• Open Access

Immigrant women's experiences and views on the prevention of cervical cancer: a qualitative study

Authors


Abstract

Background

Many Western countries have cervical cancer screening programmes and have implemented nation-wide human papillomavirus (HPV) vaccination programmes for preventing cervical cancer.

Objective

To explore immigrant women's experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use.

Design

An exploratory qualitative study. The Health Belief Model (HBM) was used as a theoretical framework.

Setting and participants

Eight focus group interviews, 5–8 women in each group (average number 6,5), were conducted with 50 women aged 18–54, who studied Swedish for immigrants. Data were analysed by latent content analysis.

Results

Four themes emerged: (i) deprioritization of women's health in home countries, (ii) positive attitude towards the availability of women's health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check-ups.

Conclusion

The women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health-care providers. Therefore, information needs to be in different languages and provided through different sources. Health-care professionals should also consider immigrant women's difficulties concerning cultural norms and pay attention to their experiences.

Introduction

Cervical cancer is a global public health problem. Approximately 250 000 women die every year due to the disease, with the highest mortality in low-income countries.[1] Many Western countries have cervical cancer screening and have implemented human papillomavirus (HPV) vaccination programmes for preventing cervical cancer, yet in some countries, specific ethnic groups have lower attendance rates in these programmes than the majority of the population.[2, 3]

Human papillomavirus is a common sexually transmitted infection (STI), and 50–80% of sexually active women and men are estimated to be infected at some point of their lives.[4] There are more than 150 types of HPV; the majority are non-oncogenic low-risk types, which heal spontaneously while the high-risk types 16 and 18 cause 70% of cervical cancer.[5] Primary prevention strategies include having few sexual partners, condom use and HPV vaccination. The main secondary prevention method is the early detection of abnormal cell changes with the Pap smear. The best protection is the combination of HPV vaccination before first sexual intercourse and a screening programme with repeated Pap smears.[6] According to the recommendations from the Council of the European Union, cervical cancer screening programme should be population-based with a personal invitation and start at age 20–30 and continue until the age of 60 or 65 with an interval of 3–5 years.[7] Sweden has a nation-wide cervical cancer screening programme for all women aged 23–60. The women receive a letter of invitation every third year, and every fifth year from the age of 50.[8] The Pap smear is usually taken by a midwife in primary health-care centres. About 75% of the target group participate in the programme, and the incidence of cervical cancer has been reduced by 50% since the 1970s.[9, 10] HPV vaccination has recently been included in the general Swedish child vaccination programme for girls in 5th and 6th grades, with a catch-up programme for older girls. The vaccination is provided free of charge to girls in the target group but parents have to give their consent. It has been estimated that a vaccination coverage of 75% is needed to have an impact on the incidence of cervical cancer.[11]

Quantitative studies from the USA[12-14] indicated several factors associated with participation in cervical cancer screening among women from certain ethnic groups. Contact with health care was important. To have a female physician and a physician's recommendation as well as communication with the health-care professionals were also important factors.[12-14] Among Cambodian-American women, cultural norms, personal beliefs about regular check-ups and religion are crucial factors in the decision to have a Pap smear or not.[12] Younger age, greater number of years since immigration and acculturation increase the chance of taking the test.[12] The Hispanic population in USA have high incidence and mortality of cervical cancer.[15] Qualitative studies have found several factors to be barriers for a Pap smear in this group: cultural norms and beliefs, individual perceptions, existential considerations, language barriers and limited knowledge about HPV and cervical cancer.[16-18] Gender relations were also a main factor, because Hispanic men had an important impact on the women's health and health care.[19]

There are differences in acceptability of the HPV vaccination. A British study indicated a lower awareness of HPV and a lower acceptability of the HPV vaccine among ethnic minorities.[20] Similar results were recently found among immigrant mothers with low socio-economic backgrounds in the United States. Only 11% accepted HPV vaccination for their daughters, and in this case, lack of knowledge was the main barrier.[21] Other studies indicate that immigrant women would accept HPV vaccination for their daughters.[22, 23] Parents requested adequate information about HPV vaccine to be able to make an informed decision.[24]

Certain ethnic groups[12] and women with low socio-economic backgrounds[25, 26] have low attendance rates in cervical cancer programmes and a higher incidence of cervical cancer.[27] Approximately 20% of the Swedish population have an immigrant background, and many of those have emigrated from countries with no access to adequate health care or preventive screening programmes.[28] The HPV vaccination raises questions and concerns about whether it will be accepted among all ethnic groups.

The aim of this study was to explore immigrant women's experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use.

Methods

Theoretical framework

The Health Belief Model (HBM)[29] was used as the theoretical framework for the discussion in this study. This is a psychological theoretical model that explains an individual's behaviour from a health perspective. HBM describes change and maintenance of health-related behaviours and is used as a support for health behaviour interventions. The model includes several concepts for explaining a person's behaviour. Perceived susceptibility is the belief of the probability of acquiring a disease or condition. Perceived severity is the belief about the seriousness of the condition (perceived threat). Perceived benefits are the beliefs about the benefit of an action for reducing the condition. Perceived barriers are the belief of negative aspects of a health action, that is, cost, side-effects, unpleasant or inconvenient. Cues to action denote the readiness to take action, and self-efficacy is a person's confidence in his or her ability to take action. If an individual believes a recommended action will reduce the risk or condition, she or he is more likely to take action and follow recommended advice.[29]

Participants

Eight focus group interviews were conducted with in total 50 women who were recruited through teachers at two schools teaching Swedish for immigrants (SFI) in Uppsala, the fourth largest city in Sweden. In Sweden, all adult immigrants who are registered in a municipality and who do not have Swedish as their first language have the right to study Swedish free of charge. Approximately 60% of all newly arrived immigrants participate in SFI.[30] The criteria for inclusion were women aged 18–60 who were studying Swedish for immigrants, mastered Swedish in speech and writing, and agreed to share their experiences in a focus group. The participants received written and verbal information prior to the interview. The women represented many countries and cultures to provide variation in experiences and views.[31] Demographic data are presented in Table 1.

Table 1. Background characteristics of the immigrant women
Factorn = 50
  1. Middle East – Afghanistan, Iraq/Kurdistan, Iran, Jordan, Palestine, Syria. Africa – Egypt, Eritrea, Ethiopia, Somalia, Sudan, Tunisia, Uganda. Asia – Philippines, South Korea, Thailand. East Europe – Azerbaijan, Former Yugoslavia, Turkey, Ukraine.

Age
 18–2926
 30–3918
 40–546
Education level
 Primary school17
 Secondary school15
 College/university18
Marital status
 Married/partner38
 Single7
 Missing value5
Country at birth
 Middle east24
 Africa16
 Asia6
 East Europe4
Religion
 Muslim38
 Christian/catholic7
 Buddhist4
 No religion1
Years in Sweden
 0–217
 3–530
 >63

Focus groups

Interviews were conducted between February and June 2011 by the first author (MGr) and one observer. Data were collected through focus group interviews and a brief background questionnaire. All focus group interviews were carried out in Swedish, took place at school and included 5–8 participants of different ethnic background, with a mean number of 6,5 participants per group.[31] The interviews lasted approximately 1 h, and all, except one, were audio-recorded; the women of one group refused to be tape-recorded. An interview guide with open questions was used as a framework during the interviews.[32] The interview guide was based on questions from a previous interview study about cervical cancer prevention[33] and a pilot study. The interview guide contained broad questions, such as ‘What are your thoughts on cervical cancer?’ ‘What thoughts do you have on cervical cancer prevention?’ ‘What are your thoughts concerning prevention in your home countries and prevention in Sweden?’ ‘What are your thoughts on cervical cancer as a sexually transmitted infection?’ When needed, follow-up questions were asked.[32]

Ethical requirements as outlined in the Declaration of Helsinki were fulfilled.[34] No names of the participants were registered. The participants were informed that participation was voluntary and anonymous and that they could withdraw participation at any time without stating a reason, and with no negative consequences for themselves. All women gave their informed consent. After the interview, the participant were welcome to ask questions and were provided with the contact details to the researchers so that further questions could be asked later, if needed.

Data analyses

The focus group interviews were analysed by latent content analyses, according to Graneheim and Lundman.[35] With the inductive approach, texts should be interpreted objectively and without bias. The interview guide was not directed by HBM, as no deductive approach was used. The result, however, is discussed in relation to HBM.

The interviews were transcribed verbatim[35], and to obtain an overall picture of the data material, the transcripts were read several times. The analysing process started by the selection and marking of sentences relevant to the aim of the study. The marked sentences were divided into meaning units that were condensed and coded: the codes were divided into subthemes and themes.[35] During the analytical process, the researchers continuously referred to the interviews for verification. The structure analysis, the condensing and coding were made by two researchers (MGr and MO). To minimize the risk of bias, another author (TT) independently read the transcripts as well as the structure analysis and the condensing. Then, the entire research group participated in the analytical process with the coding and the themes, and the consensus was achieved through discussions.

Examples of the analytical process are presented in Table 2. All quotes are direct quotes as transcribed without grammatical corrections. The quotes are from different women and were transcribed directly from Swedish to English by a professional native translator.

Table 2. Examples of the analytical process
Meaning unit (participants quotes)Condensed Meaning unitCodeSub-themeTheme
…it's very difficult for us too if we have problem, I know I have that problem can become big problem in the future, but I can't go and tell anyone.'Difficulties in attending gynecological examinations though she know she would need itCultural point of viewStigma associated with attending gynaecological appointments1. Deprioritization of women's health in home countries
Therefore, it is great in Sweden…you can go and talk to the midwife. Book an appointment, and find out how the body works and talk about female problems.One advantage is being able to talk to the midwife about female problems and find out about how the body worksWomen's problemsPositive to be called to regular check-ups2. Positive attitude towards the availability of women's healthcare in Sweden
‘I think it is better to start vaccinate them …after menstruation it is better not 12 years, …when they begin women's life's when her organism have changed a few functions.Would like to wait with HPV vaccination until the daughter is olderReflections HPV vaccinationConcern about HPV vaccination3. Positive and negative attitudes towards HPV vaccination
When I came to Sweden, I received a paper and I did not understand anything. After 4 months, I read and understood about this test for cancer, but I could not ring and book a time.Received a notification but did not understand what it meant. Could not ring and book a timeDifficult to understandDifficulties in understanding the invitation and communicating with health professionals4. Communication barriers limit health-care access

Results

Four main themes emerged from the data: (i) Deprioritization of women's health in home countries, (ii) Positive attitude towards the availability of women's health care in Sweden, (iii) Positive and negative attitudes towards HPV vaccination, and (iv) Communication barriers limit health-care access. The women were positive towards the prevention of cervical cancer, although they had difficulties in contacting health care, understanding the letter of invitation and communicating with health-care professionals. During the interviews, the women expressed a lack of adequate knowledge about cervical cancer, HPV and STI and wanted more knowledge and information on the subject.

Cultural aspects influenced beliefs about prevention; some women considered only married women could undergo gynaecological examinations. Some women stated that women had lower value than men did; thus, women's health was not so important.

The women were not used to talking about women's issues in their countries of origin and appreciated the opportunity to be able to communicate with health-care professionals at check-ups in Sweden. They considered it was an advantage to be able to talk about STI in the focus group and expressed no moral judgements concerning cervical cancer caused by a STI.

Deprioritization of women's health in home countries

Double standard for the sexual behaviour of men as compared to women

The women believed a woman did not have sexual intercourse with a man before marriage; they were aware that it was common for a man to have sex before marriage. Several women questioned why women should always be responsible for prevention when men also spread infections.

Why must woman do everything? Doesn't a man also infect?

During the focus group interviews, it was evident that gender inequality in the participants' home countries influenced prevention. Some stated that a woman had lower value and her health was not as important as that of a man. If a woman died, it was not a major concern because the man could always remarry.

Yes, value not so good but the man is always first, second is woman. And think like this that diseases are not so important.

Stigma associated with attending gynaecological appointments

Several women emphasized differences between their home countries and Sweden. Some women said that a girl or an unmarried woman could not undergo gynaecological examinations as it was important to be a virgin before marriage. If an unmarried woman went to a gynaecologist, it could lead to negative social consequences and people would question why she went there.

…they who come from Muslim countries, I don't think they can do examinations for girls, maybe you understand.

Some women who had attended check-ups expressed fear of the gynaecological examination and during the procedure had felt shy and uncomfortable. For some women it was a problem to be examined by a male gynaecologist although for some women it did not matter, as it was his profession.

Sometimes it is nurse or doctor man, it is problem for me at least for Muslim women.

The women were not used to talking about women's issues and did not have the same possibilities to talk about women's health and sexuality in their home countries. If a woman had problems and needed health care, she could not tell anyone, even if she knew it would create problems for her in the future.

…it's very difficult for us too if we have problem, I know I have that problem can become big problem in the future, but I can't go and tell anyone.

Positive attitude towards the availability of women's health care in Sweden

Positive to be called to regular check-ups

All women appreciated the cervical cancer screening programme, mentioned the importance of preventing disease and valued the regular check-ups offered in Sweden. They believed cervical cancer was a serious disease and considered it important with check-ups as women go through a lot in life, including sexual relations and childbirth. Many of the women were not used to having regular health check-ups and were not aware of any organized cervical cancer screening programmes in their home countries. Women who had had a Pap smear had taken the initiative for the examination themselves.

I think it in Sweden, it's good that you can go for check-ups every third year if you feel a little different or not regular menstruation, go to doctor and ask.

The women felt it was valuable to be able to communicate about women's issues, that is, all aspects of the female body and its changes, symptoms and the risk of disease. Women who had given birth in Sweden were satisfied with the health care, considered themselves well treated by health-care professionals and emphasized that Sweden was a good country for women.

Therefore, very good in Sweden if you have a problem…you can go and talk to midwife. Can make an appointment and know how the body works, and talk about women issues.

Desire to learn about STIs

The women believed they had limited knowledge about HPV and cervical cancer. They were not aware that HPV is sexually transmitted. Several women said they did not have much knowledge about STI when they first came to Sweden. On the other hand, they had gained some knowledge after arriving in the country and considered it important to have adequate knowledge about STI. During the focus group interviews, the women expressed an interest in having more information about STI and cervical cancer.

In my country… Somalia I did not know Chlamydia or HPV. I only knew HIV, high blood pressure and diabetes. When I came here to Sweden, I receive more information about these diseases.

The women considered sex natural and did not express moral judgements about sexuality, and there was no shame in cervical cancer being caused by HPV. The women believed trust was important in a relationship and emphasized that both partners were responsible for not spreading STI. To have few partners and to use a condom was considered important for preventing STI, but few women used condoms as this was unusual in their home countries.

There is a big difference between Sweden and other countries, since in Sweden it is also a free life and freedom and is, everybody knows, they say have to know more about this disease.

You can use condom but the most important is that you are faithful to another and do not spread disease.

Positive and negative attitudes towards HPV vaccination

HPV vaccination important for the daughter's future health

The women were positive to the HPV vaccination programme and considered it advantageous that it was introduced into the general childhood vaccination programme. They would accept the vaccination for their daughters, as it was important to think about their future health.

The women emphasized the importance of adequate information for parents about HPV vaccination in school and wished that both mothers and fathers could receive the same information to make a decision about the vaccination. They proposed different sources of information.

You can make in school and leave paper to parents, advertising in TV, give paper with a lot of information or on a webpage you can too.

Concern about HPV vaccination

Some women had doubts about the vaccine, doubted if it provided 100% protection and wondered if you needed to attend check-ups after the vaccination. There was also concern about side-effects. Some women considered girls in the target group were too young and it would be better to wait until they were a little older and had become ‘women’.

I think it is better to start vaccinate them when they have after menstruation it is better not 12 years, I think it is better later after menstruation…when they begin women's life's when her organism have changed a few functions.

Communication barriers limit health-care access

Difficulties in understanding the invitation and communicating with health professionals

The women expressed difficulties in understanding the meaning of the letter of invitation to cervical cancer screening and asked husbands and others for help, or used a dictionary or Google. Many women also expressed difficulty in taking the step from having read the letter of invitation to contacting health care.

When I came to Sweden I received a paper and I didn't understand anything, after 4 month, I read it, and I understood that it was a cancer test, but I can't call and make an appointment.

During the interviews, the women also expressed difficulty in communicating with health-care professionals and found it difficult to describe symptoms and problems to physicians and other health-care professionals. Some women solved the communication problems themselves by booking an interpreter for health-care visits.

Yes, we have a problem and can't describe it, it is a problem to explain.

Discussion

Immigrant women were positive to the prevention of cervical cancer and perceived the benefits of cervical cancer screening programmes. They expressed the importance of attending regular check-ups and would accept HPV vaccination of their daughters. Regardless of this, several barriers were expressed, such as limited awareness about cervical cancer; cultural barriers; gender inequalities and difficulty in contacting health care due to language problems. These barriers diminished the women's ability to participate in preventive programmes.

According to HBM, a person's health behaviour is influenced by their experiences of barriers to a treatment or examination.[29] One barrier for participation in the cervical cancer screening programme was not being accustomed to having regular health check-ups in their home countries. The women stated there was little access to regular health care for the general population and women's health was not prioritized. Some women also stated that a social stigma was associated with gynaecological appointments, especially for unmarried women. In contrast, there is a long tradition of preventive health promotion and screening programmes in Sweden: the cervical cancer screening programme is well implemented, and women are used to attending regular check-ups. Swedish women generally attend check-ups, but have limited knowledge of why they do so.[36]

The women in this study were interested in talking about HPV and spoke openly on the subject. They considered cervical cancer a severe disease, and according to HBM, the perceived severity is a factor that can explain an individual's health behaviour. They did, however, express limited knowledge of HPV and cervical cancer. Although this barrier, limited knowledge, is common for immigrant women[16, 17, 20], the knowledge about HPV and screening appears to be limited among women in general.[17, 36-41] Even though the women acknowledged their lack of knowledge, they perceived benefits of the introduction of the HPV vaccination programme. Most women would accept the HPV vaccine for their daughters if they received adequate information. Information about HPV vaccination in Sweden is provided in several languages by internet links. This could make it easier for immigrants to be able to make an informed choice regarding HPV vaccination for their daughters. Parents' beliefs about HPV vaccination are important for acceptance of the vaccination[42], and there is a correlation between parents' beliefs and HPV vaccination, with some differences between ethnic groups.[43, 44] A perceived benefit and the belief that it was important to think about their daughter's future health were reasons for the immigrant women to accept the HPV vaccination. A barrier for acceptance of the HPV vaccination in school was that some women considered girls aged 11–12 years to be too young. One reason for this could be that the women did not understand the relation between HPV and cervical cancer and expected their daughters to be older at first sexual intercourse[45], or not have a sexual relation before marriage.

As the association between sexual transmission and HPV infection might discourage women from HPV vaccination and participation in cervical cancer screening[46], this has created a conflict between the need to inform each woman about the benefits and risks and the need for policy makers to achieve high coverage in screening programmes. Another interesting finding was that the women expressed no moral concerns regarding the link between HPV and sexual transmission.

Another barrier was mainly due to difficulties in understanding the Swedish health-care system. A major problem for the women was their contact with health care, as they did not understand the letter of invitation and did not know how to contact health-care facilities to make an appointment. The importance of invitation letters has been described[47, 48], and it is easy to understand that an invitation letter sent home in a language the women have not mastered is a large barrier against participation. For these women, one way of facilitating participation in cervical cancer screening programmes is to attach a brief translation of the content of the letter of invitation in the most common immigrant languages. Invitation letters with fixed appointments may increase uptake in cervical cancer screening and are probably more effective than invitations requiring the woman to make her own appointment.[48] For immigrant women, a fixed appointment might facilitate the ability to take action.

In ethnic minority groups, cultural factors and integration influence participation in cervical cancer screening.[12, 49] A higher degree of integration[49] and a long time since immigration[12] are factors that increase participation. One way of reducing barriers for participation is for health-care professionals to introduce immigrant women to preventive care; as a result, the acculturation process into the health-care system could be shortened.

The gender aspect of the HPV vaccine was broached as the women wanted both parents to receive the same information about HPV vaccination and emphasized the importance of equal information, a finding that is supported by other studies.[45, 50] The women considered that information was important for men as well, as both genders are responsible for the prevention of STI. One way of increasing knowledge about HPV and STI among immigrant women and men would be to provide information in an introduction programme for immigrants. A better understanding of the Swedish health-care system and an improved awareness of prevention of cervical cancer could possibly strengthen immigrant women's self-efficacy and increase primary prevention, that is, condom use, and decrease the barriers for immigrant women participating in cervical cancer preventive programmes.

The composition of the group in this study was both a limitation and strength. Teachers at the schools from which the women were recruited considered it unethical to include only women from specific ethnic groups; thus, women from many countries and different cultures were included. The wide cultural range of the participants assured that valuable input reflecting many different beliefs and views on the subject was acquired.[31] The results of the study should still not be taken as representative for all immigrant women or for immigrant women from specific ethnic and cultural backgrounds. As the women represented many countries and spoke many different languages, the authors chose to include only women who could converse in Swedish. This could be a selection bias. However, the use of interpreters would have demanded several interpreters in each focus group, and this could have affected the result and the women's open and sincere discussions. The participants represent the most frequent immigrant backgrounds in Sweden.[51] The results could have been different with immigrant women from other populations. It was our intention to be as clear as possible in the description of the method to allow the reader to assess the transferability of the results to similar contexts.[35]

Conclusion

The women were positive to the prevention of cervical cancer and appreciated being called for check-ups, but had difficulty understanding the letter of invitation and communicating with health-care professionals. The women had low awareness about cervical cancer and HPV and wanted to receive more information about cervical cancer, HPV and HPV vaccination. Most of the immigrant women would accept HPV vaccination for their daughters, but wanted adequate information for both parents before giving consent. Health-care professionals should take the various cultural norms of immigrant women into account and pay attention to their experiences.

Acknowledgements

The authors want to thank the recruiting teachers and especially the participating women, who openly shared their beliefs and views on the subject. We are also grateful to Birgitta Rönnqvist who took part in the interviews.

Source of Funding

The Swedish Institute for Communicable Disease Control funded this study.

Conflict of interest

No conflicts of interest have been declared.

Ancillary