The perceived support received by women with breast cancer during the COVID-19 pandemic: A qualitative study

doi:10.21203/rs.3.rs-1425751/v1

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The perceived support received by women with breast cancer during the COVID-19 pandemic: A qualitative study

https://doi.org/10.21203/rs.3.rs-1425751/v1

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Background Women with breast cancer in Iran face challenges for which they require support. Yet the provision of support may have changed during the COVID-19 pandemic. Thus, the aim of the present study was to explore the perceptions of Iranian women with breast cancer in relation to the support they received during the COVID-19 pandemic.

Methods This study was qualitative in nature. Semi-structured interviews were conducted with Iranian women with breast cancer. The interviews were transcribed verbatim and analysed via conventional content analysis.

Results Participants (n=33) were Iranian women aged 29-58 years. All women included were married and were working in the role of being a housewife. Women's perceptions of breast cancer during the COVID-19 pandemic of support were identified under two main categories; Constructive support and Lack of support. Sub-categories related to constructive support included receiving support from family, peers, and nurses. Sub-categories related to lack of support included a perceived lack of spousal and sociocultural support.

Conclusion Anti-stigma interventions are suggested to increase both spousal and sociocultural support in this context. Further studies may usefully be conducted with the participation of Iranian women's family members in order to gain a deeper understanding of the support received and required by Iranian women with breast cancer during the COVID-19 pandemic and beyond.

Support

Women

Breast cancer

Qualitative research

Taking a global view from 2020, 22.8% of all cancers were diagnosed in Europe, 20.9% were diagnosed in the Americas, and 58.3% of all cancer deaths occurred in Asia [1]. Cancer is the third leading cause of death in Iran, where it is predicted that 184481 new cancers will occur by 2035 [2]. Breast cancer is the most common form of cancer among women in the world [3], and the fifth leading cause of cancer death in Iranian women [2]. Women's health with breast cancer is one of the major concerns of health systems worldwide [4]. Meanwhile, the increase in patients with breast cancer has created challenges for health services [5]. Moreover, the overlap of symptoms related to both COVID-19 and cancer also poses challenges for professionals when screening and making appropriate referrals for cancer patients [6]. The COVID-19 pandemic has also led to changes in the provision of care services for women with breast cancer [7]. As the challenges in caring for women with breast cancer in low- and middle-income countries (such as Iran) are even more complex due to increased economic barriers [8], it will be important to understand how these women may be best supported in a post-pandemic society.

In general, cancer patients faced a variety of behavioral and psychological challenges during the COVID-19 pandemic [9]. In particular, COVID-19 was an important psychosocial stressor for women with breast cancer [10]. This is because breast cancer mortality can be exacerbated by COVID-19, and women with breast cancer are more susceptible to and may therefore be more cautious of COVID-19 [11]. Yet, the COVID-19 pandemic has thwarted the provision of effective and supportive care for women with breast cancer, who are further at risk of infection due to immunosuppressive malignancy [12]. Unmet needs such as those related to fatigue, nausea and pain are unacceptable [13], and further call for understandings in relation to how support for these groups may be improved in future.

Globally, studies have explored women’s perceptions of life with breast cancer and their perceptions of breast cancer care during the COVID-19 pandemic. The results of one study conducted in Turkey reported that women who survived breast cancer were left with problems with their physical, emotional, cognitive and social functioning during the COVID-19 pandemic [14]. Israeli women with breast cancer during the COVID-19 pandemic had a good understanding of health, a high level of knowledge about COVID-19, and a moderately perceived threat of it [11]. Whereas a study in India found that women with breast cancer experienced psychological distress in response to the disease by having anxiety, depression, anger, and guilt [3]. Yet significantly, the results of a metasynthesis showed that having a supportive environment for women undergoing breast cancer treatment could improve their physical activity [15]. For example, receiving increased support from doctors, nurses and husbands added to improvements in health-related quality of life for Swedish women [16], and specific religious support improved the wellbeing of African American women who survived breast cancer [17].

Whilst reviews of the literature highlight the need for increased support for women with breast cancer in many geographical areas, qualitative studies exploring how Iranian women with breast cancer perceived the support given to them during the COVID-19 pandemic are limited. It considered that such studies are needed as the symptoms of breast cancer affect the role of women in the family and society in different cultural contexts [18]. Therefore, the aim of the present study was to explore the perceptions of Iranian women with breast cancer in relation to the support they received during the COVID-19 pandemic.

The present study had a cross-sectional design. Conventional content analysis, where concepts were identified from the data text inductively through open coding and the creation of categories was used as a means of describing this phenomenon, to increase understanding and to generate further knowledge in this area [19].

Setting

Participants were recruited from three teaching hospitals and oncology centers affiliated to Shahrekord University of Medical Sciences in Iran. Women in Iran typically attend these centers following a diagnosis of breast cancer for surgery, chemotherapy, and radiotherapy.

Recruitment of study participants

Our sampling strategy was purposive. Women were invited to participate verbally if they had a confirmed diagnosis of breast cancer for 12> months, a medical record, and a willingness to communicate with the researcher on the support they received during the COVID-19 pandemic. The researchers aimed to secure maximum variation in terms of variables such as age, level of education, stage of cancer and family history of breast cancer. Firstly, the medical records unit of the hospitals were collated, and the telephone numbers of all eligible women were obtained. The first author then made telephone calls to the women, inviting them to participate after stating the objectives and process of the research.

Data collection

Data were collected during the last three months of 2021. Semi-structured, qualitative interviews were used to explore the perceptions of Iranian women with breast cancer in relation to the support they received during the COVID-19 pandemic. Due to the conditions related to the COVID-19 pandemic, it was not possible to conduct interviews in person. Therefore, interviews were conducted via the WhatsApp social network either audio-visually or by audio only depending on the preference of the participant. Most of the interviews (n=28) were performed audio-visually. In depth interviews were semi-structured and conducted individually. Each lasted for approximately 45 to 55 minutes. Each participant was interviewed once. A total of 33 interviews were conducted. Our interview schedule consisted of the following questions: "Now that COVID-19 has become a pandemic, through whom or through what sources do you think you are being supported? ", "What is your understanding of the support of those around you?" and "What behaviors and contributions have affected you during the COVID-19 pandemic?". For more information, the interview continued with probing questions such as "What do you mean by that?" and "Is there anything you want to talk about?"; or phrases such as "Please explain more about this". Data collection ceased once data saturation, (i.e., when no new data was obtained) was achieved [19].

Data analysis

Prior to data analysis, each interview was recorded and transcribed verbatim. Subsequently, data collection and analysis were performed simultaneously. After reviewing the text of the interviews several times, meaning units were extracted from them. Codes were then derived from semantic units. Following this, the codes were organised into subcategories based on their similarities and differences. Eventually, following an iterative process of refinement and academic discussions, our final main categories were obtained in line with our conventional content analysis approach [19].

Credibility, dependability, confirmability, and transferability criteria were used to increase rigor [20]. In order to gain credibility, a constant juxtaposition with the subject and the data was maintained throughout the research team’s deliberations. The transcripts of the interviews and the findings were also made available to some women participating in the study to enable ‘sense checking’ and further triangulation. To increase data dependability, the perspective of an outside observer was also used (a researcher who was familiar with qualitative research methodology but was not a member of the research team). For confirmability, all activities were recorded and a report on the research process was prepared. For increased transferability of findings, the results were also validated by two non-participant women who had similar conditions to the participants.

This study included thirty-three participants. Participants were women aged 29–58 years. The majority of women (n = 17) were educated to diploma level. Whilst some participants (n = 16) had stage III cancer, the majority (n = 22) had no family history of breast cancer. All women included were married and were working in the role of being a housewife.

Our content analysis resulted in two main categories: Constructive support and lack of support. Our main category of constructive support included 3 sub-categories related to receiving support from family, peers, and nurses. Lack of support related to the 2 subcategories of lack of spousal support and lack of sociocultural support.

Main category: Constructive support

This main category captured participants individual feelings in relation to receiving constructive support during the COVID-19 pandemic. This constructive support was perceived to be received from family, peers, and nurses.

Sub-category: Family support

Women with breast cancer were supported by family members, including parents and siblings during the COVID-19 pandemic. They considered their families to be the most significant source of support.

"About 70% of my family members have given me morale and hope. They are always by my side. For example, now that my father does not work two days a week because of Corona, this is my strength of heart. "She was my mother. If I did not have this emotional support, I would be completely isolated."

"I told my siblings about the severe pain I had in my breast. They told me not to be afraid of getting Corona. We will come with you everywhere. It is okay that Corona is everywhere.”

Sub-category: Peer support

Participants enjoyed support from their peer groups both virtually and in person during the COVID-19 pandemic. Communicating with their counterparts appeared to offer them hope.

"Because of Corona, it is not possible to have a group meeting. WhatsApp has a group. We named it permanent friends, very well because we all have the same breast cancer. We no longer compare ourselves; we do not feel weak because we are all the same and have the same disease." "Maybe we can better support each other."

"When I communicate with other women who have breast cancer in the hospital, even though there is a mask on their face, but I understand their feelings and see that there are other people in the world like me, I hope for life that I am not the only one who has breast cancer."

Sub-category: Nursing support

Women with breast cancer perceived strong support from nurses during the COVID-19 pandemic. In this context, nurses were broadly perceived by participants to be supportive in providing them with both informational and psychological support.

"When I was on chemotherapy, the nurses' training and guidance helped me, the nurses gave me information about low-fat diet and walking and proper physical activity ... Now I thank the nurses for giving me the necessary information about the coronavirus, of course they explain about the care that a woman with breast cancer should take to avoid contracting the virus."

"My mother got Corona and died. At the same time, my mother was mourning. The mass inside my chest became very painful. I went to the hospital. I was both mourning my mother, and I was afraid of getting corona myself. "I was crying ... when I went to the hospital I was crying, the nurse spoke to me and said you came to the hospital for treatment, the important thing is that you get well and go home, if you give up you lose, your cancer should not defeat you"

Main Category: Lack of support

In this main category women with breast cancer express their feelings in relation to a lack of support during the COVID-19 pandemic. This lack of support was predominantly spousal and sociocultural in nature.

Sub-category: Lack of spousal support

Participants reported that following a mastectomy, they were often faced with a lack of support from their spouses. This lack of support caused feelings of powerlessness at times.

"When the doctor said I should have a mastectomy, my husband said he wanted to remarry. He said a woman who does not have breasts is no longer a woman! "She is no longer a woman, I felt helpless."

Sub-category: Lack of sociocultural support

During the COVID-19 pandemic, women were often subjected to unfounded compassionate social behavior by relatives, neighbors, and neighbors.

"I notice the weight of others' words and their pitying behaviors. I am crushed, my pride is broken. Because I see relatives and neighbors all talking about me with pity and compassion ... I heard our neighbor says about me that this woman has cancer "Because he goes to the hospital for treatment, it is possible that he will get Corona, I feel very sorry for him."

Some participants believed that because of common cultural misconceptions in both culture and society, they were trapped in the cultural taboo of cancer. As a result, they experienced negative cultural consequences such as enduring the burden of cancer in isolation.

"Culturally, it is difficult to relate to other people in the community about a patient with breast cancer! Chemotherapy causes changes in the body that make us patients look different. People think cancer means the end of life and let me tell you - breast cancer it is stigma and breast cancer are taboo in our country.”

"It's very difficult to talk about it with others. Even now, because of Corona, communication with other people in the community has become difficult, and in addition to what I said, it has actually been an advantage for them to isolate us women with breast cancer."

This study aimed to explore the perceptions of Iranian women with breast cancer in relation to the support they received during the COVID-19 pandemic. Constructive support was reportedly received predominantly from families including fathers, mothers, sisters and brothers. This may also be influenced by the fact that due to the COVID-19 pandemic, family members' working days were reportedly shorter and so they were better able to provide support during this time. Similarly, women with breast cancer in Singapore stated that family support was strong and a vital factor for them in coping with their illness [21]. In contrast, women with breast cancer in Nigeria experienced negative reactions from family members to chemotherapy and radiotherapy and did not receive adequate support from their families [22]. Our sample also reported being supported by other women with breast cancer during the COVID-19 pandemic through WhatsApp groups. The results of a study in Canada similarly showed that because women with breast cancer are in social isolation during the COVID-19 pandemic, their family relationships are disrupted, and they therefore also seek social support in this way [10]. The women in the present study had more time to communicate with their peers in person too. Although some peers wore face masks during the pandemic, the peer support received by them gave hope to some participants with breast cancer. This adds to the body of literature on hope being used as a coping mechanism in this context [23].

Participants here reported receiving information from nurses, which they perceived to be supportive in this context. Indeed, the informational needs of women with breast cancer are becoming increasingly complex in relation to prevention, etiology, diagnosis, clinical manifestations, treatment, prognosis and the impact of the disease on normal life [5]. Thus, it is significant that participants found such information to be supportive in nature. Moreover, women with cancer in this study received information about disease and physical activity during the COVID-19 pandemic from nurses. This type of information is required to aid women in decision-making as they seek information about treatment choices [24]. Also, having information about physical activity is essential for women with breast cancer as physical activity can improve their physiological and psychological function [25]. It is also important to ensure that information is given on the fact that physical activity is safe and accessible for women with breast cancer [26]. Here, participants also received information from nurses about the prevention of COVID-19. Thus, concerns about the impact of COVID-19 in this context may be significant and like those in Germany, Ireland, the United States of America (USA) and the United Kingdom (UK) [9].

Women in our study stated that they received emotional support from nurses when they were afraid of dying from COVID-19. The results of a study in Canada similarly showed that women with breast cancer experience psychological distress, are afraid of being hospitalized and fear contracting COVID-19 [10]. The results of a study in Italy further demonstrated that such fear of COVID-19 infection risk was a primary reason for not seeking further treatment for breast cancer [27]. Thus, emotional support may also be crucial in support of treatment-seeking in this context [28].

In addition to constructive support, participants experienced a lack of support during the COVID-19 pandemic. According to the women interviewed here, a mastectomy can be recognised by a spouse as a defect, leading to divorce and subsequent remarriage. Some also felt powerless due to the lack of support from their spouses. Indeed, the need for more spousal support in the reduction of stigma has also been found to be the case in China [29]. Furthermore, during the COVID-19 pandemic, Iranian women with breast cancer experienced a lack of sociocultural support. Conversely, women with breast cancer in India claim that the biggest support system for them has been society [3]. Chinese women with breast cancer also reported that social support was a factor in their empowerment after treatment [30]. In addition, Spanish women at all stages of breast cancer sought social support as a coping strategy [31]. Although in this study, women with breast cancer perceived a lack of social support during the COVID-19 pandemic, this type of support is important as it can result in improved mental health [32]. Findings of an alternate study in Iran also showed that good social support following a diagnosis breast cancer can improve women's health and be one of the most important factors in fighting the disease and feeling better for them [33]. Thus, tackling any remanent social stigmas in Iran will be important for the health and wellbeing of future Iranian women with breast cancer.

Similarly, women surviving breast cancer in China also understood the stigma associated with it [29]. The present study showed that support for women with breast cancer in Iran during the COVID-19 pandemic was deeply influenced by cultural elements. Thus, if cultural taboos on breast cancer in Iran are eased, it may be easier for women to receive support. Such an outcome requires extensive cultural interventions in the health system. These culture-based interventions are necessary to prevent the negative attitudes and stigmatic beliefs that prevail about breast cancer in Iran. Such interventions may usefully be progressed through cultural education for members of the community provided by the national media in the presence of oncologists.

In this study, women with breast cancer during the COVID-19 pandemic experienced both a lack of support and some elements of constructive support. Just as women received support from family, peers, and nurses, it is essential that they also receive sociocultural support during the remainder of the COVID-19 pandemic and beyond. Receiving sociocultural support, along with the constructive support may further enrich Iranian women with breast cancer in terms of support, so that they may enjoy an improved quality of life. Further studies may usefully be conducted with the participation of Iranians women's family members in order to gain a deeper understanding of the support received by and required by Iranian women with breast cancer during the COVID-19 pandemic and beyond.

Our relatively small sample size and the qualitative nature of the present study limits our ability to generalize findings. Nevertheless, the aim of qualitative research is not necessarily to achieve generalization [19]. Thus, our findings predominantly serve to contribute to the wider literature in this field.

Acknowledgements The researchers are thankful to all of the participants.

Author contribution All authors contributed to this project and article equally. All authors read and approved the final manuscript.

Funding This work had no external sources of funding.

Data availability Data are available by contacting the corresponding author.

Ethics approval and consent to participate This research was approved by the ethical committee of Shahrekord University of Medical Sciences (IR.SKUMS.REC.1400.108). To maintain ethical standards, participants were invited to give their informed written consent electronically. They were informed about the objectives of the study and told that they could leave the study at any time. While obtaining permission to record the interviews, they were also assured of the confidentiality of the information.

Consent for publication The article does not contain any individual’s details and consent for publication is not applicable

Competing interests The authors declare no competing interests.

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The perceived support received by women with breast cancer during the COVID-19 pandemic: A qualitative study

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Abstract

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