“No woman can say she will not get it”:
Perceptions of Iranian women regarding breast
cancer screening behavior
Author:
Seyedesaba Noori
Student number:
10841962
Supervisor:
Dr. Barbara Schouten
Master’s Thesis
Graduate School of Communication
Research Master in Communication Science
University of Amsterdam
June 2016
Total word count:7373
Abstract
Objective. Prevalence of breast cancer in Iran is high and Iranian women are diagnosed
with breast cancer in advanced stages of the disease about 10 years younger than women in Western countries. This late diagnosis can be due to the low uptake of breast cancer
screening by them. This study explored perceptions of Iranian women regarding adopting breast cancer screening behaviors, using the Health Belief Model (HBM) as a theoretical framework. Design. In-depth interviews with 22 Iranian women (age range 30 to 67 years) in Tehran were carried out. Interviews were based on a topic-list consisting of questions assessing the constructs of the HBM: perceived barriers, perceived severity, perceived susceptibility, perceived benefits, self-efficacy and cues to action. Data-analysis was performed using Constructive Grounded Theory Method. Results. Several topics emerged for each construct of the HBM. Women’s perceived barriers consisted of fear, low priority, lack of knowledge, financial issues, cultural values and an inadequate doctor-patient relationship. Perceived severity was low when women perceived the disease to be curable in its early stage and it was high when women perceived the disease to be incurable in advanced stages, painful, disturbing and a threat to feminine beauty. Perceived
susceptibility was high when women had a positive family history of breast cancer or perceived other risk factors such as high prevalence of cancer, air pollution, bad diet and stress and it was low when women did not have family history of breast cancer and disregarded other risk factors. Perceived benefits was high, because screening behaviors were perceived to be influential methods for early detection. Women perceived their self-efficacy to be low when it came to breast cancer screening. Their self-self-efficacy was high with regard to health related decision-making. Talking about breast cancer screening with family and friends and having somebody in their immediate environment, adopting breast cancer screening behavior were cues to take up breast cancer screening. Conclusions. Focusing on increasing breast cancer knowledge via interventions does not suffice. Attention should be devoted to all the factors influencing Iranian women’s breast cancer screening behavior.
Keywords: Iran, breast cancer, Iranian women, breast cancer screening, Health Belief
Introduction
According to the World Health Organization (WHO), cancer is one of the leading causes of mortality worldwide, with approximately 14 million new cases and 8.2 million cancer related deaths in 2012. The number of new cases is expected to rise by about 70% over the next two decades (WHO, Factsheet, 2015). There are certain types of cancer, such as breast cancer, which are more prevalent than others worldwide. Breast cancer is the first malignancy of the five most common women’s cancers in 2012 and it is the leading cause of death among women aged 20-59 worldwide (WHO, Factsheet, 2015; WHO, Factsheet, 2013).
In 2011, breast cancer was the cause of death of over 508,000 women globally (WHO, n.d). Almost 50% of breast cancer cases and 58% of deaths occur in less developed countries (WHO, n.d). In Iran, breast cancer constitutes 21% of all cancers among Iranian women (Babu et al., 2011; Noroozi, Jomand, & Tahmasebi, 2010), with an incidence rate of 22 per 100,000 women (Jarvandi, Montazeri, Harirchi & Kazemnejad, 2002).
Most Iranian women are diagnosed with breast cancer between ages 35 and 44 years (Heidari, Mahmoudzadeh-Sagheb & Sakhavar, 2008; Taleghani, Yekta, & Nasrabadi, 2006), which is about 10 years younger than their western counterparts (Harirchi et al., 2000). This early diagnosis is partly due to the young age structure of the Iranian
population (Ghiasvand et al., 2011; Mousavi et al., 2007). Young Iranian women who have a family history of breast cancer, use oral contraceptives, are employed and give shorter periods of breast-feeding are at increased risk of developing breast cancer (Ghiasvand et al., 2011).
A large proportion of breast cancer is curable if diagnosed in the early stage (Hajian et al., 20011; McTiernan, Potter, & Potter, 2008). According to the International Cancer Screening Network (ICSN, 2012), 26 countries from Asia, North and South America and Europe participated in breast cancer screening programs in 2012. Iran did not participate in these programs, and currently there is no population-based mammography screening program (Babu et al. 2011) for women in Iran. Hence, Iranian women have to go to their gynecologist, clinics or hospitals for a clinical examination of breast cancer. From the start of this decade, several programs to raise awareness of and to assist early detection of breast cancer were implemented in Iran. Such programs include the distribution of a series of printed materials in specialist centers, launching a national breast cancer help-line and educational programs for employed women (Jarvandi et al., 2002). Additionally, in 2014, Iran has launched the international pink ribbon campaign to increase awareness and knowledge about breast cancer and to introduce prevention and treatment methods to women (“Launching international pink ribbon in Iran”, 2014). Moreover, there are health-related programs on national TV in which specialists talk about different health issues such as breast cancer and introduce its prevention and treatment methods.
Because there is no population-based breast screening program in Iran, it is not clear how many Iranian women adopt breast cancer screening behavior. However, studies show that most Iranian women are diagnosed with stages ІІ or ІІІ of breast cancer when no treatment can be provided anymore (Hajian et al., 2011; Harirchi et al., 2005; Jarvandi et al., 2002; Mousavi et al., 2007), indicating that Iranian women fail to perform breast cancer screening and do not seek help until at advanced stages of the disease.
Scarce studies regarding determinants of adopting breast cancer screening behavior (i.e. breast self-examination (BSE) and clinical breast examinations) among Iranian women show contradictory findings. While some studies show that Iranian women have adequate knowledge about breast cancer screening methods (e.g. Montazeri et al. 2008), other studies show the reverse (e.g. Hajian et al., 2011; Heidari et al., 2008). However, both high and low knowledge did not have a direct effect on adoption of breast cancer screening behavior. In addition, some studies found that women who have a history of breast cancer in their family are more likely to go for breast cancer screening (e.g. Jarvandi et al., 2002; Parsa & Kandiah, 2005), while other studies showed that a positive family history of breast cancer did not influence breast cancer screening behavior (e.g. Hajian et al., 2011;
Montazeri et al. 2008).
Considering these scarce and contradictory findings, a qualitative approach is needed to provide more insight into the underlying reasons of low adoption of breast cancer screening behavior among Iranian women.
Therefore, this study aims to explore Iranian women’s perceptions regarding breast cancer screening behavior and puts forward the following research question:
How do Iranian women perceive adopting breast cancer screening behavior? Answering this question could uncover more reasons contributing to low adoption of breast cancer and add to the literature of health behavior in Iran. By conducting this study insights are gained into how breast cancer is perceived and approached in Iran, which will help policy-makers in drafting effective breast cancer interventions and other means for stimulating women to get regular breast cancer check-ups, preventing the loss of lives and spending unnecessary national budget due to this disease.
Theoretical background Health Belief Model and breast cancer screening in Iran
The theoretical framework of this study is based on the Health Belief Model (HBM) (Janz & Becker, 1984), a model originally developed to help understand why individuals fail to participate in detective or preventive health behaviors (Strecher & Rosenstock, 1997; Borowski & Tambling, 2015).
The HBM has been successfully used in several public health fields, such as condom use interventions (Winfield & Whaley, 2002) and HIV screening (Buldeo & Gilbert, 2015; Lin, Simoni, & Zemon, 2005). The HBM consists of six constructs; perceived barriers, perceived severity, perceived susceptibility, perceived benefits, self-efficacy and cues to action.
Perceived barriers refers to the idea that individuals also take into account beliefs
regarding whether they can overcome difficulties (e.g. the health behavior might be expensive or time-consuming) or negative consequences of adopting that health behavior (e.g. the health behavior might be dangerous, unpleasant or inconvenient) (Borowski & Tambling, 2015; Montanaro & Bryan, 2014; Rosenstock, 1966). The more perceived barriers for adopting certain health behaviors individuals have, the less likely they are to adopt that behavior.
With regard to perceived barriers in Iran, some women attribute feelings of discomfort to breast screening behavior. For example, Hajian et al., (2011) found that Iranian women considered breast BSE and clinical breast examinations to be embarrassing or time consuming behaviors.
Seeking breast cancer screening also depends on how women prioritize their life. Lamyian et al., (2007) found that Iranian women give higher priority to taking care of their families and their everyday life tasks than to their own health, posing a barrier to adopting breast cancer screening behavior.
In addition, knowledge plays an important role in adopting breast cancer screening behavior. Lack of knowledge can be considered as a barrier, as it affects both the perceived importance of breast cancer screening and how to perform it. Many Asian women
misunderstand the concept of preventive behaviors (Chong, Krishnan, Hong & Swah, 2002; Goel, Wee & McCarthy, 2003; Parsa, Kandiah, Rahman & Zulkefli, 2006) and may not know that they should regularly screen for breast cancer, because they falsely assume that if they once had a test, a repeat screening is unnecessary (Im, Park, Lee, & et al., 2004; Parsa et al., 2006). Also, results of studies in Iran (e.g. Montazeri et al., 2008; Jarvandi et al., 2002) indicated that one of the main reasons women did not perform BSE was that they did not know about it or how to perform it. In concordance with these results, Secginli and Nahcivan (2006) found that women who had knowledge of mammography guidelines were 10 times more likely to have regular mammograms than women who did not have
knowledge about these guidelines.
Last, financial issues may prevent women from seeking breast cancer screening. Lamyian et al. (2007) found that womens’ insurance status and availability of affordable screening services were mentioned as barriers to adopting the breast cancer screening behavior. Employed women in Iran can obtain insurance from their employer company. Unemployed women can buy insurance from governmental organizations on their own.
However, it depends on their financial status, whether or not they can afford to buy the insurance.
Perceived severity entails that people vary in their perception of the seriousness of
developing a disease or leaving it untreated (Janz & Becker, 1984). Perceived severity consists of two dimensions; evaluation of clinical/medical consequences of a disease (e.g. pain or disability) and evaluation of the possible social consequences of a disease (e.g. impact on family life or social relations) (Janz & Becker, 1984). To our knowledge, no research has studied perceived severity of breast cancer among Iranian women.However, Abolfotouh et al., (2015) found that Saudi women reported low scores of seriousness for breast cancer which led them to not performing BSE. Also, Rastad, Khanjani and Kalantari (2012) found that despite having serious signs of breast cancer, Iranian women were still not willing to visit a doctor because they thought the potential subsequent appointments might cause them to sacrifice their family responsibility and job commitment. Hence, the perceived severity of possible social consequences of having breast cancer, such as sacrificing family and job responsibilities might have outweighed their need to go for breast cancer screening.
Perceived susceptibility refers to individuals’ subjective perception of risk of
developing a disease (Janz & Becker, 1984). Jarvandi et al., (2002) found that Iranian women with a family history of breast cancer were more likely to perform BSE than women without a family history of breast cancer, because the first group might perceive higher risk of developing the disease. In contrast, Hajian et al., (2011) found no association between family history of breast cancer and performing BSE. They attributed this finding to inadequate knowledge of women about potential risks of breast cancer, which led them
not to seek for early detection. However, Rastad et al., (2012) found that although Iranian women had enough knowledge about breast cancer screening methods, knew how to perform it and were aware of the importance of early screening, they did not perform the behavior because they did not think that this disease might happen to them. In other words, their perceived susceptibility was low.
Perceived benefits refers to the idea that individuals do not adopt a particular health
behavior unless they evaluate it as beneficial and effective in curing the disease (Janz & Becker, 1984). Individuals might consider themselves as susceptible to a disease and evaluate that disease to be very serious, but still not take up a particular health behavior because they also take their beliefs regarding the effectiveness of the various health actions for choosing treatment and prevention of that disease into account in choosing a health action.Hashemian et al., (2009) found that a majority of Iranian women reported a higher probability of performing BSE if they knew about its benefits, indicating that perceived benefits might be positively associated with breast cancer screening behavior.
Self-efficacy was later added to the model by Rosenstock, Strecher and Becker
(1988) and refers to individuals’ perceived ability and capability to adopt a health behavior (Montanaro & Bryan, 2014). In other words, if one feels to have higher control over undertaking a health behavior one would be more likely to do so than when one is low in control. Studies show that the more confident women are in their ability to perform breast cancer behaviors, the more likely they are to perform those behaviors (e.g. Ceber et al., 2009; Hajian et al., 2011; Kara & Acikel, 2009; Mason & White, 2008; Satitvipawee, et al., 2009). In addition, women who have higher self-efficacy and perceive fewer barriers
are more likely to perform breast cancer screening behaviors compared to women who have low self-efficacy and perceive more barriers (Hajian et al., 2011).
In addition to these five constructs, to facilitate the decision-making process, there should be some direct stimulus (Janz & Becker, 1984). These cues to actions may be internal triggers such as symptoms or external triggers such as a health campaign or interventions and interpersonal interactions (Janz & Becker, 1984). For example,Lamyian et al., (2007) argued that effective patient-doctor communication and receiving advice from family and friends play a role in motivating Iranian women to adopt breast cancer screening behavior.
In sum, according to the HBM, there are six possible constructs related to the adoption of breast cancer screening behaviors. Given the contradictory and scarce results on adopting breast cancer screening behavior in Iran and the fact that some influential factors of the HBM, such as interpersonal communication as one of the cues to action have not yet been studied, this study aims to fill this gap in our knowledge by exploring how Iranian women perceive breast cancer screening behavior. By interviewing the women as the ones who are dealing with this issue, we can identify underlying reasons for (not) adopting breast cancer screening that quantitative research might have failed to identify.
Method Participants
To recruit participants, purposive sampling was applied, a non-probability sampling method, which was used because participants had to follow certain logic of sampling and fulfill certain characteristic (Riffe, Lacy & Fico, 2014). With regard to this study, women had to be 30 years old, the age that Iranian women should start preforming breast cancer screening, and above and willing to be interviewed about breast cancer. To achieve a broad
spectrum of perceptions, we strived for heterogeneous sample, consisting of women with various socio-demographic backgrounds.
22 single and married Iranian women living in Tehran were recruited. Around half of the participants were recruited via email and telephone using the social network of the researcher, while still located in Amsterdam. Those participants introduced the next interviewees to the researcher, using their friends, family and colleagues network in Teharn. Participants were between 30 and 67 years old (see Table 1 for characteristics of the participants).
The number of participants was determined by the principle of data saturation (Glaser & Strauss, 1967), which refers to a phase in data collection when no new data or
Variable % of women (n=22) Age (years) Mean(SD) 40.8(12.5) Marital status Married 50.0
Single/ Divorced/ widowed 50.0 Number of children
None 59.0
One child 27.3
Two children 4.6
Three children 9.0
Perceived general health
Bad 22.7
Moderate 40.9
Good 36.4
Education
High school diploma 22.7 Higher education 77.3 Occupation Housewife 27.2 Employed 72.8 Religion Muslim 100.0
themes are emerging in addition to existing conceptual categories (Francis et al., 2010). Data saturation in this study was reached when 22 women had been interviewed.
Procedure
In-depth face-to-face interviews were carried out. Before conducting each interview an informed consent form in Farsi (see appendix A for English version), explaining the subject of the study to the participants, their right to withdraw from the study at any time and to stay anonymous during the study, analyzing the data and publishing the results was read and signed by the participants.
Participants were interviewed in their chosen locations, either their home or
workplace, without the presence of other people. The interviews lasted between 45 minutes to one hour and were all audiotaped.
Topic list
A topic list (see appendix B) was developed, based on the constructs of the HBM and literature review. The topic list started with some general questions about the
participants’ background characteristics (e.g. demographics, perceived general health), followed by questions regarding the six general HBM constructs; perceived barriers (e.g. ‘Are there any barriers for you to do breast cancer screening?’), perceived severity (e.g. ‘How severe do you think breast cancer might be for you?’), perceived susceptibility (e.g. ‘Do you think you are at risk of developing breast cancer?’), perceived benefits (e.g. ‘What do you think the benefits are to have a breast cancer check-up?’), self-efficacy (e.g. ‘Do you think that you are able to check your breasts on your own?’) and cues to action (e.g. ‘Do you talk about having a breast cancer check-up with your husband?’). All questions
were followed by open follow-through questions to stimulate participants to reflect on the topic at hand.
After conducting the first 8 interviews some slight adjustments were made to the topic list, based on new topics that emerged during the first round of the interviews. This new topics were only with regard to perceived barriers and added some more questions about this construct (e.g. ‘Could you mention the three most important reasons for not adopting or late adoption of breast cancer screening?’) to the topic list.
Data Analysis
The Constructive Grounded Theory Method (CGTM; Charmaz, 2000) was applied to analyze the data. This method is part of Grounded Theory, developed by Glaser and Strauss (1968), using the logic of induction to generate new theory from data in a repetitive and evolving process (Kok Ong, 2012). In CGTM emphasis is being placed on
respondents’ subjective experiences and feelings which can be expressed in different ways. Using CGTM, all interviews were transcribed and translated into English, and coded in two stages. In the first stage, initial coding was applied in which each piece of data was examined line by line to produce as many codes as possible to identify all conceptual possibilities (Birks & Mills, 2011) (See appendix C for initial coding-list). In the second phase, focused coding was applied to group the initial codes under six main codes, reflecting the six main categories of the topic list: perceived barriers, , perceived severity, perceived susceptibility, perceived benefits, self-efficacy and cues to action. That is, the initial codes that referred to one of the six themes were clustered together and labeled under that theme.
To increase reliability and validity of the study, three transcripts were coded independently by two researchers. Codings were discussed until mutual agreement was achieved. Subsequently, two more transcripts were coded independently by two
researchers. No differences in coding emerged between the researchers on these two transcripts. In addition, to increase the validity a member check was performed on 9 of participants. Farsi version of the transcriptions was sent to them by email to check the accuracy of the narration. Some minor changes with regard to the content and transposition of sentences were applied to them.
Results
Breast cancer screening behaviors
10 out of 22 participants did not perform any kind of breast cancer screening behavior. Of the remaining 12 women, six performed only BSE, of whom three performed it monthly. The other six women adopted clinical examination. Only two of the latter six women adopted all the detection methods.
Table 2 shows a summary of the themes which emerged from the interviews, using the HBM as a framework. The concept-indicator model derived from the results can be found in appendix D.
HBM determinants Themes Sample Quotes
Perceived barriers Low priority “I usually pay attention to my child and my husband's health first and my own health is my second concern”
Fear “I am scared of doing sonography. I am scared of knowing that there is something wrong with my breasts”
Cultural values “I believe that people will attract whatever they think about. So, I try not to think that I might get breast cancer, instead I try to think that I would never get breast cancer… I try to want good thing for myself”
Financial issues “Financial issues is my other concern. At the moment, I do not have an insurance to cover my breast cancer screening
expenses. Therefore, I prefer to wait until my insurance is ok again and then go for a check-up”
Lack of knowledge “Many women still do not know about breast cancer risk and they do not know that they should breast cancer check-ups” Inadequate
doctor-patient relationship
“Gynecologists do not encourage women to have sonography or mammography. For example, they do not ask a patient about the last time she had a sonography or a mammography examination or whether she has ever had it. Nor they remind a patient that they should adopt breast cancer screening after a certain age. Only some of them examine their patients’ breasts”
Perceived severity Treatable in early stage
“I do not think that breast cancer is a severe disease, because if it is diagnosed in its early stage, the person still has a high chance of survival, because breast cancer can be easily cured in that stage”
Clinical
consequences (pain, disturbance, threat to feminity)
“Breast cancer is a severe disease, because one has to deal with a long-term pain” “You may lose your breast, the feminine
part of your body. Nothing can replace it.” “Having breast cancer disturbs one’s daily routine and forces her to deal with stressful issues”
Table 2: HBM and the emerged themes for perceptions of Iranian women regarding breast cancer screening
HBM determinants Themes Sample Quotes
Perceived susceptibility No family history “We do not have a history of cancer in our family, so I do not see myself at risk of getting it”
High prevalence “I do see myself at risk of getting
breast cancer, because I see a lot of women dealing with it. Nowadays, in Iran cancer could happen to anybody. It has become like a tsunami”
Perceived benefits Curability of Early detection
“I think breast cancer screening is beneficial. It helps you find out about the disease early Breast cancer might be curable if it is diagnosed in the early stage”
Self-efficacy Not able to perform BSE
Able to make health-related decisions
“I do not perform breast self-examination, because I am not able to understand the differences between the lumps inside my breast. And this makes me more worried and nervous”
“I decide about my health on my own”
Cue to action Talking about breast cancer
“I talk about breast cancer with my mother. She always emphasizes on taking care of our breasts”
Observing a person undergoing breast cancer screening
“I think if somebody in my family decides to examine her breasts for cancer, I might get motivated to do so as well. For example, if my sister decides to screen her breasts for cancer I might decide to do it as well. Because it makes me start thinking about my health”
Perceived barriers
Low priority, fear, cultural values, financial issues, lack of knowledge and an inadequate doctor-patient relationship emerged as main barriers to adopt either BSE or clinical breast examinations. All participants of this study reported that they themselves, as well as Iranian women in general, give low priority to taking care of their health in general, and adopting breast cancer screening behavior in particular. The well-being of other
members of the family, such as their husband and children, has higher priority for them and making sacrifices for them is part of the Iranian culture. For example, one of the participants said, “Society expects a woman to take care of her husband and children first and make sacrifices for them, then take care of her own well-being” (63 years old).
Moreover, 19 out of 22 participants believed that having a beautiful face and appearance is a higher priority for Iranian women than paying attention to their health and adopting breast cancer screening. Participants believed that a simple appearance is not valued in Iranian culture. On the contrary, wearing heavy make-up and being fashionable is the value on which social judgments are based.
Fear, was identified by the majority of participants to be a very important barrier to adopting breast cancer screening. Fear of knowing that one could be diagnosed with breast cancer was the most frequently mentioned type of fear. To illustrate, one of the participants said, “I have never been to a doctor for breast cancer screening. It scares me a lot. Even finding one lump in my body scares me and I cannot take it. That is why my feet don’t even move to go to a doctor for breast cancer screening” (35 years old).
Fear of knowing that one has breast cancer can be accompanied with having fear of the future because of being an ill person. Uncertainty about the chances of survival and about how one would deal with the disease hinders breast cancer screening behavior. In addition, fear of the reaction of others, such as, upsetting others or evoking their pity, was mentioned as a barrier by few participants as well. It should be noted though that, although these different types of fear prevented participants from adopting breast cancer screening, all of them stated that they would make themselves overcome their fear and go to a doctor to examine their breasts when they feel that something is wrong with their breast.
However, waiting until an illness occurs and then looking for treatment is one factor of a larger barrier to do with Iranian “cultural values”.
The majority of participants supported the value of postponing searching for a solution until something bad (e.g. an illness) happens. In other words, they believed that they should live in the moment. For example, one of the participants stated, “If I feel that there is something wrong with my breasts, I would definitely go to a doctor. But now that I don’t have any symptoms, I don’t think about it” (32 years old).
Participants associated this “living in the moment” attitude to Iranian culture and the way people are being brought up, which leads to a preference to “block ‘bad’
thoughts”. Thinking about illnesses such as breast cancer is an example of a bad thought, which should be avoided, because such thoughts make them upset and nervous. Moreover, many participants who reported avoidance of bad thoughts pointed out that they believed that by thinking about bad things they would cause them to happen to them. For example, one of the participants said:
“My husband tells me not to think about breast cancer too much, because you know when you think about something it would happen to you” (36 years old).
Hence, the common belief of “whatever you think about might happen to you”, prevents Iranian women from adopting breast cancer screening behavior.
Although the half of the interviewees perceived lack of finances to be a possible barrier to go for a clinical examination for Iranian women in general, only three of the interviewed women indicated that they themselves did not go for check-ups because of financial concerns. The majority of the participants believed that the cost of an annual or biannual check-up is manageable. However, it might be a financial strain for low-income
or unemployed women, particularly for the ones who do not possess insurance.
Furthermore, even though a single check-up is affordable, participants discussed about the possibility that a simple doctor appointment could turn into a long journey of visiting various doctors and doing different tests which puts huge financial pressure on individuals, especially considering that, in general, medical treatments in Iran are expensive.
Additionally, Although only four of the participnats attributed not adopting breast cancer screening to their lack of knowledge, more than half of the participants perceived lack of knowledge as a barrier to breast cancer screening behavior for Iranian women, in general. They discussed that many women still do not know about the risk of breast cancer, its detection methods and the fact that they should screen their breasts regularly after a certain age, despite the increased prevalence of breast cancer in Iran during the past few years.
Some of the participants mentioned that an inadequate doctor-patient relationship forms a barrier to adopting breast cancer screening. According to these participants, gynecologists do not sufficiently encourage or remind women to adopt breast cancer screening, while at the same time, they believed that being encouraged by a credible source, such as a doctor, could promote the uptake of breast cancer screening behavior.
Moreover, the possibility of wrong diagnoses hinders women’s adoption of breast cancer screening, due to the distrust in doctors they create. Participants defined a wrong diagnosis as when a patient is healthy, but the doctor diagnoses that she/he has a certain health problem or when a patient has a health problem but the doctor fails to diagnose it. They believed that interpreting a test result wrongly put that person and his/her family under a huge emotional and financial pressure. To illustrate, one of the participants said,
“My father-in-law was wrongly diagnosed with a disease. We were very worried till it turned out that it was just a wrong diagnosis. That is why I do not trust doctors very much” (40 years old).
Perceived severity
Perceptions of severity of breast cancer depended on the extent to which the participants deemed the disease curable and included the clinical consequences, such as pain, disturbance and threat to feminine beauty. The majority of participants believed that breast cancer is not a severe disease, because they are of the opinion that breast cancer is a curable cancer, if it is diagnosed in an early stage. In their view, if breast cancer is
diagnosed in its early stage there is a high chance of survival and of going back to normal life for the patient.
Five of the participants considered breast cancer to be a severe disease, but only if it is diagnosed in an advanced stage when no treatment can be provided anymore. In addition, there was a third group of four women who believed that breast cancer was a severe disease without taking its stage into account. This group attributed having breast cancer with clinical consequences, such as being in severe pain during treatment, a disturbance of everyday life and activity due to the cancer
Moreover, they viewed breast cancer as being a threat to feminine beauty, which is posed by the possibility of having to remove the breast(s), as one participant explained, “I think breast cancer is a very severe disease. I associate breast cancer with breast removal. You might survive from cancer, but you have lost your breast and it is not replaceable. Breasts are signs of feminity and beauty for women. Breast removal highly decreases the person’s self-confidence.” (34 years old).
Perceived susceptibility
Perception of susceptibility was low by about half of the participants due to not having family history of the disease. They, also, gave no weight to other factors which could put them at risk for developing breast cancer. Only two participants saw themselves at high risk of getting breast cancer due to a positive family history. The other participants who did not have a positive family history of breast cancer, did see themselves at risk of developing breast cancer due to its high prevalence in Iran and preferred to face the reality of the current situation and its causal factors. This group of participants revealed that, considering the high prevalence of breast cancer in Iran, and its risk factors such as air pollution, stress and bad diet, it would be illogical to merely consider having a positive history of breast cancer or cancer as potential risk factor, for developing the disease. One of the participants stated, “In my family, I do not have a positive family of breast cancer. But, gene is one factor. There are other factors such as stress, air pollution and bad diet, which contribute to breast cancer. So, I see myself at risk of developing breast cancer” (65 years old).
Perceived benefits
Facilitating early detection of breast cancer led to high perceived benefits by all the participants. They believed benefits of early diagnosis not only leads to quicker and easier treatment of the disease, but also to peace of mind about their health status. As one of the participants stated, “One of the benefits of the breast cancer screening is that it makes you relaxed and sure about your health. It gives you peace of mind and you can enjoy your life.” (64 years old).
Self-efficacy
Low self efficacy was reported by nine of participants with regard to performing BSE not for undergoing a clinical examination. These women indicated that they are not able to distinguish between healthy and unhealthy lumps inside their breasts. In addition, although participants stated that they have the autonomy to make health-related decisions on their own, the process of decision-making can be facilitated by the support they receive from their immediate family members. Participants revealed that receiving support and confirmation strengthens their decision to adopt a health behavior, as the following quote illustrates: “I decide about my health with the help of my husband. He encourages me to do my check-ups. However, if he disagrees with my decision I would not implement that [husband’s] decision either, because I believe he shows his support by approving my decision. So, when he disagrees with my decision, I might think he does not care about me.” (40 years old).
Cues to action
Two themes emerged from the interviews which function as a cue to action for the interviewees’ breast cancer screening behavior; talking about breast cancer detection behavior with family and friends, and observing somebody in their immediate environment who has taken up breast cancer examinations.
Participants believed that the high prevalence of cancer in general, has made it easier for people to talk about the disease compared to a few years earlier, when people were less willing to talk about the topic. Although seven of the participants believed that some people are still not willing to talk about breast cancer with each other due to the negative feelings surrounding it, the majority of them stated that they talk about breast
cancer with their family and close friends and that these discussions motivate them to take up breast cancer screening.
In addition to talking about breast cancer with family and friends, seeing somebody in their immediate environment who has taken up breast cancer screening is another cue for adopting breast cancer screening behavior by the participants. Participants revealed that observing a relative or a friend adopting breast cancer screening makes them worried about their own health and motivates them to do the same. One of the participants said, “ If my sister decides to go for screening, I would go as well” (45 years old).
Discussion and Conclusion
This study aimed to explore perceptions of Iranian women regarding breast cancer screening behavior, by using the HBM as a theoretical framework. Results show that Iranian women perceive more barriers to breast cancer screening than benefits, indicating the different weight they give to the different perception.
Within each type of perception, several themes could be identified, thereby providing us with more specific insights into the underlying reasons of (not) adopting breast cancer screening behavior among Iranian women. The findings of this study can assist policy-makers in creating necessary and effective health interventions to increase adoption of breast cancer screening behavior by Iranian women.
The most important perceived barriers to adopting breast cancer screening behavior mentioned by the women in this study were fear, financial issues, lack of knowledge, low priority and cultural values. Previous studies (e.g. Parsa & Kandiah, 2005; Parsa et al., 2006; Rastad et al., 2012) have also identified fear, and in particular fear of knowing that
one has breast cancer, as an important factor that hinders breast cancer screening by
Iranian women. Hence, interventions or media attention to enhance breast cancer behaviors should focus on overcoming women’s fears.
Financial issues can also affect the adoption of breast cancer screening behavior, although this topic did not emerge as a main barrier in this study, possibly because of the relatively high educational level of the interviewed women. Lamyian et al. (2007) found that having an insurance to cover clinical examinations to positively affect breast cancer screening behavior. The cost of clinical breast examinations in Iran is around 200 to 300 thousand Tomans (equivalent to 60 to 75 Euros), which is partially covered by health insurance. Unemployed women without a husband and a father have to buy their own insurance, which, considering their lack of income, they might not be able to afford, thereby hindering the uptake of breast cancer screening.
Lack of knowledge, also, did not come out as a main barrier for women in this study, perhaps due to their good knowledge about breast cancer and its screening methods. However, it was introduced by the majority of the participants as a barrier to adoption of breast cancer screening for Iranian women in general. This finding is congruent with the findings of previous studies (e.g. Jarvandi et al., 2002; Hajian et al, 2011), and may partly be explained by a lack of media attention for breast cancer in Iran. Most participants believed that media coverage of breast cancer is not proportional to the high prevalence of the disease. Another problem is that these programs are usually broadcasted in the
mornings, when they are not accessible to employed women. These programs are
Thus, the media, and specifically national television, should aim to repetitively broadcast such programs at diverse times.
Another barrier is relatively novel. Iranian women seem to prioritize their life above their own health, a result corroborated in a few other studies (e.g. Lamyian et al., 2007; Rastad et al., 2012), the interviewees in this study considered giving priority to family members to be rooted in the culture and societal expectations of Iran. They believed that they are not taught to pay attention to their physical and mental health and are
expected to put others before themselves. In Iranian culture, being “a good mother or a wife” is more important than being a healthy woman. According to the study by Rastad et al., (2012), taking up breast cancer screening sometimes is postponed even after obversing breast cancer symptoms, indicating significant weight allocated to other issues rather than their health by Iranian women. Moreover, being the basis of social judgment and
acceptance, higher priority is placed on having a good appearance.
This study also identified a new barrier that hinders breast cancer screening behavior among Iranian women, namely the tendency to live in the moment and to avoid bad thoughts. Living in a socially, politically and economically unstable country has turned the coping mechanism of living in the moment into a cultural value, which Iranians base their everyday behavior on. Related to living in the moment, thinking about bad incidents is socially rejected and avoiding any bad thought is promoted as a good way of living. These cultural values, however, are a threat to preventive behavior. In fact, they replace preventive behavior with treatment, discouraging Iranian women from preventing illnesses in advanced. As a result, being diagnosed with breast cancer would be very devastating news for them, which makes acceptance of the disease very difficult. To overcome these
deterrent cultural values, benefits and importance of preventive behavior with regard to health issues should be more focused via media and interventions.
Regarding to perceived severity, although Iranian women took three factors into account to determine the extent of breast cancer’s severity, the majority of them did not perceive breast cancer as being a severe disease. The first factor has to with the perception of the high chance of treating the disease if it is diagnosed early, which was held by the majority of the participants. They believed that due to the progression of medical science breast cancer can be diagnosed and treated faster and easier than before. Also, they had a relative or a friend who has suffered from breast cancer and got cured faster, because of early diagnosis, than someone suffering from another type of cancer. The second factor is related to high perception of severity, only if breast cancer is diagnosed in advanced stages. Participants who took this factor into account, believed that in the advanced stage of breast cancer chance of survival decreases, which turns breast cancer into a severe disease. And the third factor relates to clinical consequences of breast cancer. Participants who
considered this factor, believed that pain, chance of breast removal and disturbance of daily routine turn breast cancer into a severe disease. It is important to note that few participants took the last two factors into account.
In contrast to the low perceived severity of breast cancer, Iranian women do perceive themselves as being highly susceptible to this disease, some due to having a positive family history of breast cancer. This relation between having a positive family history of breast cancer and perceived susceptibility was also reported by Jarvandi et al., (2002). However, it is worth mentioning that the Iranian women in this study gave
diet, which they think increase their susceptibility to breast cancer. Hence, even in the absence of a positive family history, Iranian women do find themselves susceptible to breast cancer, possibly because of its high current prevalence. In fact, in this study it was found that the shared belief among most of the participants was that a positive family history of breast cancer is no longer the determining factor of breast cancer, considering the environmental risk factors as more important reasons.
Participants reported low self-efficacy for BSE. Impact of self-efficacy on performing BSE was also found by Parsa and Kandiah (2005). Low self-efficacy can be overcome by educational programs, such as educational conferences at health care centers or workplaces in which women are (visually) taught how to examine their breasts and consequently feel more self-confident about this detection method. Considering that BSE is the primary method for checking the breasts, missing on this detection method could lead to the late diagnosis of breast cancer.
Although participants of this study reported high self-efficacy with regard to decision-making concerning their health, they admitted that receiving support from family members makes it easier for them to implement their health decisions. These findings are in accordance with findings of previous study by Lamyian et al., (2007). They, also, found that receiving support from family members would encourage women to take up breast cancer screening behavior.
Last, this study found that talking about breast cancer with family and friends and having somebody in their immediate environment who regularly examines her breasts for cancer can serve as powerful cues to action for Iranian women to take up breast cancer screening. This may be explained by the fact that, participants believed that, in comparison
to the past few years, talking about breast cancer is no longer considered to be a taboo. Nowadays, breast cancer is being talked about among women and this sensitive topic can be addressed more comfortably. Consequently, this may cause women to become aware of their health and feel the urge to take up a clinical examination or start BSE. Thus, health interventions should try to motivate women to adopt breast cancer screening by promoting interpersonal communication as a strong determinant for breast cancer screening.
An important limitation of this study is that it was conducted in only Tehran. Therefore, the results cannot give an overarching understanding of perceptions of Iranian women regarding breast cancer screening. Also, due to interview bias, participants might have given socially desirable answers or reported their beliefs wrongly.
First limitation can be overcome in future studies by interviewing women from different social classes, remote areas and other cities. Additionally, as a further step, conducting research on perceptions of health workers involved with breast cancer and breast cancer screening on adopting this behavior by Iranian women will explore low uptake of breast cancer screening from a professional aspect, namely, shortcoming the health care system. Moreover, emerged themes from this study can be translated into hypotheses and be tested by a quantitative follow-up study, which will investigate the topic from a more explanatory perspective.
In conclusion, this study showed that Iranian women have a high perception of the importance and benefits of breast cancer screening. However, this behavior is hindered by perceived barriers such as giving low priority to one’s health and deterrent cultural values. Thus, health interventions aiming at merely increasing the knowledge about breast cancer would fail to change the health behavior of Iranian women. It is important that women
believe that their health is equally important as their family member’s health and they must pay more attention to preserve it. Additionally, effective and objective health interventions should be designed to give priority to preventive behavior over treatment and to increase the feeling of and self-efficacy in performing breast cancer screening methods.
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Appendices
Appendix A: Informed consent form
For participation in research on “Perception of Iranian women regarding adopting breast cancer screening behavior; A qualitative study”
I hereby declare that I have been informed in a clear manner about the nature and method of the research, as described in the factsheet “perception of Iranian women regarding
adopting breast cancer screening behaviour”. My questions have been answered
satisfactorily.
I agree, fully and voluntarily, to participate in this research study. With this, I retain the right to withdraw my consent, without having to give a reason for doing so. I am aware that I may stop my participation in the experiment at any time. If my research results are used in scientific publications or are made public in another way, this will be done in such a way that my anonymity is completely safeguarded. My personal data will not be passed on to third parties without my explicit permission.
If I wish to receive more information about the research, either now or in the future, I can contact Seyedesaba Noori (seyedesaba.noori@student.uva.nl); Nieuwe Achtergracht 166, 1018 WV Amsterdam). Should I have any complaints about this research, I can contact the designated member of the Ethics Committee representing the ASCoR, at the following address: ASCoR secretariat, Ethics Committee, University of Amsterdam, Nieuwe Achtergracht 166, 1018 WV Amsterdam; 020-525 3989; ascor-secr-fmg@uva.nl. Signed in duplicate:
……… ……… Name of test subject Signature
I have provided an explanation of the research. I declare that I am prepared to answer any additional questions about the research to the best of my ability.
……… ……… Name of researcher Signature
Appendix B: Topic list
Hello, today I want to talk about adoption of breast cancer screening behavior among Iranian women. In particular, I will ask some questions about gaining information about breast cancer and perceptions regarding adopting breast cancer screening behavior. Please keep in mind that your answers will be kept anonymous and confidential. Also, you can withdraw from the interview for any reason and at any time that you want. So please answer questions as truthfully as possible.
We start with some general questions: 1. How old are you?
2. Are you married or single?
3. What is the composition of your household?
4. How many children do you have and how old are they? 5. Do you work?
IF YES, THEN: a. What do you do?
6. Do you consider yourself to be religious? IF YES, THEN:
a. Do you actively practice your religion? In what ways? 7. How do you perceive your health in general?
Searching the information, understanding and implementing the information 1. Have you heard of breast cancer screening?
IF YES, THEN:
a. How have you heard about it? b. What have you heard about it?
c. Can you tell me what you know about breast cancer screening? 2. Have you ever searched for information about breast cancer?
3. Have you ever searched for information about breast cancer screening method? IF YES, THEN:
a. What did/do make you to search for the information? (Or what was/is the reason that you search for the information?)
b. What sources did/do you use for searching information (TV, internet, Magazine, newspaper, etc.)?
c. How do you evaluate the accessibility of the breast cancer information? Do you think it is accessible or it is not very easy to access to information? d. Were you able to understand/interpret the information on your own? IF NOT, THEN:
Why not?
e. Or do you need an expert to help you understand the information?
f. Have you ever decided to go for breast screening according to the information you gained? Why?
IF NO, THEN: Why not?
4. In your opinion, what is the best source for gaining breast cancer information? If they had not searched for breast cancer in specific, ask what sources do they use to gain information for health-related subjects?
Perceived susceptibility
1. Do you think you are at risk of developing breast cancer? IF YES, THEN:
Why?
IF NO THEN, Why not?
2. Have you ever had a check-up for breast cancer (mammography, clinical experiment and breast self-examination)
IF YES, THEN:
a. When did you go for the first time? Ask about the amount of years/time ago and the reason why they went at that time.
b. How often do you do breast cancer screening? c. Why do you go X amount of times?
d. Do you know how to check your breast?
e. Have you ever checked your breasts? Why? Why not? IF YES, THEN:
How often do you do that?
f. When you check your breasts do you know to what signs you should pay attention?
3. Do you think having a check-up for breast cancer is important? Why (not)? 4. Has anyone in your family, friends or colleagues been diagnosed with cancer? 5. Has anyone of your family, friends or colleagues bee diagnosed with breast
cancer?
Perceived barriers
1. In general, how do you feel about having breast cancer screening?
2. Are there any barriers for you to do breast cancer screening? (ask twice, both for breast-self examination and mammography? clinical check-up)
3. Do you think having a breast cancer check-up is doable? Why? Why not? 4. Do you talk about adopting a breast cancer screening method with your friends
or family? IF YES, THEN:
a. What do you specifically speak about? b. Who do you speak to? Why?
5. Do you think if somebody of your friends or family members has a breast cancer check-up you might get one as well? Why (not)?
6. Do you think that if you want to have a breast cancer screening your family and friend will support you?
7. Do you talk about having a breast cancer check-up with your husband? IF YES, THEN:
a. What aspect of it do you talk about? IF NO, THEN:
a. Would you talk about breast cancer with him? Why (not)? 8. What is your husband’s opinion about having a breast cancer check-up? 9. What do you think would your family and friends’ reaction be if you were
diagnosed with breast cancer? Why do you think they’ll react like this? 10. What do you think would your husband’s reaction be if you were diagnosed
11. Which one these two statements do you think is correct and why?
a. Human’s well being is in God’s hands and people cannot prevent, detect or cure the disease. In other words, whatever God wants to happen, it will happen.
b. It is everyone’s responsibility to take for their own health.
Perceived benefits
1. What do you think the benefits are to have a breast cancer check-up? 2. Do you think that breast cancer is curable?
3. Do you think breast cancer examinations are effective? IF YES, THEN:
Do you think some types of screening are more effective than others?
IF NO, THEN:
Why not?
Perceived severity
1. How severe do you think breast cancer might be for you?
2. Do you think if you were diagnosed with breast cancer, it would affect your life?
IF YES, THEN:
a. In which ways it would affect you?
Self-efficacy
1. Do you think you can make health related decisions on your own? IF NOT, THEN
Why not? What factors impact your decision making process? 2. Do you think that you are able to your breasts on your own?
3. Do you know where to go to have a mammography or clinical experiment test?
Extra questions
1. In your opinion, which one has a higher priority for Iranian women, appearance or health? Why?
2. Could you mention three most important reasons for not adoption or late adoption of breast cancer screening by Iranian women?
Do you have any questions left about this interview?
THANK YOU FOR YOUR COOPERATION!
Appendix C: Open coding
Initial codes
Cue to action/ emotional support Perceived barrier/ lack of knowledge Perceived susceptibility/ high( environmental factors) Perceived barrier/financial issues
Preceived benefits/ high Perceived barrier/ high, lack of knowledge Easy access to info Cue to action/ interpersonal communication Understanding the info Perceived barrier/ financial issues
Not implementing the info Perceived barrier/ low, fatalism
Perceived susceptibility/ low Perceived benefits/ high, early detection Perceived severity/ low, curable Perceived severity/ high, pain
Cue to action/ motivation General health status/ positive Perceived barrier/ high, waiting till the last minute Knowledge about breast cancer/ high Self- efficacy/ high Perceived barrier/ blocking bad thoughts Perceived barrier/ high, financial issues Cur to action/ credible source, encouragement Information-seeking/ high Health information seeking/high
Doctor-patients relationship/weak Perceived susceptibility/high, environment Perceived susceptibility/high, environmental factor Self-efficacy/ high, decision meaking Self-efficacy/ low, unable to do BSE Perceived barrier, lack of knowledge
Perceived barrier/ high, priority to others Social support, help coping with disease family Perceived barrier/high. Busy lifestyle Interpersonal communiation/negative, not
wanting to burden others
Perceived general health/ negative Perceived benefits/ high (curable at early stage) Screening behavior/negative Perceived severity/high, negative impact on life BES behavior/medium (no self BSE, once yearly
doctor BSE)
Self-efficacy/ high, health-decision-making Perceived barrier/ no time Self-efficacy/low (BSE/overworry)
Information seeking/medium Perceived barrier/high, family has no time to accompany
Perceived barrier/high Screening behavior/ positive Self- efficacy/low, not able to distinguish the lumps Information seeking/medium
Initial codes
Perceived General health:good Perceived barrier/low priority Information seeking-low Perceived barrier/fear of knowing Perceived susceptibility high/stress/environment Perceived susceptibility/high (realism) Perceived barrier- no prevention behavior due to
stress
BES behavior/ positive
Social support/encouragement Screening behavior/negative (waiting till last minute)
Perceived severity/low Perceived benefits/high(curability early detection
Perceived barrie/living in the moment Perceived susceptibility/ high(high prevalence cancer)
Self-efficacy/medium (going, but negative feelings
Perceived barrier/low(no fatalism/respomsiblity to God) Perceived barrier/fear of screening Perceived benefits/high(particularly
screening) Perceived barrier/fear of negative reaction by
others
Perceived severity/low, early stage cancer Social support/ coping with breast cancer positive
(parents)
Perceived severity/high, because of pain and pressure.
Interpersonal communication/negative (no reason to worry)
Sef-efficacy/high(no influence husband) Social support/ encouragement screening family Perceived barrier/ high priority appearance Social support/c
oping with breast cancer positive
Perceived benefits/ high (useful detection methods)
Self- efficacy/ high Perceived barrier/ blocking bad thoughts Perceived barrier/ high, financial issues Cur to action/ credible source,
encouragement
Information-seeking/ high Health information seeking/high
Doctor-patients relationship/weak Perceived susceptibility/high, environment Perceived susceptibility/ low Perceived benefits/ high, early detection Perceived severity/ low, curable Perceived severity/ high, pain
Cue to action/ motivation General health status/ positive Perceived barrier/ high, waiting till the last minute Knowledge about breast cancer/ high Perceived susceptibility/high, environmental
factor
Self-efficacy/ high, decision meaking Self-efficacy/ low, unable to do BSE Perceived barrier, lack of knowledge Perceived barrier/ no time Self-efficacy/low (BSE/overworry) Perceived benefits/high, health and
appearance-related
