Barriers and Facilitators of Breast Cancer Screening amongst Culturally and Linguistically Diverse Women in South Western Sydney: A Qualitative Explorative Study

Breast cancer is the most common cause of cancer amongst Australian women and the second most common cause of cancer mortality. Despite the proven effectiveness of early intervention, screening rates remain subpar across many regions in New South Wales (NSW). Screening rates are particularly low within the culturally and linguistically diverse (CALD) area of South Western Sydney (SWS). The objective of this study was to qualitatively explore barriers and facilitators to breast screening from the perspectives of CALD women from SWS. CALD women aged ≥40 who resided in SWS were invited to participate in a semi-structured interview to explore barriers and facilitators to breast cancer screening. Interviews were recorded, transcribed verbatim and analysed thematically to identify recurring patterns in the data. Sixteen women from CALD backgrounds participated. Women in this study reported absence of symptoms, fatalistic beliefs and embarrassment during the procedure to be the primary reasons for reluctance to screen. Lack of general practitioner (GP) endorsement, transport issues and pain associated with the procedure were also reported as additional barriers to screening. Common facilitators to screening included encouragement from family and friends, family history of cancer and media adverts. CALD women have distinctive barriers to mammography, which lead to poor breast screening participation rates. Opportunistic health promotion in this area is warranted and may lead to better health outcomes amongst this population.


Introduction
Breast cancer is the most common cancer among Australian women, representing 28% of all cancers, and is the second highest cause of cancer related mortality amongst females [1][2][3]. By age 85, Australian women have a~1 in 7 risk of diagnosis [1]. Treatment is costly, with over AUD 800 million spent on therapy in 2013 [4].
An effective way to mitigate some of the health and financial impacts of breast cancer is through screening programs [4,5]. BreastScreen Australia offers free biennial mammograms to women aged 50-74 and a sharp decline in breast cancer-related deaths has been recorded since the introduction of this program [5,6]. Several studies have demonstrated that mammograms are effective in recognising early-stage cancer, while others found a proportion of late-stage cancers are attributable to failure to participate in screening [7][8][9]. If breast cancer is detected through screening programs, Australia's universal healthcare scheme "Medicare" covers the cost of treatment, thereby ensuring access and affordability of care [10,11]. Despite the effectiveness and affordability of early detection and intervention, mammographic participation rates are suboptimal, with~60% of women aged 60-69 and only 50% of women aged 50-54 screening in 2015-2016, well below BreastScreen Australia's target rate of 70% [2,11,12]. South Western Sydney (SWS) has a very low screening 2 of 13 rate of 46.3%, ranking it the lowest in NSW [2,13]. Therefore, a number of eligible women with potential malignancy may be diagnosed when their disease has progressed, with resultant poorer outcomes [14].
One reason for this particularly low participation rate may be the region's large culturally and linguistically diverse (CALD) population, with~52% of the population born outside Australia and 64% speaking a language other than English at home [15][16][17].
No studies have specifically examined this region, with only a few attempting to explain these across the broader Australian population [18][19][20][21]. These studies reported that CALD women were less aware of cancer screening and more likely to report not understanding the procedure purpose, with only 62.9% of Arabic women reporting they had heard of mammography [19,21]. Women also reported they were "feeling well" or had "no family history", meaning there was no need to screen, reinforcing the importance of community education about the need for screening [13,19].
Even when CALD women do understand the mammographic procedure, they may avoid it because of cultural beliefs and values, including modesty and fatalistic beliefs, or due to limited English proficiency [13,18,20]. CALD women also report similar issues to the general population, with time constraints and appointment availability both reported barriers to screening [13,21].
No studies examining barriers and facilitators to screening participation have been conducted among the multicultural population of SWS, where screening remains low despite learnings from research elsewhere in Australia with CALD women [19][20][21]. Investigation with women from this highly multicultural area is warranted to investigate reasons for low screening rates. The objective of this study was to qualitatively explore barriers and facilitators to breast screening from the perspectives of CALD women from SWS, and ultimately, develop solutions for the public health issue of suboptimal rates of screening attendance in CALD populations.

Study Design
A qualitative approach was selected to allow participants to discuss in-depth the barriers and facilitators that influence participation in timely breast screening [22]. This approach allowed researchers to participate in naturalistic conversation, understand perspectives and generate descriptive narratives [23].

Participants and Recruitment
Inclusion criteria were women ≥40 years of age eligible for the BreastScreen program, who were from a CALD background (defined as those who were born overseas and spoke a language other than English at home) and resided in SWS [24].
Recruitment occurred through distribution of recruitment flyers at community health facilities and at community events. Snowball sampling was used, where contacts of initial participants were leveraged to recruit new additional participants meeting the eligibility criteria.

Data Collection
Participants were contacted by a member of the research team (JJ) to arrange an in-depth, one-on-one, 30-45 min semi-structured interview either in person or via telephone. Written, informed consent was sought before the interview. A semi-structured interview schedule was developed from a previous study that investigated perspectives on breast screening amongst women who self-identified as obese [25]. The interview schedule included questions on previous breast screening participation, including barriers to screening, screening experiences and knowledge surrounding the purpose of mammography (Appendix A).

Analysis
Interviews were digitally voice recorded, then transcribed verbatim. Transcripts were de-identified with any identifiable information (e.g., workplace, address) being replaced with pseudonyms. Data were coded in Quirkos (https://www.quirkos.com accessed on 19 February 2019 (Quirkos, Edinburgh, UK), a software tool designed for management of qualitative text by JJ. Coded data were then clustered and grouped into broader themes and categories, which were regularly revisited by the whole research team (JJ, FM and KM). Participant excerpts were arranged in tables according to themes/categories and labelled by the women's CALD background, age and participant number (e.g., Lebanese, 53, P1 = A Lebanese woman aged 53 years who was participant number 1).

Ethics Approval
Ethical approval for this study was provided by the Western Sydney Human Research Ethics Committee (H12805). Written consent was obtained from participants before commencing interviews.

Participants
Sixteen women participated, including 11 women who had previously attended breast screening. Participant demographics are outlined in Table 1. Recurring themes were classified into several categories: (1) healthcare and illnessrelated experiences influencing screening; (2) cultural barriers towards screening attendance; (3) personal barriers towards mammography; and (4) general facilitators to screening. These categories are now explored.
A summary of barriers and facilitators is provided in Figure 1.
Recurring themes were classified into several categories: (1) healthcare and illnessrelated experiences influencing screening; (2) cultural barriers towards screening attendance; (3) personal barriers towards mammography; and (4) general facilitators to screening. These categories are now explored.
A summary of barriers and facilitators is provided in Figure 1.

Healthcare and Illness-Related Experiences Influencing Screening
Almost all (88%) participants cited that previous healthcare experiences played an important part in their decision to screen (as per Table 2). Personal cancer experiences or those of family and friends were identified by participants as motivators to screen. Several women related how watching their friends experience breast cancer reinforced the importance of screening to detect cancer as early as possible (excerpts 2.1 and 2.2). One participant, however, outlined the experience of having a neighbour who was diagnosed with late-stage breast cancer despite having regular mammograms as being a deterrent towards mammography (excerpts 2.3). The participant reported that this experience had overwhelmed her with feelings of helplessness in the face of cancer so that she no longer felt motivated to attend screening. Many women identified that having a family history of cancer also encouraged them to attend screening as they were aware that they were at increased risk of breast cancer (excerpts 2.4 and 2.5). One participant, however, mentioned that a lack of family history was the reason she consciously chose to delay screening (excerpt 2.6).
Multiple women described positive experiences of the procedure itself, with these primarily attributable to the professionalism and sensitivity of staff conducting mammograms (excerpt 2.7). Two women, however, reported the "rough" nature of particular staff members as being a barrier to reattending future screening (excerpts 2.8 and 2.9). Several women also described mammograms as being physically uncomfortable; however, most agreed the discomfort was tolerable and would not prevent them from screening again.

Healthcare and Illness-Related Experiences Influencing Screening
Almost all (88%) participants cited that previous healthcare experiences played an important part in their decision to screen (as per Table 2). Personal cancer experiences or those of family and friends were identified by participants as motivators to screen. Several women related how watching their friends experience breast cancer reinforced the importance of screening to detect cancer as early as possible (excerpts 2.1 and 2.2). One participant, however, outlined the experience of having a neighbour who was diagnosed with late-stage breast cancer despite having regular mammograms as being a deterrent towards mammography (excerpts 2.3). The participant reported that this experience had overwhelmed her with feelings of helplessness in the face of cancer so that she no longer felt motivated to attend screening. Many women identified that having a family history of cancer also encouraged them to attend screening as they were aware that they were at increased risk of breast cancer (excerpts 2.4 and 2.5). One participant, however, mentioned that a lack of family history was the reason she consciously chose to delay screening (excerpt 2.6).
Multiple women described positive experiences of the procedure itself, with these primarily attributable to the professionalism and sensitivity of staff conducting mammograms (excerpt 2.7). Two women, however, reported the "rough" nature of particular staff members as being a barrier to reattending future screening (excerpts 2.8 and 2.9). Several women also described mammograms as being physically uncomfortable; however, most agreed the discomfort was tolerable and would not prevent them from screening again.

Cultural Barriers towards Screening Attendance
Most (75%) participants highlighted the importance of cultural factors in influencing screening practices (as per Table 3). Several women emphasised the importance of maintaining modesty in their culture and expressed embarrassment over undressing for a mammogram (excerpts 3.1, 3.2 and 3.3). These women acknowledged that this discomfort and embarrassment caused them to delay screening appointments (excerpt 3.4). An overall preference for female radiographers over male radiographers was reported by multiple women, with many stating that the all-female staff at BreastScreen made them feel more comfortable during mammograms (excerpt 3.5). She wasn't understanding that I was hurting. She said, "Gee, you're a whinger," and I thought, "Excuse me." I said, "It hurts." She says, "You're not the only one." I know I'm not the only one, but it hurts. (Italian woman, 67-Participant 5)

2.9
No one is doing it in Liverpool because . . . . they do it rough. . . . and it doesn't matter how many letters they send me. I'm not gonna go do it. (Lebanese woman, 53-Participant 1)  Most women in this study agreed language barriers were not an issue towards screening. Participants said information was available in their language and if needed, children accompanied them for interpretation (excerpts 3.6 and 3.7). One participant, however, expressed that her minimal English skills prevented her from completely understanding the procedure (excerpt 3.8).
Low health literacy was also apparent among several participants and appeared to influence their attendance at screening programs. For example, one participant mentioned that whilst she is reasonably proficient in English, she found the medical jargon associated with screening difficult to comprehend (excerpt 3.9). Another woman said her low knowledge surrounding mammograms was likely due to mammograms not being performed in her home country. Further, several women said that as they currently have no symptoms, they were not required to attend mammograms (excerpt 3.10).
Many women said there was a general lack of awareness of screening within their community and that there was a need to directly deliver the message to these women either through cultural events or via general practitioners (GPs) (excerpts 3.11 and 3.12).
The issue of having to gain permission from her husband to screen was also raised by one participant. The participant mentioned that a discussion with her husband and his approval were mandatory before she could participate in mammography (excerpt 3.13).
Distrust in Western medicine was raised as a cultural barrier towards screening, with several women preferring the use of complementary therapies and natural medicine to prevent breast cancer (excerpt 3.14).

Personal Barriers towards Mammography
Several personal barriers were outlined by women as reasons for why they found screening challenging (as per Table 4). One woman mentioned that a blood clotting disorder diagnosis prevented her from screening (excerpt 4.1) with the fear of bleeding post-mammogram leading her to be cautious of screening as it may result in illness or hospitalisation. Another participant reported that normal results in previous mammograms had caused her to stop attending future mammograms (excerpt 4.2). Many of these women reported performing self-exams, stating that they would only consider screening if they found something suspicious (excerpts 4.3 and 4.4). Only one participant recognised that a self-exam could not wholly substitute examination by a medical professional or formal imaging (excerpt 4.5). Several women also cited old age as a reason to stop screening (excerpt 4.6). Such participants embraced the idea that screening was useful when they were young, but no longer required it as death was inevitable. Some women reported that fear of being diagnosed with breast cancer and being confronted with thoughts of death had caused them to delay screening (excerpts 4.7 and 4.8). Many women in this study outlined fatalistic beliefs regarding the inevitability of death to be the reason why they considered screening unnecessary (excerpt 4.9).
Multiple structural barriers were also identified by women to be the reason why they found it difficult to screen. Some said it was difficult to find parking around the BreastScreen clinic, while others reported they could not drive and did not want to bother others to take them (excerpts 4.10, 4.11 and 4.12). Two women reported that many of their family and friends found it difficult to make time for screening in their busy daily schedules (excerpts 4.13 and 4.14).

General Facilitators to Screening
Participants outlined a number of factors that encouraged them to screen for breast cancer (as per Table 5). For example, all of the study participants reported the importance of their general practitioner in firstly convincing them to screen and reminding them when mammograms were due (excerpts 5.1, 5.2 and 5.3). Many women said the letters sent from BreastScreen reminded them to screen; however, most agreed they would have eventually screened regardless (excerpts 5.4 and 5.5). For women who had already chosen not to screen, these reminders neither encouraged nor changed their opinion on screening. That would be a good idea too like if the ladies go in group, maybe they will support each other. They will think, "Okay, we have some support with us." (Pakistani woman, 53-Participant 16)

5.11
I came across one of my friend who had-recently who has-diagnosed with cancer. Since then, I'm more aware of it. In addition to that, on TV, Pink Ribbon and stuff-was a campaign also promote me to also raise my awareness of this.

5.15
Social media is already playing some role, but I think they should play more than they're doing at the moment. (Pakistani woman, 53-Participant 16) Support from family and friends also facilitated screening. Many women reported that having discussions with friends about breast cancer and screening helped to remind them to attend mammograms regularly. Several women reported that reminders from their children or siblings motivated them to screen (excerpts 5.6, 5.7 and 5.8). One woman said the principles of looking after your health were enforced by her parents at a young age, which motivated her to have mammograms (excerpt 5.9). Social support from peers was also mentioned as a facilitator. Some women outlined that screening as a group with friends would alleviate some of their anxiety around screening and encourage them to go regularly (excerpt 5.10).
Several women said that media around screening such as adverts from BreastScreen encouraged them to participate. Many women mentioned that hearing stories of young celebrities, such as Kylie Minogue, being diagnosed with cancer, encouraged them to screen (excerpt 5.11). Some participants felt media could play a bigger role in encouraging breast screening by sharing the stories of regular people diagnosed with cancer (excerpt 5.12). These participants said by having regular people share stories, the experience would be more relatable and have a stronger influence on mammogram attendance. Some women also suggested that social media could be useful in raising awareness of screening among younger women, who could then persuade their mothers to screen (excerpts 5.13, 5.14 and 5.15).

Discussion
Our study aimed to qualitatively investigate the barriers and facilitators to breast screening among culturally and linguistically diverse women in the highly multicultural region of SWS. Numerous barriers and facilitators that influence participation in breast screening within this community were identified.
Several facilitators were common to women in the general population. These included encouragement by friends and family, the media and having a regular doctor [26]. Awareness of increased cancer risk due to a previous history of breast problems or positive family history of breast cancer found here were also cited as facilitators to breast screening previously [26]. Common barriers identified included lack of time to attend appointments, fear of the pain of the procedure and lack of awareness of the service and how to access it [27].
As well as these common facilitators and barriers, several distinctive issues were also raised. Most women we spoke to expressed feelings of embarrassment around exposing their breasts for a mammogram and cited the importance of modesty within their culture as a factor for reluctance to screen. While some of these women identified having all-female staff at BreastScreen was sufficient to make them feel comfortable, others indicated that the procedure was humiliating regardless of the radiographer's gender. Embarrassment and discomfort often led to negative screening experiences, which were occasionally compounded due to "rough" and insensitive physical manhandling by staff. These findings are similar to existing literature examining mammography utilisation by minority women in the United States (US) and research conducted amongst different cultural populations in South America [28][29][30]. It is therefore important to recognise the embarrassment experienced by many CALD women during mammograms, even when conducted by a female radiographer. A strategy to address this discomfort may be to increase discussion of screening in social groups and GP consults to normalise and increase familiarity with the procedure. Cultural competency training among radiographers may also be warranted.
Several women in this study had a limited understanding of mammography, which subsequently influenced their screening participation. Many women perceived they were not required to screen as they were asymptomatic, or that self-examination could replace formal screening. This finding indicates that both healthcare providers and media advertisements need to emphasise the importance of attending screening irrespective of symptoms and self-examination. This lack of understanding of the procedure was also exacerbated for women in our study due to language barriers and the fact mammograms were not performed in their home country. While all our participants could speak and understand basic English, the medical jargon associated with screening was difficult to comprehend, particularly for women that had never experienced mammograms. This association between suboptimal English proficiency and low breast screening rates is consistent with previous research about CALD women's screening practices [29,31]. Overall, these findings suggest a culturally sensitive approach is required to increase awareness of the importance of mammograms among CALD communities. A possible strategy may be to deliver messages directly to communities through social events and culturally competent health support workers, ensuring that the message is understood. An approach may be to recruit and train women who already participate in screening as community social workers, in order to support and change the attitude of other women towards screening.
Another novel finding of this study was that encouragement by a GP was crucial in supporting CALD women to screen. Women perceived GPs as influential figures vital for informing them and reminding them to screen. Several women indicated advice from their GP was valued above media advertisements and health promotion campaigns, suggesting that promoting screening in these communities requires direct encouragement from GPs rather than generalised campaigns. A simple strategy could be a primary care tool to prompt reminders for mammograms during consults. The essential role of physicians in recommending screening amongst CALD women is supported by previous studies and may be due to the perception of GPs as authoritative figures, essential in assisting communities in navigating healthcare systems [31]. Research exploring general practitioner perspectives on providing mammographic advice to CALD communities is warranted.
An important finding from this study was that fear and fatalistic beliefs amongst CALD women led to avoidance of mammography. Many women expressed fear of being diagnosed with cancer, due to repercussions of a cancer diagnosis on their lives and their family. Several participants perceived cancer as unavoidable, untreatable, and preferred not to engage in screening as it was considered futile. Women of older age groups expressed that screening was no longer necessary due to the inevitability of death. The issue of fear and fatalistic beliefs interfering with timely mammography is well supported in previous studies investigating screening behaviours of CALD women [32][33][34]. A possible strategy to address fear and anxiety around screening involves encouraging CALD women to attend group mammograms. Participants have indeed indicated that going to BreastScreen with friends would allow them to feel more supported and encouraged to continue screening. Increased awareness about the benefits of early detection and treatment may also serve to increase screening rates amongst this population.
Based on our study findings, several targeted changes to health promotion and clinical practice should be considered for CALD women. These include sensitivity training for radiographers, emphasising strategies such as minimising exposure of the breasts, providing privacy to dress/undress and explaining the procedure throughout the screening process. GPs should also be advised to regularly discuss mammograms in consultations and provide clear instructions on how to access BreastScreen vans. Media campaigns on cultural radio stations and TV channels should convey information about the high cure rates associated with early detection and intervention. Culturally competent healthcare workers should also be trained to deliver messages to their respective communities at large social events.
A strength of our study was that it provided participants with an opportunity to openly discuss screening in-depth. Interviews were conducted by a female interviewer of Pakistani background, allowing participants to feel more comfortable in relating their experiences. However, our sample consisted primarily of women who were of eastern European background and reasonably proficient in English, thereby limiting representation of women from differing backgrounds and those who do not speak English well. Further, this was a small qualitative study with results not generalisable. Nonetheless, our sample size was sufficient to reach data saturation and has highlighted several key issues for CALD women around breast screening.

Conclusions
While many barriers and facilitators to breast screening among CALD women also exist in the general population, CALD women raised several additional issues. Our findings highlight numerous health promotion strategies to encourage breast screening amongst ethnic populations. These include increased GP recommendation through the introduction of primary care tools to prompt reminders for mammograms during consults, cultural competency training among radiographers and direct engagement with CALD communities via staff of similar cultural backgrounds. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study.

Data Availability Statement:
The data presented in this study are available on request from the corresponding author. The data are not publicly available due to privacy reasons.