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Nursing
Original research
What are the barriers and facilitators to help-seeking behaviour for symptoms in patients with ovarian cancer in China? A qualitative study
  1. Haining Yin1,
  2. Yingjuan Zha1,
  3. Yuxin Zhou2,
  4. Hua Tao3,
  5. Di Zhu4
  1. 1 Department of Gynecology, Zhongda Hospital Southeast University, Nanjing, Jiangsu, China
  2. 2 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing Midwifery & Palliative Care, King's College London, London, UK
  3. 3 Department of Nursing, Huai'an Second People's Hospital, Huai'an, Jiangsu, China
  4. 4 Department of Rheumatology and Immunology, Nanjing Drum Tower Hospital, Nanjing, Jiangsu, China
  1. Correspondence to Haining Yin; 577486764{at}qq.com

Abstract

Objectives To explore the barriers and facilitators to help-seeking behaviour for symptoms among patients with ovarian cancer in China.

Design This semistructured interview-based study used a descriptive phenomenological research method.

Setting The study was conducted in China.

Participants 17 patients with ovarian cancer were selected based on the principle of maximum differentiation.

Outcome measures and analysis The study followed the consolidated criteria for reporting qualitative research. Data were analysed using the Colaizzi’s seven-step method.

Results Three main themes were identified: (1) low level of symptom perception and cancer risk awareness: unawareness of early non-specific symptoms, mistaken attribution of symptoms and delay caused by a previous diagnosis of benign tumours; (2) cognitive factors influencing help-seeking behaviour: positive health beliefs, perceived benefits of help-seeking, previous adverse medical experiences, stigma and restrained self-disclosure and medical treatment accompanied by distress and (3) practical factors affecting help-seeking behaviour: time pressure caused by social role burden, financial burden, lack of informal carers and mismatch between medical resources and patients’ needs.

Conclusion This study shows that help-seeking behaviour for symptoms among patients with ovarian cancer is not valued. The importance of early symptom recognition, the psychosocial needs of patients and practical barriers must be considered to develop interventions to promote help-seeking behaviour.

  • Nursing Care
  • Gynaecological oncology
  • China
  • Cognition
  • Health Literacy
  • Nurses

Data availability statement

Data are available on reasonable request.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi-org.ezproxy.u-pec.fr/10.1136/bmjopen-2024-087602

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    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • The Colaizzi’s seven-step method was used to identify help-seeking behaviour for symptoms in patients with ovarian cancer comprehensively.

    • Interviewers used rephrased questions to help participants consider the barriers and facilitators behind their help-seeking behaviour.

    • The sample size and the economic and cultural backgrounds of patients with ovarian cancer may limit the transferability of the study results.

    • Perspectives on the experience of help-seeking behaviour for symptoms in patients with ovarian cancer at different times should be examined in future studies.

    Introduction

    Ovarian cancer (OC) is the second most common cause of death among women with gynaecological cancer globally, with approximately 314 000 new diagnoses and 207 000 deaths annually worldwide.1 Approximately 75% of the patients are diagnosed with abdominal metastases because of the insidious onset of OC and the absence of specific detection methods.2 The 5-year survival rate of patients with OC is only 20%–40%.3 In recent years, the use of innovative surgical methods and new medications has resulted in increased progression-free survival and overall survival rates for individuals with OC, as compared with previous time periods.4 5 However, due to the lack of specificity of early symptoms, there are still many patients who are diagnosed at an advanced stage. This is one of the reasons for the high recurrence rate of patients with OC. Meanwhile, compared with patients with other gynaecological malignancies, patients with OC experience more symptomatic distress, such as endocrine disruption, diminished femininity, impaired body image and loss of fertility.6 7 The specificity of symptoms in the OC groups and their different choices of help-seeking behaviour for symptoms inspired the direction of our study.

    Help-seeking behaviour for cancer symptoms is a complex, informed decision-making process in which an individual identifies and interprets cancer symptoms and seeks help from a healthcare professional.8 Studies have shown that delayed help-seeking behaviour for cancer symptoms can lead to increased complications, decreased survival and higher rates of recurrence and mortality.9–11 The process by which patients with cancer perceive symptoms to initiate help-seeking behaviour is influenced by individual and sociocultural contexts. A multicentre qualitative study described the influence of psychosocial context on help-seeking behaviour among patients with breast cancer, including the negative influence of relatives, financial worries, fatalism about cancer and denial of the disease.12 Demographic factors can also contribute to delays in help-seeking behaviour for symptoms, particularly for individuals from socioeconomically deprived areas and other hard-to-reach groups, such as populations in remote areas and people with learning disabilities.13

    Much of the current research on help-seeking behaviour for symptoms has focused on diseases such as breast cancer, colorectal cancer and lung cancer.14–16 There is a lack of research exploring the help-seeking behaviour for symptoms among patients with OC in China. The clinical course of OC is usually characterised by late diagnosis, frequent recurrences and prolonged treatment periods due to the expanded use of maintenance therapy. These features may be a unique or long-term cause of suffering in patients with OC. These patients will likely have a less positive attitude towards help-seeking behaviour for symptoms than patients with other cancers because of physical distress (pain, fatigue, nausea, vomiting and sexual dysfunction), family-related problems (burden of care from family members), psychosocial problems (fear of recurrence, depression and anxiety) and practical difficulties.6 17 18 Moreover, as Chinese cultural settings emphasise restraint in disclosure, many patients, especially those who are elderly and of low socioeconomic status, tend to hide their need for help. They do not actively express symptom information to their doctors when doctors do not have sufficient time to ask them about their symptom characteristics.19 Under this special cultural norm, help-seeking behaviour for symptoms among patients with OC in China is of unique research value. The advantage of the qualitative research method is that it can penetrate a specific situation, understand all the information related to the event, such as its background, and finally form a conclusion that best represents the specific situation. It is natural, following the dynamic development of things, to highlight the subject position of the research with strong explanatory and inductive research methods. By applying qualitative research methods, this study was able to better understand the characteristics and unique experiences of patients with OC in China and find the barriers and facilitators to help-seeking behaviour for symptoms more comprehensively.

    Current research on help-seeking behaviour among patients with cancer is only available for early symptoms before diagnosis,14 20 21 with less research on the period between prediagnosis and recovery. Help-seeking behaviour for cancer symptoms is not only present in the prediagnostic period of a patient’s life, but many patients also lack motivation for help-seeking behaviour for symptoms after diagnosis. This leaves physicians with a lack of understanding of patients’ symptom management needs during treatment, which can affect patients’ satisfaction with treatment and quality of life. OC treatment is a long and repetitive process in which patients experience high levels of symptom distress.6 If patients with OC do not seek help during treatment, their symptoms have the potential to develop further into a disease crisis. Therefore, this study aimed to explore the barriers and facilitators to help-seeking behaviour for symptoms in patients with OC in China and inform the development of interventions to improve help-seeking behaviour for symptoms.

    Methods

    Design

    Semistructured, face-to-face interviews were conducted for this qualitative study. We followed the theory of descriptive phenomenology, which aims to portray the real world and present people’s experiences without interpretation. The Standards for Reporting Qualitative Research checklist was used to enhance the study’s transparency (online supplemental appendix 1).22

    Supplemental material

    Setting, participants and sampling

    This study was conducted at a tertiary care hospital in Nanjing, Jiangsu Province, China. This hospital is a pilot unit for the quality control of standardised OC treatment in China.

    Purposive sampling was used to select patients with OC as study participants, and the maximum differentiated sampling strategy was followed based on the patients’ age, education level, place of residence and pathological stage. The inclusion criteria were as follows: (a) compliance with the diagnostic criteria for OC (International Classification of Diseases, 10th edition, C56); (b) age range of 18–80 years; (c) having received at least one of the following treatments: OC resection, chemotherapy, immunotherapy and targeted therapy; (d) being aware of their diagnosis. The exclusion criteria were as follows: (a) patients diagnosed with mental illness or cognitive impairment; (b) patients with communication disorders, including deafness and aphasia and (c) patients with other serious illnesses or cancer. Interviews and data analysis were conducted simultaneously. The sample size for this study was determined by saturation of the interview data. When the 15th patient was interviewed, no new themes were generated from the data analysis. To ensure that the data were saturated, we interviewed two more patients, after which we concluded that we had obtained all the necessary information; ultimately, we interviewed 17 patients with OC.

    Data collection

    Based on previous research findings, a conceptual model of the help-seeking behaviour for cancer symptoms, and other literature relating to help-seeking behaviour for symptoms,8 14 20 21 23 the topic guide covered three domains: (1) experiences of help-seeking behaviour for symptoms associated with OC diagnosis; (2) experiences of help-seeking behaviour for symptoms after receiving treatment and (3) dilemmas of help-seeking behaviour for symptoms among patients with OC in China (online supplemental appendix 2). Researchers screened eligible hospitalised patients with OC using the medical records system, assessed their interest in participation and obtained their consent. Final changes were incorporated into the interview guide after a pilot interview with two patients with OC. Semistructured interviews were conducted by the first author, who has a master’s degree and is a nurse in gynaecological oncology. She had extensive nursing experience and was trained to conduct qualitative interviews. Additionally, as a clinical practitioner, this enabled her to engage and build rapport with patients with OC during the course of her work.

    Supplemental material

    Data were collected between August and December 2023. The interviews were conducted in a quiet room in the hospital’s gynaecology ward. The participants were informed about the purpose, content and procedures of the study, and written informed consent was obtained from all participants. Each interview lasted 30–60 min. After the interviews, the participants were thanked and given prizes (hand cream and a packet of masks) for participating in the study. All interviews were audio recorded. The first author recorded field notes from the interviews to inform subsequent interviews and data analysis. Within 24 h hours of each interview, the first author transcribed the interview recordings into text format, checked them manually and proofread them with field notes for additions.

    Data analysis

    Data were analysed by two researchers independently (first and second authors, with backgrounds in oncology nursing and qualitative methods) using NVivo V.12 software and the Colaizzi’s seven-step method.24 The analysis process is shown in figure 1.

    Figure 1
    Figure 1

    Process of analysing interview data using the Colaizzi’s seven-step approach.

    Assuring rigour

    Confirmability, dependability, credibility and transferability are the criteria used to build rigour and trustworthiness in qualitative findings.25 This study enabled the participants to express their inner thoughts fully by establishing a trusting relationships with them. Confirmability was also achieved in the interviews by recording non-verbal behaviour such as facial expressions, body movements and keywords repeatedly mentioned by the participants during the interviews. The first author is a gynaecological cancer nurse with a master’s degree, which was valuable in designing the interview guide and conducting all interviews to increase credibility.

    The first and second authors independently coded the initial interview transcripts once the textual data had been collated and then discussed them to reach a final consensus and ensure the reliability of the findings. Steps were taken to ensure credibility and transferability, including fully describing the participants and the context in which the data were collected. Researchers were required to keep a reflective diary to analyse the impact of an individual’s prior knowledge, personal experiences, subjective feelings about the data and self-bias on the study.

    Patient and public involvement

    There was no patient or public involvement in the study. Participants were only invited to participate in qualitative interviews.

    Results

    Demographic and clinical characteristics

    17 patients with OC participated in this study (table 1). Their mean age was 57.12 years (range: 36–75 years). Most women had no college education (15/17). Married women comprised the majority (14/17), and most women already had stage III or IV OC at the time of diagnosis (12/17).

    View this table:
    Table 1

    Demographic and clinical characteristics of the participants

    We grouped the findings into three themes related to the participants’ descriptions of the barriers and facilitators to help-seeking behaviour for symptoms: low level of symptom perception and cancer risk awareness, cognitive factors influencing help-seeking behaviour, and practical factors affecting help-seeking behaviour (figure 2).

    Figure 2
    Figure 2

    Study themes and subthemes.

    Theme 1: low level of symptom perception and cancer risk awareness

    Unaware of early non-specific symptoms

    Many participants were unaware of the early signs of OC and experienced symptoms such as loss of appetite, gastrointestinal discomfort and ascites prior to diagnosis. Their symptoms were not linked to gynaecological disorders, which led them to believe that they were suffering from gastrointestinal disorders:

    I didn't want to eat for a while, I only wanted to eat a semi-liquid diet every day, and if I ate too much I would feel nauseous. I was afraid that my stomach was sick and I had a gastroenterostomy done. The test results were normal and I didn't have any further examination. One day I felt a terrible pain in my stomach and went to the hospital to see the gastroenterologist, who said I had ascites and suspected that I had cirrhosis disease. Then the doctor arranged for me to undergo many tests. Until 9 days after hospitalization it was found to be ovarian cancer. I was shocked that I had ovarian cancer because I am usually very healthy and I have not had gynecological diseases before. (Participant #2, in her late 40s, at stageIII)

    Mistaken attribution of symptoms

    Some participants attributed these symptoms to normal physiological phenomena. Some participants recalled their experiences before diagnosis of the disease and mentioned that they were tired during that time, which they attributed to their busy work schedules:

    I ran a new shop last year and I often felt tired and didn't want to eat, which I thought might be due to being too busy at work. (Participant #9, in her early 40s, at stage III)

    When they experienced irregular menstruation, they attributed it to their menopausal disorder：

    There was a time when my menstrual period lasted longer and sometimes I felt bloated and painful in my abdomen. My friends told me that it was due to menopause, so I didn't go to the hospital in time. (Participant #1, in her early 50s, at stage II)

    When participants gained weight and had a larger abdomen, they attributed it to middle-aged obesity：

    For the past six months, my belly has been getting bigger and bigger. I thought it was because I had eaten too much. It wasn't until I felt sick that I went to the hospital for a checkup. (Participant #4, in her mid 60s, at stage III)

    Delay caused by previous diagnosis of benign tumours

    Some patients with OC reported that previous diagnoses of benign gynaecological conditions resulted in reduced motivation to seek help for their symptoms and that disease progression was not detected in time:

    I went to the hospital for a checkup because of my menstrual disorders and the doctor found a cyst on my left ovary. I thought to myself that it wasn't something serious because I have always had adenomyosis and growing ovarian cysts is a relatively common occurrence. So I didn't seek medical treatment in time. (Participant #8, in her mid 30s, at stage II)

    Theme 2: cognitive factors influencing help-seeking behaviour

    Positive health beliefs

    Some participants actively sought information about OC treatment. Consultations with doctors and internet access were the main channels：

    I usually consult my doctors actively and they explain a lot of knowledge related to ovarian cancer treatment to me. I would also check research papers to learn about the treatments, survival and recurrence rates of this disease online. I wish I knew more about ovarian cancer and these will make me feel more at ease about the treatment process. (Participant #10, in her late 40s, at stage III)

    Perceived benefits of help-seeking

    Most participants described how they felt about their symptoms during treatment. When they sought help from their healthcare provider, a more favourable treatment outcome would have reinforced their subsequent help-seeking behaviour:

    During the post-operative period, my stomach was quite bloated and nurses instructed me to massage my stomach and chew gum, which I felt was useful. When I had difficulty in urinating, nurses instructed me to do pelvic floor muscle function training, which was really effective after insisting for a period of time. I am willing to turn to them for help when I encounter symptom-related problems later on. (Participant #3, in her early 60s, at stage IV)

    Previous adverse medical experiences

    Some participants felt unfamiliar with the hospital environment during their visits, and the current information-based healthcare environment made them feel helpless:

    I can't play with a smartphone. I can't operate the self-service machines in the hospital either. My daughter helps me find a doctor every time I am hospitalized. If I come to the hospital by myself, I can't handle the procedure. (Participant #6, in her early 70s, at stage IV)

    Stigma and restrained self-disclosure

    Some participants felt a sense of shame due to the loss of female genitalia, hair loss and skin pigmentation after treatment. They were also concerned about social prejudice that prevented them from expressing their thoughts and feelings:

    After the chemotherapy I lost my hair badly, my skin developed a lot of blotches and I became less and less confident as a woman. I didn't want people to know about my condition and I didn't want to go out and meet my friends. I was afraid they would talk about me behind my back. (Participant #12, in her mid 50s, at stage III)

    Medical treatment accompanied by distress

    Treatment of OC is a long-term process. Some participants indicated that they had experienced considerable distress during the treatment period, including fear of recurrence and side effects:

    When I developed some new symptoms, I was worried that the ovarian cancer had metastasized. A few days before each hospital stay, I would feel anxious about the chemotherapy I was about to receive. I feel so painful after chemotherapy that sometimes I want to give up on the treatment. (Participant #14, in her mid 60s, at stage II)

    Theme 3: practical factors affecting help-seeking behaviour

    Time pressure caused by social role burden

    Some participants were young and middle-aged women with heavy care responsibilities in their families. They often put the needs of their family members ahead of their own, resulting in delayed help-seeking behaviour for their symptoms:

    My menstrual period was irregular and I planned to wait until my kids' winter holidays were over before going to the doctor. I didn't expect that on the day of Chinese New Year I suddenly had a lot of blood coming out of my vagina and I rushed to the hospital. (Participant #10, in her late 40s, at stage III)

    Financial burden

    Some participants were rural women with lower financial means, and when they experienced symptoms, they preferred to tolerate them until they worsened. They felt that seeking medical attention would cause a financial burden for them:

    When I used to have some discomfort, I thought it was not a serious illness and I would go to the pharmacy and buy some medication to relieve the symptoms. I used to think that going to the doctor would cost me a lot of money for tests. These tests may be unnecessary. (Participant #5, in her late 60s, at stage III)

    Lack of informal carers

    Some participants said that after surgery or chemotherapy, they were extremely weak and could not take care of themselves. Owing to work, childcare and many other reasons, their family members could not provide sufficient support, which gave rise to negative help-seeking behaviour:

    I often feel weak after chemotherapy. As I was not accompanied by a family member, I rarely got out of bed due to fear of falling. My treatment was all at the doctor’s discretion. The doctor is very busy every day and I seldom take the initiative to tell him when I am not feeling well. When my daughter used to come to take care of me, she was the one who communicated with the doctor about the treatment plan. (Participant #15, in her mid 60s, at stage III)

    Mismatch between medical resources and patients’ needs

    OC is a chronic disease, and patients often require multiple medical visits. This not only creates a greater financial burden for patients but also increases transport and time costs. Most of the participants hoped that community healthcare centres could develop various care programmers to meet their rehabilitation needs:

    My home is far from the hospital and I have to take a long bus ride every time I come to the hospital. I have a PICC central venous catheter on top of my arm which needs maintenance once a week. If the community hospital can maintenance my PICC central venous catheter for me, I can save a lot of transportation and time costs. (Participant #5, in her late 60s, at stage III)

    Discussion

    To our knowledge, this is the first qualitative study conducted in China to explore the barriers and facilitators to help-seeking behaviour for symptoms among patients with OC. The findings of this study add depth and breadth to our understanding of the help-seeking behaviour for symptoms among patients with OC in China. Although these findings are preliminary, they are novel and could be used as a step towards the development of personalised interventions for improving help-seeking behaviour and effective symptom management in patients with OC.

    The findings from the interviews with patients with OC can be addressed through three themes. The first is ‘low level of symptom perception and cancer risk awareness’ where patients’ lack of cancer risk awareness and knowledge of the disease caused them to delay help-seeking behaviour. The next theme was ‘cognitive factors influencing help-seeking behaviour’ where help-seeking behaviour can be facilitated or hindered by positive health beliefs, perceived benefits, previous adverse medical experiences, stigma and restrained self-disclosure and medical treatment accompanied by distress. The final theme was ‘practical factors affecting help-seeking behaviour’ where social support from family, healthcare providers and government agencies do not meet the needs of women dealing with OC.

    Low level of symptom perception and cancer risk awareness

    Our study found that women had lower level of early symptom perception and risk awareness of OC. Early symptom detection and early diagnosis are recognised as key factors for effective cancer management and patient survival.26 The lack of specificity in the early symptoms of OC has led to many patients being in the middle to late stages of the disease at the time of diagnosis.27 28 Lack of symptom perception often leads to delayed help-seeking behaviour and diagnosis, especially if they believe that certain signs or symptoms (small lumps or absence of severe pain) are not signs of cancer or if the symptoms do not interfere with activities of daily living.29 For example, adult patients diagnosed with advanced colorectal cancer in Oman believed that their symptoms were not sufficiently severe enough to warrant seeking early medical help.15 Knowledge of cancer symptoms is a prerequisite for triggering the correct help-seeking response. Currently, the Chinese Government has been vigorously pursuing a policy of screening for cervical and breast cancers, and awareness-raising efforts for OC have been limited. Chinese women lack knowledge of early symptoms and risk assessment of OC, which makes it difficult for them to develop awareness of help-seeking behaviour for symptoms.30 To address this concern, awareness of the early symptoms of OC, including stomach upset, ascites and loss of appetite, can be increased. Disease perception and help-seeking behaviours for symptoms among patients with OC can be promoted through OC-related education and information dissemination, health screening and testing, risk assessment tools, and advocacy for public health policies.

    Cognitive factors influencing help-seeking behaviour

    Even when adult patients with cancer present with serious symptoms, such as rectal bleeding, there is a delay in seeking help.31 This suggests that other unrecognised factors may prevent timely help-seeking. Our findings highlight that women’s help-seeking behaviour is influenced by cognitive factors. Many psychological theories, including the theory of planned behaviour,32 the health belief model,33 the behavioural economics model34 and the Capability, Opportunity, Motivation, Behaviour Model of Behavioural Change,35 have been used to determine what motivates or hinders help-seeking behaviour in symptomatic patients. These psychological theories indicate that cognitive factors have an important influence on behaviour, which corroborates the results of this study. Health beliefs directly influence patients’ motivation for help-seeking behaviour for symptoms. Individuals who perceive risks to their health may be more motivated to get a physical exam or consult a professional.36 Understanding the impact of these beliefs on help-seeking behaviour for symptoms in patients with OC can help physicians design more effective interventions such as the dissemination of public health information through social media platforms, including Public Health Campaigns and Public Service Announcements to improve healthcare utilisation in patients with OC.37 The present study also found that some OC patients’ help-seeking behaviour was reinforced after perceiving the benefits of help-seeking, which is consistent with Williams’ findings.38 Perceived benefit is predictors of help-seeking behaviour for cancer symptoms.39 Healthcare professionals can improve patients’ perceptions of the benefits of medical interventions through strategies such as patient participation in decision-making, tailored and personalised information, emphasis on short-term benefits and psychological support.40 41 This not only helps to increase patients’ willingness to seek help but also improves their overall health.

    Adverse experiences during previous healthcare visits affect patients’ motivation and proactivity towards help-seeking behaviour. China is a country with a large population, and although it has been rapidly advancing its healthcare system to improve the convenience and effectiveness of patients’ access to healthcare, the existing healthcare resources do not better meet patients’ needs. This has led to many patients having adverse experiences when seeking medical care, such as long waiting lines, inadequate communication of medical information and unappreciated needs.42 Additionally, doctor consultations that are too short to provide proper feedback to patients can lead to adverse experiences.43 Besides, with the development of internet information technology, the use of the internet and mobile phones for registration and checking examination results has become a common phenomenon. Nevertheless, many older women, especially in rural areas, have not adapted to this environment, leading them to believe that the development of internet information technology has increased their sense of helplessness in accessing medical care and dealing with adverse symptoms, even when hospitals are staffed with volunteers to guide them.44 45 Based on our reflections on the findings about OC patients, we recommend that when applying internet information technology to improve the medical environment, hospitals can set up different instrument modes for patients of different cultural levels and regions, such as voice broadcasts, animated screening of the registration process or even dialect broadcasts, to improve patients’ familiarity with the hospital environment. Health policy-makers can evaluate the ability and effectiveness of hospitals in applying internet information technology by surveying patients’ satisfaction with internet services. These measures can provide reference for the formulation of health policy about improving patients’ experience.

    The most common barriers to help-seeking behaviour are personal-level attitudes that influence health decision-making,46 such as illness stigma, embarrassment and low mental health literacy,45 which were also found in our study. Changes in female body image and sexual characteristics caused by treatment modalities such as OC resection surgery and chemotherapy make patients highly susceptible to negative emotions and feelings of shame.38 This leads to a decrease in patients’ ability and initiative to cope with cancer treatment47 48 and a reluctance to disclose symptoms. Approximately 80% of patients with OC experience recurrence after first-line treatment.49 They require frequent medical visits and tumour marker rechecking. When they experience some symptoms in their bodies, they are often in the paradox of seeking a doctor’s explanation and withdrawing from seeking help for fear of cancer recurring.50 51 It has been proven that reluctance to discuss the disease was negatively associated with help-seeking behaviour for symptoms among patients with OC.52 Compared with other gynaecological malignancies, patients with OC are more specific in their symptomatic distress. Healthcare professionals can use stigma interventions53 and long-term psychological work to promote help-seeking behaviour for symptoms in patients with OC.

    Practical factors affecting help-seeking behaviour

    The impact of practical barriers on help-seeking behaviour in patients with OC also deserves attention. Many patients reported that greater time pressure due to family responsibilities and busy work schedules, resulting in a lack of opportunities to seek help for their symptoms. In the social and cultural context of China, women have always shouldered the important responsibility of taking care of their families and educating children.54 Simultaneously, the dedication to mother’s love has always been preached by the media and society. This can lead to women sacrificing their willingness to seek help from their families. One study has shown that college students are 3.43 times more likely to seek medical help than homemakers.55 In addition, with the development of society, an increasing number of professional women with OC need to balance work and cancer treatment.56 The burden of women’s multiple social roles makes it difficult for them to have sufficient time to attend to and manage their symptoms related to OC. If healthcare professionals are aware of female role conflict issues and provide adequate social support to these women, it will be effective in improving help-seeking behaviour for symptoms in patients with OC.

    Informal care is defined as ‘non-normative support for patients through moral or kinship relationships, without state intervention’.57 The informal care providers are mainly family members. They not only take care of the patient physically but also provide emotional and social resource support. Often, patients with OC have to seek medical treatment and take care of themselves alone because of busy family members and childcare. Informal care providers’ deficits may significantly reduce the motivation for help-seeking behaviour in patients with OC. Potential drivers of this phenomenon are their dependence on family members and inadequate self-management skills.58 We suggest that the self-management ability of patients with OC can be improved through education, training and the establishment of social support systems. Furthermore, patients with OC are in declining health due to cancer disease factors, surgery or chemotherapy. At the same time, women are a sentimental group, and the recurrence of OC is a serious physical and mental challenge for them. The multidimensional support provided by informal care providers is essential in this process. The value of informal care providers in the recovery of patients with OC deserves to be emphasised.

    These findings suggest that there is currently a prominent mismatch between healthcare resources and patient’s needs in China. Distance from the healthcare facility, mistrust of the healthcare providers, quality of care provided by the healthcare facility and health system factors are some of the important reasons that influence patients to seek medical help.59 60 Patients with OC need to seek frequent medical treatment, which not only adds to the financial burden of patients but also results in higher time and traffic costs, especially for patients in remote areas. Time pressures during consultations and the fragmentation of primary care also lead to reduced reporting of patients’ symptoms.61 Facilitating access to healthcare resources and high-quality healthcare services has become a common requirement for many patients with cancer. In recent years, the Chinese government has implemented the policy of family doctor contracting service62 63 and hierarchical diagnosis and treatment system64 in an attempt to improve the service capacity of primary healthcare institutions and alleviate the tension of medical resources in tertiary hospitals. However, the medical needs of patients are still not fully met.65 In the future, health system managers can optimise medical resource planning and management policies through m-health and telemedicine, training of personnel expertise and cross-sectoral cooperation.

    Limitations

    This study had certain limitations. To the best of our knowledge, this study is the first to use a qualitative approach to explore the barriers and facilitators to help-seeking behaviour in patients with OC. However, the results of this study should be interpreted with caution. First, although the 17 participants with different experiences provided sufficient information, a larger sample would be needed to replicate these findings in the future. Second, we did not interview family members and healthcare professionals, and the patients came from only one medical centre. Third, we did not conduct a longitudinal qualitative study of help-seeking behaviour for symptoms in patients with OC at different time points. Finally, the participants were from China, therefore, the results may not be fully applicable to patients from other cultures or healthcare systems. In the future, a multicentre collaboration could be undertaken to compare the effects of different cultural backgrounds or racial differences on help-seeking behaviour for symptoms in patients with OC.

    Implications

    The findings have three implications for researchers, clinicians and caregivers. First, Chinese women have a low level of perceived symptoms of OC, and health system workers should advocate for the importance of early prevention of OC. Second, cognitive factors affect help-seeking behaviour in patients with OC in many ways. Improving the stigma of patients with OC and promoting perceived benefits through the efforts of healthcare professionals has a greater potential to improve attitudes towards help-seeking. Third, practical factors that impede help-seeking behaviour are closely related to patients’ cultural backgrounds. Creating a favourable help-seeking environment and resource conditions for Chinese patients with OC requires the joint efforts from families, society and health policy-makers.

    Conclusion

    This study provides a detailed understanding of the barriers and facilitators to help-seeking behaviour for symptoms among patients with OC. Our findings suggest that there is an urgent need to improve Chinese women’s recognition of early symptoms of OC and awareness of the risk of cancer and pay attention to the influence of cognitive and practical factors on help-seeking behaviour for symptoms.

    Data availability statement

    Data are available on reasonable request.

    Ethics statements

    Patient consent for publication

    Ethics approval

    The study was conducted in accordance with guidelines of the Declaration of Helsinki and approved by the Independent Ethics Committee for Clinical Research of Zhongda Hospital, affiliated to Southeast University (Ref: 2023ZDSYLL205-P01). Informed consent was obtained from all participants before conducting the study. The participants were reminded that they were not required to respond to any inquiries that caused discomfort and that they had the option to terminate the interview at any point. All protected information about the participants, such as names, addresses and telephone numbers, was removed from the data. All electronic files and recordings were securely stored on an encrypted laptop computer accessible only to the first author.

    Acknowledgments

    We would like to thank all of the participants for their time and dedication to this study.

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    Supplementary materials

    • Supplementary Data

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    Footnotes

    • HY and YZ are joint first authors.

    • HY and YZ contributed equally.

    • Contributors HY: conceptualisation, methodology, investigation, formal analysis, data curation, writing–original draft, writing–review and editing and project administration. YZha: conceptualisation, methodology, formal analysis and writing—review and editing. YZhou: validation, formal analysis, writing—review and editing and supervision. HT: conceptualisation, formal analysis, writing—review and editing and supervision. DZ: validation and writing—review and editing. All authors read and approved the final manuscript. HY and YZha are the guarantors, have full access to all data in the study and have final responsibility for the decision to submit for publication.

    • Funding This study was supported by the Nursing Research Fund Project 2022 (grant num-ber KJZC-HL-202215) and Nursing Research Fund Project 2023 (grant number KJZC-HL-202317) of Zhongda Hospital Affiliated to Southeast University.

    • 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.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.