Characteristics of the sample
Table 3 shows a summary of the demographic characteristics of interview participants. No illiteracy was reported and five out of 81 respondents (6%) reported having completed university education.
Table 3: Demographic characteristics of participants in FGDs
Characteristics
|
Frequency
|
Percentage (%)
|
Age
|
Mean=39.3 (SD=10.8)
|
|
25-34
|
32
|
38.6
|
35-44
|
26
|
31.3
|
45-54
|
14
|
16.9
|
>54
|
9
|
10.8
|
Socio-economic groups (SEG)
|
|
|
High
|
14
|
17.3
|
Upper-Middle
|
36
|
45.7
|
Lower-Middle
|
20
|
24.7
|
Low
|
10
|
12.3
|
Occupation
|
|
|
Employed
|
5
|
6
|
Housewife
|
76
|
94
|
The results of the study focus on three main components of the pre-motivational stage of the I-Change model (38): knowledge, cues to action and perceived risks. Each component or theme contains subthemes accordingly as follows.
Knowledge about cervical cancer and cervical cancer screening
The results of the interviews revealed that women’s knowledge and information about cervical cancer, the signs and symptoms of disease, as well as cervical cancer testing, was neither specific nor explicit. Tacit knowledge is embedded in practical experiences, not achieved through systematic or formal trainings, and not from standard documents, and it is nonspecific. By contrast, explicit knowledge is evidence-based, specific and precise knowledge which could be articulated and communicated systematically (50).
The results revealed different subthemes for this area, which are discussed below.
- Lack of explicit knowledge on cervical cancer
Most of the women had heard about cervical cancer in general, but had not specifically mentioned the exact name of cervical cancer in the discussion. According to participants, older women have less knowledge than the younger generation. The majority of interviewees were also unable to differentiate between cervical cancer and other genital cancers (e.g. uterine cancer) and did not know the affected organ.
“We don’t know anything about this (cervical cancer), we just know that a test is taken every six months or every year to see if a woman has uterine cancer or not.” (participant 1, 56 yrs.)
Half of the participants (almost equally distributed over the socio-economic classes) referred to cervical cancer using nonspecific terms, mainly “women cancer” or “uterine cancer” without differentiating uterine and cervix.
“…among the general population, I don’t hear anyone say cervical cancer, it is called uterine cancer.” (participant 13, 56 yrs.).
Participants from low and lower-middle socio-economic groups (SEGs) reported the least accurate and explicit knowledge about cervical cancer in general, while inaccurate knowledge (content and frequency) was almost the same among all SEGs.
- Limited knowledge about signs and symptoms
Most women did not recognize signs and symptoms of CC specifically and explicitly. They did not differentiate between CC and sexually transmitted infections (STIs), nor their signs and symptoms.
“I think this cancer is very silent and the one that is affected does not see any symptom and cannot identify the disease herself.” (participant 55, 50 yrs.).
Several women stated hemorrhage (vaginal bleeding) and vaginal discharge (extensive and smelly) as hallmark symptoms.
“…it starts from the inner uterus and extends to the abdomen. One of our relatives was affected and within six months, when in hospital, her uterus was removed but it was rooted in her abdomen… I guess the first symptom is severe bleeding.” (participant 4, 33 yrs.).
Others, however, referred to a lack of pain or symptoms.
”…cervical ulcer does not have any specific pain sometimes, no consequence and symptoms, and if any symptom exists it could be foul-smelling vaginal discharge, for example.” participant 55, 50 yrs.).
Occasionally interviewees mentioned other signs such as abdominal pain, genital burning and irritation. A few women mentioned warts as a sign of cancer and some others disagreed.
“In my opinion (vaginal) irritation, itching, abnormal and smelly discharge can be a sign of having cervical cancer.” (participant 67, 44 yrs.).
Women in the upper and lower-middle SEGs expressed more accurate knowledge about signs and symptoms than the high and low SEGs. Inaccurately assigned STI-related signs and symptoms to cervical cancer were very frequent among all groups.
- Lack of specific knowledge on testing purpose, frequency and timing
The majority of women knew about cervical cancer testing but their knowledge in most of the cases was nonspecific and inaccurate concerning the purpose and frequency (timing) of testing.
They did not differentiate between testing for cervical cancer screening (CCS) and testing for sexually transmitted infections (STIs).
The cervical cancer screening test was referred to by different names: Pap smear, cancer testing, women testing. It was very frequently stated that this test (Pap smear testing) diagnoses sexually transmitted infections and cancer (not specifically cervical cancer).
“…this test (Pap smear) in fact shows infections in the body of women or disease inside of the uterus.” (participant 61, 40 yrs.).
Almost all women who had previously taken the test stated that the first time they had undergone testing was when they visited their health care provider (physician, gynecologist or midwife) for reproductive health reasons after marriage, during pregnancy or after giving birth. In addition, most of the women stated that they performed the test whenever their health care provider (HCP) advised to do so.
“…we don’t know more, we only heard the name (of the test for cancer) and we only perform tests which are advised here (in the Public Health Center).” (participant 2, 31 yrs.).
A few women were aware of the correct frequency of testing as recommended in the national program for CCS. They expressed broad knowledge about timing and frequency of testing, including twice a year, annually, every three years, etc., and the majority named annual testing
“As far as I know we should perform this test every year; if three consecutive tests are negative then there is no need to do it annually anymore, and we can do it every three years. When we have passed reproductive age and after aging, it (testing) also needs to be done, and likewise after surgery (hysterectomy) which I had, after extraction of my uterus. I mean when you don’t have ovaries or a uterus this test still needs to be done.” (participant 55, 50 yrs.).
In addition, interviewees mentioned different ages and circumstances as starting time for testing, including after marriage, before pregnancy, after giving birth (delivery), after turning 30 years old, from age 20 to 60 years, and after the menopause. Several women indicated that women should be examined and tested for disease ( i.e. STIs) after marriage.
“….after marriage, some problems (STIs) happen…when a woman feels that her discharge smells or is discolored, she should consult a physician.” (participant 69, 26 yrs.).
Most women believed that samples are taken from vaginal discharges and did not differentiate between CC and STIs regarding care and management. The majority of interviewed women explained the testing as taking samples on slides and a few of them talked about taking samples in liquid mediums. A few participants noted that there are several ways to diagnose cervical cancer, and mentioned biopsy and diagnostic curettage as additional options. Only one interviewee specified HPV testing.
“…I know that a sample (for CC testing) is taken from (vaginal) discharges of women and sent to the laboratory for examination…. If the result of the test is suspicious then the test should be repeated and in the case of an infection, it is cured with pills and medicine. It is important for women to be tested every six months and sometimes every year.” (participant 4, 33 yrs.).
While the high SEG had least knowledge about testing in general, most women in all groups expressed inaccurate knowledge about frequency, purpose of testing and type of specimens taken, and did not differentiate between STIs and cancer.
- Deficit in knowledge about risk factors and causes
Most women wrongly mentioned cervical cancer as a consequence of STIs, more specifically prolonged/chronic infections, and also described family history as a main risk factor for CC. In addition, they listed other risk factors, including multiple partnerships, ignoring personal hygiene (cleaning and washing the genital organs, daily changing of underwear), unhealthy nutrition (e.g. high intake of fast food), air pollution, stress, and wearing tight underwear. Only two participants mentioned smoking tobacco and alcohol use as possible risk factors.
“…an unmarried person may be affected by this disease (cervical cancer) because of hereditary reasons.” (participant 63, 26 yrs.).
The majority of women mentioned chronic and untreated STIs as the underlying cause for cervical cancer.
Women very frequently used terms of hereditary and genetic (more than 48 times) causes, and infections (STIs in general, more than 85 times) as being a cause of cervical cancer. Almost none of the women differentiated between cleanliness and hygiene in their statements and expressed an implicit understanding of hygiene to control risks.
“I do believe that cervical cancer and other women cancers (related to genital organs) are caused by simple infections which are caused by our negligence such as neglected personal hygiene. We should be concerned about our sexual relations a lot, also about our underwear which I think is highly important.” (participant 72, 27 yrs.).
Awareness of CC risk factors was highest among the high SEG, but most importantly, inaccurate knowledge about the main cause of cervical cancer (believed to be heredity) and misconceptions about hygienic measures for self-protection were highly stressed by almost all women.
- Appropriate knowledge on conditions/ requirements for testing
The majority of women were aware of practical preparatory measures and recommended considerations required before attending CC testing. They stated practical terms and conditions for testing including sexual abstinence, avoiding the use of vaginal douche and vaginal treatments (gel and cream), and recommended scheduling testing when not the menstruating.
“In general no (vaginal) discharge should exist (at the time of testing) to avoid incorrect results of the test and a week should have passed after menstruation. Additionally, sexual intercourse should not have taken place in the previous 24 hours (before testing) and (vaginal) ointments should not be used during the previous 48 hours.” (participant 74, 26 yrs.).
All groups excluding the high SEG elaborated on in detail the required preparedness before testing.
- Limited and unspecified knowledge on preventive measures, care and treatment
Almost all women indicated not knowing how to prevent cervical cancer; they indicated that they were simply advised to perform the test.
“In fact, we don’t know what to do or not to do, to avoid facing the problem (of getting cervical cancer) we do not know anything in this regard at all, we only know that a test is being taken, every six months or year, to identify if uterine cancer exists or not.” (participant 1, 56 yrs.).
Most women understood that CC testing was a way to detect STIs early (without mentioning HPV) and they believed that STI prevention was essential in cervical cancer prevention. A few participants mentioned condom use as a preventive method. Only two women mentioned the availability of a vaccine and its preventive role; both women were highly educated.
The majority of women considered cervical cancer as a treatable disease if diagnosed early, by extraction of the uterus and chemo- or radiotherapy, before metastasis to other organs.
“I think it is curable if diagnosed at an early stage, chemo- and radiotherapies exist, eventually treatment is available, in the past they may not have been able to diagnose it but now I see people who had problems which have been solved.” (participant 27, 53 yrs.).
Low and upper-middle SEGs demonstrated more correct knowledge of preventive measures than the low and high SEGs; however, the frequent referral (>95 times) to personal hygiene and cleanliness (in general terms) as a preventive measure was notable among all SEGs.
Inaccurate perceived risk of cervical cancer and screening
In general, the proportion of women who very frequently cited their lack of perceived risk were almost the same in all SEGs. There was an overall low perceived susceptibility and high perceived severity among participants regarding cervical cancer. Most women believed that CC was a curable disease. However, extended social and cultural consequences of cervical cancer seem to lead to an increased perception of the severity of CC, causing some fear.
This theme was categorized under two subthemes which explain three main factors related to risk perception: misperception of cause, misconception about STIs and cervical cancer, and avoidance of negative thinking.
- Low perceived susceptibility to CC due to misconceptions
Insufficient knowledge about the cause of cervical cancer resulted in misconceptions regarding vulnerability to cervical cancer. Overestimation of the role of heredity of cervical cancer was an important misconception among women; most women considered themselves not at risk because there was no (known) history of cervical cancer in their family. They specified insufficient hygiene as an important risk factor for CC and perceived an association between STIs and cervical cancer. As a majority of women evaluated their personal hygiene measures as being sufficient to prevent infections, they did not consider their CC risk as high. Those measures (e.g. changing underwear, washing themselves after sexual intercourse, not using toilet paper) pertain to cleanliness rather than specific hygienic measures.
“I don’t think (I will get cervical cancer) because I observe hygiene always and we didn’t have such a thing (cancer) in our family.” (participant 40, 45 yrs.).
A common social belief in Iran says that when you think of something it eventually happens to you, and this scares people away from exploring their concerns like cancer.
“Thinking about (cervical cancer) is very bad, I don’t like to think about it… when you are exploring more (about a disease) it seems that the disease grips you more, it (testing) is a useless cost and I should not consider it (cervical cancer) as important anymore.” (participant 27, 53 yrs.).
- Aggravated severity due to social and cultural misperceptions
Most women reported a high perceived severity of cervical cancer; severe consequences also included disruption of family life and social image.
“… (women are) concerned that when it is known that they have cervical cancer, their life will be disrupted.” (participant 58, 43 yrs.).
Lack of perceived cues to action regarding cervical cancer
Most women reported few cues to action from their environment, also due to an existing stigma on CC in their community, and discrimination against women. Two different types of cues were mentioned, external cues and internal cues.
- External cues:
- Culturally limited interpersonal and public communication about cervical cancer
All women strongly emphasized the need for health communication and education on cervical cancer and CC testing. Most women indicated that talking about issues related to the sexual organs including cervical cancer and testing is stigmatized according to cultural and social norms.
“Cervical cancer is not an issue which you expect an affected woman to talk about with her friends and relatives and to open up about it. Usually she keeps it secret, like breast cancer; she does not like others to know about her disease. For this reason, we don’t know how many of our relatives are affected, there is no communication about it, and we know cancer in general but not specifically.” (participant 10, 26 yrs.).
In comparison to other groups, the low SEG indicated a lack of communication about cervical cancer more frequently as a barrier to awareness. Different information sources were listed, including HCPs, television, peers (relatives and volunteers) and others (internet, publications). Face-to-face counseling by public health services and health care providers (HCP) including physicians, midwives and others, was mostly preferred by women, as these consultations were mentioned as being transparent, and provided the opportunity to pose questions. The lack of interaction (i.e. posing questions and receiving answers) was regarded as the main disadvantage of health education through the public media (e.g. television).
“The Public Health Center is credible (for health education); when I am in a Public Health Center I feel comfortable because I can ask my questions to doctors here, but in that case (TV education) I cannot ask questions to anybody.” (participant 47, 35 yrs.).
Women indicated being confident about having the comprehensive knowledge about HCPs (particularly doctors) and trusting them. They were concerned that senior professionals spend less time with patients for health education.
“Doctors do not open the discussion and don’t have time… when you ask more questions, doctors get upset.” (participant 36, 48 yrs.).
A need for health education was commonly expressed among all SEGs, with a higher frequency among high and upper-middle SEGs with the above-mentioned preference scheme.
- Health Care Provider (HCP) as main external prompt
Being advised to go for screening by HCPs appears to be a very important cue encouraging attendance. Most of the women stated that they only participated in tests when their HCP advised them to do so; otherwise, they would not go for tests unless they had symptoms that might point to an STI.
“Whenever my doctor advises me to go for a test I go otherwise I would never go by myself, unless I had complaints.” (participant 39, 50 yrs.).
The advice of a health care provider was mentioned more often as the main motivation for testing among women in the upper-middle SEG than among women in the other SEGs
Internal cues:
- Socially imposed self-deprioritization and misinterpretation of symptoms
There was a general lack of perceived cues to initiate CC testing (apart from HCP advice); for most women, CC testing, and more generally personal health care, was not a main priority. Many women indicated that Iranian women prioritize family and household as a social value and criticize caring about personal health. Limited awareness of symptoms of CC is causing a misinterpretation of being healthy in the absence of visible symptoms, and neglecting routine examination and testing as follow-up.
“Usually the last thing Iranian women have on their mind is (taking care of) themselves and their priority is thinking about other issues.” (Participant 1, 56 yrs.).
All groups very frequently expressed discrimination against women, self-deprioritization and misinterpretations of symptoms as barriers to participation in cervical cancer testing, with a slight dominance among high SEG.
A summary list for each main theme and related subthemes is provided in table 4.
Table 4: Themes and subthemes of women’s awareness of cervical cancer and screening
Theme
|
Sub-theme
|
Tacit/Implicit knowledge about cervical cancer and screening
|
- Lack of explicit knowledge on cervical cancer
- Limited knowledge about signs and symptoms of cervical cancer
- Lack of specific knowledge on cervical cancer testing, its frequency and timing
- Deficit in knowledge about risk factors and causes of cervical cancer
- Appropriate knowledge on conditions/ requirements for cervical cancer testing
- Limited and unspecified knowledge on preventive measures, care and treatment concerning cervical cancer
|
Inaccurate perceived risk of cervical cancer and screening
|
- Low perceived susceptibility to CC due to misconceptions
- Aggravated severity due to social and cultural misperceptions
|
Perceived cues to action regarding cervical cancer and barriers to action
|
- External cues:
-
- Limited interpersonal and public communications about cervical cancer due to cultural considerations
- Health provider advice as powerful external prompt
- Lack of internal cues:
-
- Socially imposed self-deprioritization , lack of symptoms and misinterpretation of symptoms
|