘The information I have is far from meeting my needs.’ N10: ‘I would like to be told the results of the medical examination in the first place.’

Seeking information through multiple channels with the risk of receiving misleading news

When caregivers can rationally accept diagnosis and surgery, they will actively seek ways to obtain information, while the internet and patients are important ways to transmit information, but its accuracy remains to be discussed. N6: ‘The doctor only tells me about the possible risks, and someone told me that they wouldn’t tell me even if risks do occur.’ N14: ‘Actually, I don’t know whether she should have surgery or not. It’s ok to drink Chinese medicine online.’

Theme 3: negative emotions and tired of coping

The primary caregivers exhibited emotions such as depression and avoidance during the waiting period, and the heavy burden of care added to their physical and mental exhaustion.

Trapped in negative emotions and finding it hard to self-resolve

Respondents reported an avoidance attitude in the face of surgery. N9: ‘There are many things I don’t want to face.’ N2: ‘I don’t want to understand the options about the surgery, leave it all to the doctor.’ (Respondents shook their heads and showed helplessness). Some caregivers were disillusioned and expected a miracle, N13: ‘I hope the previous puncture results were wrong and the surgery turns out to be benign.’ N15: ‘There is still hope until the surgery is over.’ Some respondents presented a fatalistic view, N2: ‘Everything is God’s will, let’s listen to God’s will.’ N11: ‘When you are sick, doctors can’t control it, they can’t even do anything.’ N14: ‘Why should my daughter get sick, God is not fair to me.’

Mental and physical exhaustion that lead to negative coping

Some caregivers responded to the surgery in a helpless, physically and mentally exhausted state. N5: ‘I don’t have enough energy to think about things in a comprehensive way.’ N6: ‘It’s too tiring to be running around all the time.’ N16: ‘I was raising money everywhere for medical expenses for the surgery, and I don’t know what to do next.’

Theme 4: ineffective worrying and overthinking

The primary caregivers displayed emotional distress and excessive worrying about the patient’s condition during the operation.

Beset by fears

Caregivers were caught up in worrying once they were separated from the patient in the operating room. N2: ‘I heard that general anaesthesia sometimes can’t wake the patient up.’ N7: ‘Will she be in pain for so long in there?’

Anticipatory sadness

Uncontrollable lapse into overthinking as the caregiver waits outside the operating room door. N8: ‘The accident the doctor told me about yesterday, could it happen to us.’ (Tears in her eyes, but struggling to contain them). N6: ‘Watching her being pushed into the operating room, wondering if she would come out alive.’ N1: ‘She’s been taking care of the family and the children, and she won’t be able to live a good life afterwards.’

Theme 5: role multiplicity and bearing alone

Respondents expressed a weak support system, having to assume multiple roles in the family, work and society. There is an urgent need for assistance and support from various quarters.

Taking on multiple roles and eager for family and outside support

Respondents indicated that they are currently in overload as caregivers not only for the patient but also for other members of the family, and that their support systems are weak. N3: ‘The child has been in the hospital with me, and at this time she is in surgery inside, and I am waiting for her while I take care of the child.’ N8: ‘Our mom couldn’t get out of bed at home, there was no one to take care of her.’

Tired from heavy caring burden but trying to hide their feelings

Faced with surgery, the caregiver tried to hide their inner anxiety and anxiety in front of the patient, trying to bear all the stress alone. N7: ‘I didn’t dare to show my sadness in front of her, worrying that my emotions would affect her surgery today.’ N11: ‘In case of an intraoperative accident, I would also tell her that everything went well.’

Discussion

Breast cancer is an unavoidable source of stress for patients and caregivers from diagnosis to treatment. As the primary contact for patients and families, healthcare professionals are more likely to identify patients’ needs in a timely and accurate manner, and thus become indispensable participants in conveying them.6 Therefore, this study focuses on the specific time of intraoperative waiting period, describes the feeling experience and information needs of primary caregivers’ concerns from a phenomenological perspective, grasps the psychological trajectory of caregivers, and provides a theoretical basis for constructing a highly scientific, continuous and targeted whole-person-family-total care.

Create a warm medical care culture to enhance patients’ medical care experience

Studies7 9 have shown that caregivers present greater stress after a patient enters the operating room because they fear for his or her life safety. In addition, the operating room is under full closed management and caregivers cannot accompany them, so healthcare workers should fulfil the role of caregivers, understand and considerate of patients, and give them psychological support. Therefore, during the anaesthesia visit the day before surgery, patients and caregivers should be informed in detail about the upcoming surgery, and if necessary, the operating room layout should be brought along to help patients and caregivers understand the process. It should be communicated to the primary caregivers that once the patient enters the operating room, they will be led to the surgical suite by circulating nurses. Prior to anaesthesia, patients will be asked about their feelings, their needs will be met at all times, and there will be particular attention paid to the protection of their private areas. Encourage them to bravely voice their worries promptly, ease and stabilise their minds. Preinforming the primary caregivers of the above contents will to a certain extent alleviate their emotional distress while waiting outside. Therefore, there is an urgent call to actively build a complete preoperative care path from the ward to the operating room and from the patient to the caregiver, and integrate warmth and care throughout the treatment process.

Optimise information transfer strategies to promote healthy behaviours

This study shows that the different positions of medical staff and caregivers lead to different ways of thinking: before surgery, medical staff pay attention to informing about the operation process and risks, caregivers passively receive information and there are deviations from the received information, they do not fully digest the only information before surgery and routinely sign in panic. During the operation, the medical staff pay more attention to the progress of the operation and the monitoring of the patient’s condition, while the caregiver’s attention focuses on the patient’s feelings and feels anxious about the interruption of information during the operation. Therefore, medical staff should be guided by the feelings of caregivers, and scientifically formulate clear, easy-to-understand and operable conversation standards from the perspective of caregivers and patients. By establishing an information platform, relevant knowledge can be transmitted and resources can be shared. At the same time, ensure the continuity of preoperative visit, intraoperative communication and postoperative follow-up, fully respect the needs of caregivers, eliminate their doubts about the operation process, and effectively enhance trust and cooperation. Avoid compliance obstacles caused by lack and deviation of information, truly ‘know’ and ‘agree’, and extend the connotation of humanised nursing.

Emphasise emotional management and enhance humanistic caregiving

Studies have shown that caregivers’ negative emotions will lead to the decline of their potential coping ability and medical decision-making, which will adversely affect patients’ treatment process and disease prognosis to a considerable extent.10 11 Primary caregivers, as the most significant and frequent providers of care, are often overlooked.12 13 When a caregiver’s capacity to care fails to meet the patient’s needs, the caregiver experiences stress, leading to multidimensional burdens, including physiological, psychological and social, which are particularly pronounced during periods of surgical waiting. Only by paying attention to and prioritising the needs of caregivers can targeted interventions be implemented to fulfil their needs. According to the results of the interviews, nurses must provide psychological counselling to caregivers, pay attention to their psychological problems and supportive requirements and assist caregivers in effectively resolving their psychological issues. Medical staff should establish a mutual trust relationship with their caregivers, listen to their caring feelings, solve their caring concerns, communicate with them in all directions and in many ways, so as to enhance their care efficiency, relieve their sense of powerlessness and build a care model with full linkage between doctors, nurses, patients and caregivers, thus alleviating their physical and mental stress and enabling them to devote themselves more effectively to caregiving.

Trace back stress reaction and avoid unfavourable factors

Studies have shown that caregivers are under the heaviest psychological stress during patient surgery,14 and primary caregivers, as important supporters of patients,15 are plagued by complex psychology and heavy pressure. Coupled with the fact that the operating room is a closed environment, when the caregiver is separated from the patient, concerns about patient pain, intraoperative safety and surgical outcomes can add to the psychological burden of the caregiver due to lack of understanding of the patient’s condition, and the psychological condition between the patient and the family is mutually influential.16 17 In the traditional Chinese concept, caregivers consider it their duty to take care of their sick loved ones due to their responsibilities and duties,18 and devote all their energy to watch over the door of the operating room. The interview process revealed that the caregivers were under the stress of powerlessness in the face of the stressor of breast cancer diagnosis, and the depression of the waiting period for surgery could not be released. This suggests that preoperative education and emotional support should be tailored to the caregiver and the patient to alleviate their concerns and worries. Furthermore, the establishment of a surgical information platform outside the operating room can provide real-time dynamic updates of the patient’s surgical progress and status from the moment they enter the operating room. Every stage of the surgery, and every detail from inside the operating room, are displayed on an electronic screen. Through this seamless information chain, primary caregivers, even when outside the operating room, can keep abreast of the latest surgical status at any time. This can make the waiting period feel less prolonged, and potentially alleviate their anxious mindset.

Build a multichannel support system for caregivers

Interviews revealed that when spouses acted as caregivers, they viewed caregiving as an extension of their marital role and a responsibility they should fulfil.19 When parents acted as caregivers, they were in extreme pain when the patient entered the operating room and presented premonitory grief, but tried to hide their grief in front of the patient and refused to convey their true feelings to the outside world. When children act as caregivers, they actively seek surgery-related knowledge and can cope with intraoperative situations head-on; when caregivers are female, they are more likely to experience negative emotional distress and are unwilling to face it,20 21 while male caregivers choose avoidance and suppression of emotions as self-protection strategies. The interviewees revealed that surgery experienced pain, suffering, despair, loss and struggle, but also experienced the preciousness of family, love and friendship. The research suggests that medical staff should take stressors as entry points, providing individualised support and intervention according to the different situations and psychological pathways of primary caregivers. It also notes the importance of recognising that supportive needs follow a dynamic changing trend, peaking during the waiting period for surgery.22 23 Medical staff should identify the needs of caregivers and encourage them to seek professional help in a timely manner, in order to improve caregiving efficiency and boost confidence in caregiving.

In conclusion, the caregivers’ intraoperative waiting period feels multidimensional and needs satisfaction is still unsatisfactory, which will have a negative impact on the quality of care. Therefore, healthcare professionals should work together from point to point to optimise medical resources and precisely implement interventions to promote positive caregiver experiences, and continuously and dynamically work side by side with caregivers to promote patient recovery.

Data availability statement

Data are available on reasonable request.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by Shanxi Bethune Hospital Medical Ethics Committee (approval No. YXLL-2022-082). Participants gave informed consent to participate in the study before taking part.

References

Footnotes

  • Contributors ML participated in clinical treatments, gathered data and drafted the initial manuscript. ML is the guarantor. JGuo oversaw data collection. JGao supervised data analysis and edited the manuscript. LW conceptualised the case study and contributed to manuscript revisions. YD was primarily responsible for subsequent revisions to the manuscript. All authors have read and approved the final manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.