|Year : 2023 | Volume
| Issue : 2 | Page : 72-78
Challenges related to health care for Iranian women with breast cancer during the COVID-19 pandemic: A qualitative study
Vajihe Atashi1, Sepideh Mohammadi2, Zahra Salehi3, Zahra Shafiei4, Mitra Savabi-Esfahani5, Kobra Salehi5
1 Nursing and Midwifery Care Research Center, Department of Adult Health Nursing, School of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
2 Department of Nursing, Nursing Care Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran
3 School of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
4 Department of Operation Room, School of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
5 Department of Midwifery and Reproductive Health, Nursing and Midwifery Care Research Center, School of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
|Date of Submission||26-Oct-2022|
|Date of Decision||10-Mar-2023|
|Date of Acceptance||30-Mar-2023|
|Date of Web Publication||30-May-2023|
School of Nursing and Midwifery, Isfahan University of Medical Sciences, Hezar Jerib STR, P. O. Box: 81746-73461, Isfahan
Source of Support: None, Conflict of Interest: None
Introduction: COVID-19 has widely affected the health and care of people with chronic diseases, especially those with breast cancer. Because the health status of women with breast cancer in Iran has been unknown during the COVID-19 outbreak, we aimed to explore the challenges related to care of Iranian women with breast cancer during this pandemic. Methods: Using the qualitative content analysis design, 31 semi-structured face-to-face interviews were conducted from September 2020 to January 2021, with purposefully selected participants including 17 women with breast cancer, 7 health-care providers, and 7 family caregivers. Data were analyzed using the conventional content analysis. Results: Challenges related to health care for Iranian women with breast cancer can be classified into ten subcategories and three main categories. “Lack of specific functional and information resources,” “Limited equipment and active medical centers,” and “Intensification of the chemotherapy drug crisis” comprised the main category of “Inefficiency of care and treatment services.” “Lack of access to family caregiver,” “Ignoring the psychological burden imposed on patients,” and “Inadequate financial support from insurance organizations” were categorized as “Inadequate patient support.” “Avoiding receiving timely and appropriate treatment and care,” “Failure to accept self-responsibility for health,” “Misconceptions about COVID-19,” and “Ignoring breast cancer in the COVID-19 pandemic” comprised the subcategories of “ineffective self-care.” Conclusion: The present study provided a new understanding of the challenges regarding the health status of women with breast cancer during the COVID-19 pandemic. The findings could be used to develop effective interventions.
Keywords: Breast cancer, COVID-19, health care, nursing care
|How to cite this article:|
Atashi V, Mohammadi S, Salehi Z, Shafiei Z, Savabi-Esfahani M, Salehi K. Challenges related to health care for Iranian women with breast cancer during the COVID-19 pandemic: A qualitative study. Asian J Soc Health Behav 2023;6:72-8
|How to cite this URL:|
Atashi V, Mohammadi S, Salehi Z, Shafiei Z, Savabi-Esfahani M, Salehi K. Challenges related to health care for Iranian women with breast cancer during the COVID-19 pandemic: A qualitative study. Asian J Soc Health Behav [serial online] 2023 [cited 2023 Sep 23];6:72-8. Available from: http://www.healthandbehavior.com/text.asp?2023/6/2/72/377923
| Introduction|| |
COVID-19 has affected all aspects of people's life all over the world since December 2019. As the health-care system was not prepared optimally for the COVID-19 pandemic, it imposed many challenges for delivering quality care to patients., Therefore, it directly or indirectly affected the treatment approach for many patients with chronic disease, especially those with cancer.
Breast cancer is the most commonly diagnosed cancer and the leading cause of cancer death among women worldwide. Fifteen thousand people are diagnosed with breast cancer every year in Iran. With the diagnosis of more cases in recent years, breast cancer has been known as the most common cancer among Iranian women. More than 30% of patients are under 30 years old.
Women with breast cancer face many challenges that can ultimately lead to psychological and physical symptoms such as pain, anxiety, stress, burnout, and lymphedema, which may have long-term effects on their well-being. Studies during the COVID-19 pandemic have shown that these challenges were more than ever before in these patients. The pandemic created many problems for health systems to provide care for patients with breast cancer, including their treatment and screening., Early diagnosis to improve survival rate is the basis of controlling breast cancer. Appropriate treatment increases the recovery chance and the life expectancy of more than 90% of patients with breast cancer. However, some part of health services such as imaging facilities rapidly responded to the COVID-19 pandemic by canceling nonemergency services such as surveillance imaging, breast cancer screening, and some diagnostic tests such as breast biopsies. Moreover, some patients with breast cancer postponed or canceled diagnostic tests themselves because of the fear of getting the virus during the treatment process.
Furthermore, the results of two other studies showed that if patients with cancer who went under surgery or chemotherapy are infected with COVID-19, they will probably be exposed to intense infection, death, and admission to the intensive care unit (ICU)., In patients with cancer, the probability of having severe symptoms is twice, the probability of admission to the ICU is three times more, the probability of needing a ventilator is 2.7 times higher, and the probability of death is twice more than other patients infected with COVID-19.,,
Awareness of these issues has significant psychological effects on patients with breast cancer. Fear has interfered with their treatment and follow-up care. The fear of COVID-19 can cause many psychological distresses, which may increase more strongly in vulnerable groups; patients with breast cancer experience feelings of isolation and even guilt in relation to their caregivers. Patients are afraid that their caregivers will get infected with COVID because of close contact with them and not observing physical distance. Quarantine, which was recommended as a way to prevent disease during the COVID-19 pandemic, may have caused anxiety, irritability, and depression.
Another challenge is the availability of appropriate setting and staff to perform long surgeries and intensive care beds that may directly affect the decision-making about continuing the treatment of operable breast cancer cases during the prevalence of COVID-19, and therefore, the patient's health may be at risk.
The health team members are responsible for providing appropriate care for patients and their family. Therefore, it is necessary to provide more in-depth insight about health-care conditions and to explore the experiences of women with breast cancer, their families, and the treatment team during this crisis. It is necessary to mention that the main part of cancer research programs around the world, including Iran, have also been postponed due to funding for the COVID-19 pandemic as a global priority.,, Therefore, strategies for breast cancer burden should be considered a health policy priority in future programming and research. However, the challenges of Iranian women with breast cancer during the COVID-19 pandemic are not clear yet and the studies in this field are very limited. On the other hand, the crisis varies in different countries because of the difference in health systems and sociocultural context. Hence, studying the challenges of taking care of women with breast cancer is possible only through the study of individual experiences. As a result, the appropriate approach would be based on qualitative research. We aimed to explore the challenges of taking care of Iranian women with breast cancer during the COVID-19 pandemic through a qualitative design.
| Methods|| |
A qualitative content analysis design, using semi-structured interviews, was selected to better understand the challenges related to health care of women with breast cancer during the COVID-19 pandemic.
This study was conducted in Anahid clinic affiliated to Isfahan University of Medical Sciences. Anahid clinic was selected as the most comprehensive breast disease clinic, because it provides all services such as breast cancer screening, periodic checkups, determining cancer risk, all up-to-date diagnostic proceedings and consulting for patients with breast cancer and their family members, as well as training during treatment to deal with treatment complications, and rehabilitation for more than 100,000 women annually.
The participants were 17 women with breast cancer, 7 members of the treatment team, and 7 family caregivers. The inclusion criteria for participation were patients with at least 1 year from definitive diagnosis of breast cancer who were under treatment, the health-care providers and family caregiver who had work experience of more than 1 year with these patients, ability to speak and communicate, no mental or psychological disorders (through the review of the patients' medical record), and agreement to collaborate and participate in the research. Unwillingness to continue participating in the study was the exclusion criterion. In purposive sampling, researchers select participants with maximum variation respecting their work experience, organizational position, age, sex, and educational level.
Data were collected through semi-structured interviews from September 2020 to January 2021. This time coincided with the third wave of the COVID epidemic in Iran, where the daily death reached 180 people. Place and time of interview were determined by the participants. Thirty-one interviews were conducted, 4 interviews took place in a researcher office, and 27 interviews took place at a private room in Anahid clinic. The interviews lasted for 30–90 min depending on the participants' conditions and experiences. All interviews were conducted by one of the researchers (PhD in nursing). To evaluate the interviews, two pilot ones were conducted and required changes were made in the questions. In the interview, the participants were encouraged to share their experience about challenges related to health care during the pandemic. For instance, the health-care staff were asked: “What challenges have you faced in taking care of these women?”
The patients were asked: “Talk about your experiences of challenges that occurred in your treatment stage or supportive care during the pandemic?” The probing questions were based on the participants' experience to achieve deeper information and clarify the concept. “Can you provide more explanations about this? Why? and “How?” were used to further explore participants' experiences. Interviews were audio-recorded using a digital voice recorder. Sampling was continued until repetition of previous data and data saturation, i.e., when the new data became repetitive and there were no further new findings to add to the existing data (data saturation).
In this study, Graneheim and Lundman's inductive conventional content analysis approach was applied for data analysis. Analysis was done concurrently with data collection and all the recorded interviews were transcribed until maximum 24 h after recording by the first author.
Both the second and sixth authors listened carefully to the two first audio files and read its transcript several times to obtain a general understanding about its main ideas and immerse in the data. The researcher selected the meaning unit and summarized meaning units from the two first interviews independently; then, they discussed them and resolved the disagreement. In the next step, the first author analyzed 17 other interviews as follows: first, the author continued to reach comprehensive perception through listening several times and reading the transcribed files. In the next step, the whole transcriptions were divided into smaller parts and each small part was called a meaning unit. Each identified meaning unit is labeled with a code. Then, the codes were grouped into subcategories based on their similarities and interrelationships. Subcategories were similarly grouped into larger categories based on their interrelationships and similarities.
Lincoln and Guba's trustworthiness criteria were applied in this study, namely credibility, dependability, transferability, and confirmability. Credibility was ensured through member checking. Confirmability was examined through audit trials. To reach data transferability, sampling was done with maximum variation and providing clear information about study participants and setting. Dependability was ensured through external peer checking.
The Ethics Committee of Isfahan University of Medical Sciences, Isfahan, Iran, approved this study (code: IR.MUI.RESEARCH.REC.1399.469). Permissions for the study were received from the Research Administration of Isfahan University of Medical Sciences and provided to the authorities of the study setting. The participants were aware of the aims and method of the study and written informed consent forms were obtained from all participants. They were ensured of data confidentiality and their freedom to leave the study at will.
| Results|| |
The participants were 17 women with breast cancer, 7 health-care providers, and 7 family caregivers. [Table 1] shows the characteristics of the participants.
The challenges of health care for Iranian women with breast cancer were grouped into three main categories, namely “Inefficiency of care and treatment services,” “Inadequate patient support,” and “Ineffective self-care.”
Inefficiency of care and treatment services
Participants highlighted the inefficiency of care and treatment services. This category had three subcategories, namely lack of specific information and functional resources, limited equipment and active medical centers, and intensification of the chemotherapy drug crisis. Most of the women could not continue their screening, chemotherapy, and radiotherapy according to their treatment plan. Their treatment was delayed.
Lack of specific information and functional resources
During the COVID-19 pandemic, there was a need to change treatment protocols and developing new educational programs specific to this situation for women with breast cancer. However, the lack of appropriate guidelines led to some challenges for the patients and health-care providers. Participants noted that there was no standard protocol for follow-up and treatment during the pandemic.
”…We do not have even a protocol or guideline on how to handle the patients with cancer in case the COVID-19 pandemic continued.” (P30)
The participants' experiences revealed that the patient and health-care providers had problems in accessing alternative health-care programs in case of a long-lasting pandemic. Deficiency in patients' education, limited access to qualified educational materials, and insufficient health-care information provided to patients was stated by some participants. They also noted that the health-care system had poor performance in providing informational resources to physicians related to early diagnosis and treatment during the COVID-19 pandemic. A participant said:
”I have breast cancer and do not know what to do in this situation; there are no educational programs about it.” (P5)
Limited equipment and active medical centers
The participants mentioned some problems such as lack of hospital beds during the pandemic, inadequate health-care facilities for patients, disrupted treatment process due to equipment defects, and closure of some medical centers as a result of the pandemic that affected the quality of their care significantly. A participant stated that:
”Some patients who went to other cities for their treatment faced more challenges and difficulties because according to the new health guidelines, there were some limitations for travelling during the pandemic.” (P27)
Intensification of the chemotherapy drug crisis
For many years, and as a result of sanctions and the black market of drugs, there has been a crisis of special and rare drugs in Iran, especially chemotherapy drugs, which has intensified during the COVID-19 pandemic. The treatment system has not been able to manage this crisis properly. Furthermore, during the COVID-19 pandemic, the health-care sector focused on controlling the epidemic, and as a result, crisis of chemotherapy drugs has intensified; therefore, patients' access to special drugs and chemotherapy during this period has become more limited and has turned it into another challenge for patients.
A participant said: “in a three-week interval, I bought my mother's ampoules at a much higher price. Now, for her next chemotherapy session, I cannot find her medicine at all. It is really bad that in this COVID-19 pandemic, we must also worry about lack of medicine.”(P22)
Inadequate patient support
Another main category was inadequate patient support. Currently, during the COVID-19 pandemic, the participants stated that they have not received expected support from family caregivers because they were not accessible. The psychological burden imposed on the patient and family members was missed and financial support from insurance organizations was not adequate.
Lack of access to family caregiver
The patient with cancer and under chemotherapy needs help even with the daily routines such as cooking, cleaning, and personal health. They are sometimes unable to do even the simplest housework and need special support from family members. However, now with the COVID-19 prevention programs, even the family members do not visit each other. As a result, these patients are deprived of family caregiver support, especially physical support.
”During my mother's treatment, I did the shopping; sometimes my aunt helped us in cooking or housework. Now, these visits have decreased or even stopped in this special situation. Therefore, the conditions made everything hard for my mother who is under chemotherapy” (P20)
Ignoring the psychological burden imposed on the patient
Patients have specific psychosocial needs during this period. They believed that their needs had been neglected.
Patient's psychological support is a basic part in recovery of women with breast cancer. The participants stated that they had to stay at home, which has led to social isolation, decreased emotional supports, and resulted in stress, restlessness, and fear of death in loneliness. A participant said:
”Now, I don't go out and no one comes to visit me; I am alone and I am afraid to die in loneliness; I cry without any reason. Now, it is two months that I can only sleep with sleeping pills.”(P4)
Inadequate financial support from insurance organizations
The participants stated that insurance organizations do not pay for imported drugs and they pay only Iranian drugs' costs; this is the case when Iranian drugs are not suitable for many patients or they did not have a favorable effect. Another problem was that the patients must often pay the cost of chemotherapy drugs out of pocket, and then, they can deliver the payment documents to their insurance organization. There were time wasting and offending bureaucracy for delivering the documents and getting part of the costs from insurance organizations. It became a challenge for the patients and their family caregivers. A participant stated: ”…for part of the costs, it needs standing in lines for a long time and going from one room to another and this leads to be exposed to corona virus and as a result, being a virus carrier and transferring that to my wife.” (P18)
Self-care has an important role in controlling and managing the disease. According to the participants' experience, avoiding receiving timely and appropriate treatment and care, failure to accept self-responsibility for health, misconceptions about COVID-19, and ignoring breast cancer during the COVID-19 pandemic resulted in ineffective self-care.
Avoiding receiving timely and appropriate treatment and care
In the COVID-19 pandemic, fear of going to medical centers led the women with breast cancer to use ineffective treatments such as cupping, leech therapy, and herbal teas instead of visiting the doctor and receiving appropriate treatment. Therefore, they referred to the oncologist only after advanced stages of cancer. One of the oncologists said: ”Some patients refer after raw-veganism, leech therapy, and drinking herbal teas when they are at stage 4 of breast cancer. I ask them: weren't there any risk of getting the virus for example in traditional treatment centers?!” (P27)
Failure to accept self-responsibility for health
Patient's motivation for self-care behaviors during the pandemic depends on the person's responsibility acceptance, but some unnecessary risky behaviors (traveling, haircutting, skin care, and shopping), and paying no attention to COVID-19 preventive programs, showed that they were unable to accept self-responsibility for personal health.
”Getting the history from my patients, all travelled to north of Iran, they did skin care and went to hairdresser's; but they did not come to the clinic with the excuse of COVID-19.”(P28)
Misconceptions about the COVID-19
According to the participants, personal beliefs about COVID-19 led to whether or not to do self-care. Incorrect beliefs, such as being infected by COVID-19 virus in doctor's office or hospital, refused the following the treatment schedule. A radiotherapist said: ”The patient says that she did not come to the hospital because of COVID-19 pandemic. They think that whoever comes to the hospital will be infected by the Coronavirus.” (P31)
Ignoring breast cancer in the COVID-19 pandemic
Although most of the participants in this study knew that they should go for imaging, scanning, or follow-up visits, they preferred to give up their treatment during the COVID-19 pandemic as they felt infected with COVID-19 more dangerous than their current breast cancer. A participant said: ”All patients felt having tumors since months earlier, but they did not refer to the hospital because of COVID-19 prevalence.”(P28).
| Discussion|| |
The aim of this study was to explore the challenges related to health care for Iranian women with breast cancer during the COVID-19 pandemic. Three main challenges were inefficiency of care and treatment services, inadequate patient support, and ineffective self-care.
It is obvious that any delay in cancer treatment results in metastasis or worse conditions of the patient and finally early death. According to the participants' experience, many issues result in unfavorable health-care services during the COVID-19 pandemic. A study in Italy showed that optimizing cancer treatment and care has suddenly become a challenging and crucial issue. Delays from health-care services in all stages of breast cancer treatment and care were reported in another study. In line with our findings, a study examined this subject under the supervision of credible medical associations from England, European countries, and the USA, and the results have shown that these countries face challenges such as resource limitation and lack of prioritizing strategies for patients with breast cancer during the COVID-19 pandemic. In the pandemic, the treatment team focused on COVID-19, patients with breast cancer were ignored, and hospital beds and caregiver staff were limited. Because of this limitation, using expert opinion of representatives from multiple cancer care organizations to categorize patients with breast cancer into priority levels for urgency of care across all specialties, it has been proposed to classify patients with breast cancer in priority levels A, B, and C for care necessity in all services in the US. Based on these levels, patients receive urgent treatment, treatment before the end of the pandemic, or treatment after the pandemic. According to the availability of hospital resources and intensity of COVID-19, the criterion can be used for countries during COVID-19 prevalence.
Our findings also revealed inadequate patient support as the second main challenge. Physical, psychological, and social support of patients with cancer is considered necessary for their health care; however, the present study's participants mentioned supportive care decrease on the family side during COVID-19 pandemic. Results of a study on patients with cancer showed disorders such as depression and stress increased during COVID-19. Therefore, informing the family members and caregivers of patients with cancer about their critical role in the physical and psychological support of patients and paying attention to patients even through video calls are effective. A study in Canada revealed that most of the participants (with breast cancer) experienced at least one stressor related to the COVID-19 pandemic. Since feeling alone can have irreversible psychological consequences for patients during this pandemic, the studies proposed some recommendations such as creating peer groups to sympathize with these women., It should not be forgotten that in pandemic situations, Telehealth and remote patient monitoring may be an ideal alternative.
We also found from the participants' experience that they do ineffective self-care. The participants have not visited the medical centers because of fear of being infected with COVID-19 and some of them used traditional medicine. In many countries, especially countries with traditional backgrounds, herbal teas and handmade medicines have been used a lot, and in some cases, they resulted in irreversible complications because of not receiving appropriate treatment in time. In low- and middle-income countries, hiding cancer in the shadow of much attention to COVID-19 and not paying attention to preliminary symptoms of cancer or fear of visiting medical centers for diagnosis have been reported. Our finding showed that the women had no adequate information about self-care and prevention of COVID-19. They were afraid of searching information about COVID-19. However, the patients with cancer are more exposed to virus and are supposed to have intense complications; therefore, informing about COVID-19 is an undeniable necessity.
Strengths and limitations
This is among the handful of studies in Iran that explored the challenges regarding health care of Iranian women with breast cancer. Participation of patients, family caregivers, and different health-care providers was the main strength of the study.
The study heavily responds to the health-care system in Iran that is radically different from other parts of the world, and therefore, its generalizability is limited.
| Conclusion|| |
This study suggests the multiplicity of the challenges related to health care for Iranian women with breast cancer including inefficiency of care and treatment services, inadequate patient support, and ineffective self-care. The findings provide us a new understanding of the challenges regarding the health status of women with breast cancer during the COVID-19 pandemic. The findings could be used to develop effective interventions. The challenges were in a wide range demanding comprehensive attention of public health policymakers and health-care institutions to improve the current status and overcome these challenges.
Our research was supported by the Isfahan University of Medical Sciences. We would like to thank all the respectful individuals who helped us in this study.
Financial support and sponsorship
This study was supported by the Isfahan University of Medical Sciences study (Research Code: 199367).
Conflicts of interest
There are no conflicts of interest.
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