569105 research-article2015

SJP0010.1177/1403494815569105HPV vaccination and Ethnic minoritiesL Zeraiq et al.

Scandinavian Journal of Public Health, 2015; 43: 408–414

Original Article

Attitudes towards human papillomavirus vaccination among Arab ethnic minority in Denmark: A qualitative study

Lina Zeraiq1,2, Dorthe Nielsen1,2 & Morten Sodemann1,2 1Migrant

Health Clinic, Odense University Hospital, Denmark, and 2Center for Global Health, University of Southern Denmark, Odense, Denmark

Abstract Background: Knowledge regarding the human papillomavirus (HPV) and HPV vaccine uptake among ethnic minorities is poorly explored in Denmark. The objective of this study was to explore attitudes and knowledge towards HPV vaccination among Arab mothers and their daughters. Methods: Five Arabic-speaking focus groups with mothers of vaccine-eligible girls and three focus groups with daughters were conducted. The participants were recruited through different social clubs. A phenomenological approach was used to investigate attitudes and knowledge of HPV vaccination. Meaning condensation inspired by Amedeo Giorgi was used to analyse the transcribed material. Results: A total of 23 women and 13 daughters were included in this study. The mothers’ knowledge regarding HPV was limited to the fact that HPV can cause cervical cancer. Two focus groups mentioned that HPV is a sexually transmitted disease and none of the mothers knew that HPV also causes genital warts. Both mothers and daughters acknowledged that the daughters have deeper insight into health-related issues. A gap of knowledge between generations was identified, as mothers and daughters obtained health information from different sources: mothers used the Arabic TV channels as a source of knowledge and daughters had a range of sources, e.g. school, internet, and Western TV channels. The consequence of these differences in obtaining knowledge is that mothers and daughters lack a common language to discuss health issues. Mothers were influenced by Arabic society, while daughters had created a hybrid of Arabic and Danish. Each generation had its own reasons for accepting the vaccine. The level of HPV knowledge and awareness did not affect their uptake decision in that all the participating mothers had accepted the vaccine for their daughters. Conclusions: Educational programs should target both mothers and daughters because mothers have an inadequate knowledge about HPV. This is likely to bridge the gap of knowledge between mothers and daughters, which constitutes a barrier between the generations. Key Words: Human papillomavirus, HPV vaccination, cervical cancer, ethnic minorities, knowledge

Introduction Most women are liable to be infected with human papillomavirus (HPV) at some point in their lives. HPV is a sexually transmitted virus, which is usually fought by the immune system. However, some women develop chronic HPV infection each year, which might cause cervical cancer [1,2]. Cervical cancer can be prevented through regular screening and the HPV vaccine. The vaccine is designed to protect against HPV types 16, 18, 11, and 6 and it targets girls before they become sexually active. The vaccine is offered, free of charge, to girls aged

12–18 years old. The parents have to give their consent [3,4]. According to a study done by the Danish State’s Serum Department, HPV vaccination covers 70% of the girls targeted. However, there are some geographical variations in the uptake of the vaccine in Denmark. There is a lack of Danish studies examining attitudes towards HPV vaccine and uptake among ethnic minorities, though such studies exist internationally [12–16]. Denmark’s population is around 5.6 million inhabitants, and ethnic minorities constitute around

Correspondence: Lina Zeraiq, Migrant Health Clinic, Odense University Hospital, Centre for Global Health, University of Southern Denmark, Odense, Denmark. E-mail: [email protected] (Accepted 30 December 2014) © 2015 the Nordic Societies of Public Health DOI: 10.1177/1403494815569105

HPV vaccination and Ethnic minorities   409 600,674 of the total number of inhabitants, of which 65% of this number originate from nonWestern countries such as Turkey, Iraq, Pakistan, and Lebanon [5]. A study conducted by the Danish Cancer Society and the Danish Medicines and Health Authority [6] targeted a group of woman aged 19–22 years revealed the presence of social differences in the distribution of HPV vaccine. The study doesn’t describe whether the social differences are cultural, religious, ethnic, or socio-economic determinants. The aim of this study was to gain insight into the Arabic mothers’ and daughters’ attitudes towards the HPV vaccine, and the reasons and conditions that prompt them to accept or reject this vaccine. Method

Table I.  The thematic interview guide. Themes from the interview guide 1 2 3 4 5 6

7

8

The participants This qualitative study comprises semi-structured focus group interviews with 12–18-year-old Arabspeaking girls and their mothers. The researcher established contact at three different social clubs by visiting them and introducing the project. Gatekeepers were chosen to help contact the mothers and to maintain their focus on the project, e.g. by reminding them of the schedules. The gatekeepers were the leaders of the social clubs and they knew the mothers and had positive contact with them. The gatekeepers facilitated contact with the mothers, who in their turn granted their permission to let their daughters participate in the current study. The interviews The interviews were conducted between January 2011 and January 2012, by an Arabic-speaking researcher, and they gave insight into the participants’ health behaviour and the conditions that affected their choices regarding the HPV vaccine. Focus groups are capable of highlighting the members’ methods of interpretations, interactions, and norms. This is particularly important when dealing with ethnic minorities who rarely participate in health research, and who are quite often excluded for linguistic reasons. This indicates that there are gaps in the findings in relation to Danish ethnic minorities as minorities can be excluded from Danish health research. Several considerations were taken to attract participants from ethnic minorities, e.g. sample size and dynamic, the environment, and the profile of the researcher [7]. All the interviews were held in the women’s community to make it easy for the women to participate in the study. Arabic was used in the interviews with mothers, while Danish was employed

Knowledge of HPV and the HPV vaccine The importance of religion in terms of accepting or rejecting the HPV vaccine The importance of culture in terms of accepting or rejecting the HPV vaccine The impact of the hierarchical relationships within the family (gender roles) The significance of the knowledge each mother/ daughter has concerning HPV The impact of the social environment (local community, family, friends, neighbours, work, school) in terms of accepting or rejecting the HPV vaccine Participants’ knowledge of and attitude towards existing prevention offers and recommendations (ex. Mammography, gynaecological examinations ~ cervical screening every 3rd year, contraceptives, childhood immunization program, travel vaccines) The applicable conditions to obtain the necessary knowledge regarding the health care offers

in the daughters’ interviews. Daughters were divided into two subgroups (12–15 and 16–18 years old). The thematic interview guide used in the study was based on the themes in Table I, which were elaborated during the interviews. As the first author was bilingual, she conducted all interviews with both mothers and daughters. On average, each interview lasted for 90 minutes. Data analysis Data were analysed by means of Giorgi’s phenomenological analytic method [8–10] and Kvale’s approach to qualitative research [11]. Meaning condensation was used as a tool in the process of analysis. According to Giorgi, the analysis of interviews comprises four steps: (1) the analyst must gain an overall impression of the data, (2) the meaningful units of the participants’ statements must be identified, categorized, and coded, (3) the content of the individual meaning bearing units under each coded category is made abstract, (4) the meaning of each coded category is to be summarized and followed by an analysis of its salience [9]. All data from both mothers and daughters were analysed and then compared in order to find common themes. Ethics The project was approved by the Danish Data Protection Agency and the Regional Scientific Ethical Committees for Southern Denmark. The general frame of the project took into consideration the Helsinki Declaration guidelines. The participants were provided with verbal and written information in

410    L. Zeraiq et al. Table II.  Characteristics of mothers participating in the focus groups. Focus group

Number of participants

Focus group 1 4

Ancestry

Years in Denmark

Employment

Language skills

Three Palestinians born in Lebanon, one Lebanese

Between 20 and 25

All speak Danish at different levels and need an interpreter occasionally.    

Four Palestinians born in Lebanon, One Lebanese

Between 17 and 23

All Palestinians born in Lebanon,

Between 17 and 25

Five Palestinians born in Lebanon, one Iraqi

Between 16 and 23

One healthcare assistant. One healthcare mediator. One course participant. One housewife. One healthcare assistant. One course participant. Three housewives. One on sick leave. One housewife. One course participant. One on early retirement. Two on sick leave. Three in internship. One unknown.

All Palestinians born in Lebanon

Between 17 and 26

    Focus group 3 5     Focus group 5 4       Focus group 6 6     Focus group 8 4      

Arabic and Danish about the project and its aims. Participation in the project was voluntary, and all the participants signed the informed consent. The participants were also informed about ethical issues concerning confidentiality and their right to withdraw from the project. Results Participants’ characteristics Mothers. Eight focus groups comprising four to six women from a total 23 participants who had Lebanese (n=2), Iraqi (n=1), and Palestinian (n=20) backgrounds (Table II). Nine women had a daughter participating in the focus groups and two women had two daughters in the focus groups. Participants who had a Palestinian background were born in Lebanon. These interviews were held in Arabic. All women came to Denmark during the 1980s and 1990s. Their levels of education and employment were diverse and the majority of the women had problems in speaking and understanding Danish. Many of them used an interpreter or a family member for translations of everyday life contacts with Danish society (Table II). Daughters. Three group interviews with 13 daughters were held in Danish, and each group comprised four or five girls. They were all born in Denmark. All

One social worker. One hairdresser. One on sick leave. One unknown.

One good Danish skills, the others use an interpreter or family member to mediate the Danish language  Poor Danish skills, all use an interpreter or family member to mediate the Danish language   

All speak Danish but some use their husbands to translate.     Two good Danish skills and two use an interpreter or family to translate.  

the girls had either gone to high school or were in elementary school (Table III). Each girl had a mother participating in the focus groups. After the fourth focus groups had been conducted, no new themes emerged and data saturation had been achieved. Meaning condensation resulted in two main themes, which were selected according to the aim of this study. The themes were “Barriers and access to knowledge of HPV and HPV vaccine” and “Handling knowledge on HPV vaccine in everyday life.” Sources, access, and barriers to knowledge of HPV and HPV vaccine The main source for the mothers’ knowledge on HPV vaccine was their General Practitioner (GP), who described the benefits of the vaccine to them. Another source was the Ministry of Health, which sent HPV information letters to the population. The mothers with good Danish skills understood the content of the letter, while those who lacked Danish language skills received a translation from their daughters. Some mothers knew about the HPV vaccine from their daughters who knew about the vaccine from teachers, campaigns, or friends. Few read about the vaccine in magazines. I can’t read or write and there is a lot I don’t know. My daughters they supervise and explain different issues to

HPV vaccination and Ethnic minorities   411 Table III.  Characteristics of the daughters. Focus group

Number of participants

Ancestry

Age (years)

Education

Focus group 2 Focus group 4   Focus group 7  

4 4

All Palestinians born in Denmark All Palestinians born in Denmark

13–15 15–17

5

All Palestinians born in Denmark

15–17

All in Elementary school, grade 7–9 Three in Elementary school, grade 9–10. One in high school Two in elementary school grade 9. Three in high school

me. I swear there are many situations where I am asking what is this and what is that. (Mothers F3-45)

case with all vaccines. So I expect the same with this one [the HPV vaccine]. (Daughters F7-06)

In this way language skills became an obvious barrier for the mothers to attain more knowledge on the HPV vaccine. The mothers often referred to their sources in vague terms, for example “the other said” or in the passive form where the source is not identified, for example “it is said.” The daughters, on the other hand, specified and identified the sources, for example, “I read it,” “I’ve been informed by the teacher,” “I’ve searched the web.” All participating mothers accepted the vaccine for their daughters. The mothers’ main concern was to prevent cervical cancer, whereas the motivator for the daughters’ acceptance was their mothers.

In two of the focus groups with the mothers, they discussed that HPV is a sexually transmitted infection. Only one mother had worries that boys can also be infected with HPV-related cancers. None of the mothers seemed to have knowledge about the liability of HPV to cause genital warts or that cervical cancer has several stages, and nobody requested information about the side effects. The daughters’ primary source in obtaining knowledge was the Internet—both English and Danish web pages. Only a few mothers were interested in the Internet and many of them did not know how to use it. The daughters have also cited other sources of knowledge like the school and TV programs. Daughters’ knowledge of sexually transmitted diseases (STDs) was not restricted to HPV; they also shared knowledge on syphilis, AIDS, herpes, genital warts, and chlamydia. A barrier for getting more knowledge was the mothers’ difficulties in tackling and speaking openly about the cancer diagnosis. Quite frequently the mothers referred to cancer with the term “the disease” or “the evil disease” without mentioning the word “cancer”. This difference between how the mothers and daughters expressed themselves can be explained by the fact that the daughters have lived their entire lives in Denmark, where education is mandatory. This is not the case for the countries where the mothers had originally come from. The mothers grew up in conservative societies in the Middle East, where education is not mandatory and is not considered a priority for females.

At my place it was my mother, who wanted us all to have the vaccine. (Daughters F7-23) Yes, our focus was primarily cervical cancer; this vaccine prevents it [cervical cancer]. (Mothers F8-11)

The mothers mentioned several times that the vaccine prevents cervical cancer, while the daughters provided concise answers related to the function of the vaccine. This showed that the mothers’ knowledge about the vaccine was very limited compared with the daughters more wide-ranging knowledge. The mothers’ social network, which comprised mainly other Arabic-speaking mothers, had a limiting or even fear-inducing impact on the mothers’ perception of the purpose of the HPV vaccine and its effects. There were people who began to say that it was possible that it [the vaccine] could damage other organs in the body. There were many people who were afraid of it. (Mothers F1-22) One can be infected through sex. It is a sexually transmitted disease. (Daughters F7-54) You see, a vaccine is usually the virus itself, but either dead or a weak version. When it is injected in your body, your immune system will remember it [recognize it] and prevent the real virus if one gets infected. This is the

Handling knowledge on HPV vaccine in everyday life Mothers’ knowledge of the functions of vaccines in general also included travel and childhood vaccination programs. This showed that they all took active part of the Danish vaccine program. Furthermore, all of the mothers also had a positive attitude towards

412    L. Zeraiq et al. preventions and followed the guidelines even in cases that lead to physical and mental discomfort, e.g., mammograms and cervix smear. I think it’s good. I have got the examination [cervix smear] twice. Sometimes I have been scared on my way there [to the doctor]. (Mothers F1-119)

The mothers came up with constructive actions in everyday life that could put more focus on the vaccine and provide the population with more knowledge. The mothers believed that the information campaigns regarding HPV primarily should target their daughters. However, they demonstrated an interest in knowing more about HPV and suggested that this knowledge could be attained by participating in debates related to health topics. They argued that the debates should be held by doctors and in the local area, otherwise attendance would be very limited. They also referred to language-related problems, and suggested that such debates should be conducted in Arabic or to use an interpreter in case they were be held in Danish. As she said [another mother]; send the doctors to the schools where they can teach our children, then our children can tell it to us … Reuters agency [comparing children with a news agency, reporting to parents]. (Mothers F3-260)

The daughters were obviously more used to different technologies in their everyday life. Their sources of information were the Internet, TV, and teachers. They spoke Danish fluently, but they all expressed that they had difficulties in speaking Arabic, especially when it came to health-related issues. The daughters watched mostly American programs, in addition to Danish. Many of them did not watch Arabic TV because of their poor Arabic language skills. The daughters acknowledged that they did not invest enough effort to improve or maintain their Arabic language skills. I don’t watch Arabic at all. It is only if you have entered the living room and your parents are watching TV or something … . (Daughters F4-252)

The mothers had no interest in the Internet and they expressed being sufficiently updated on healthrelated issues by watching Arabic health and lifestyle programs on TV. Very few mothers watched Danish TV during everyday life. Although all of them have lived in Denmark for more than 16 years, they still had insufficient skills in the Danish language. The results in this study showed that we are dealing with two generations: the older generation is

shaped and dominated by Arab norms and traditions rooted in the Arab culture, while the younger generation is shaped by both Arab and Danish cultures. Social relations in everyday life became important to the mothers as the local community was one of the important sources of knowledge underlined by the mothers, and it was the social arena where they interacted and socialized with other women. The daughters lived in the same community, but they had other social arenas where they interacted and socialized with the broader majority community. The daughters identified themselves as having a hybrid identity with a sense of belonging to Danish and Arabic ethnicities. Such differences in the identities of the mothers and their daughters entailed a set of differences in lifestyles and behaviours of the two parties. Communication between mothers and daughters was explained as tense with some misunderstandings, in that daughters were fluent in Danish and weak in Arabic, while the mothers were fluent in the regional dialects. Daughters struggled at times to convert information they had acquired in Danish into a language that was not meant to be a medium for health-related issues. The consequence was that daughters didn’t have satisfying mother–daughter discussions. The daughters, in general, found it embarrassing to talk about intimate issues with their mothers and consequently resorted to friends or other female relatives to talk about such topics, e.g. sex and STD. It is like hush hush [talking about STD]. (Daughters F7-523)

Discussion The study showed differences between mothers and daughters in terms of their awareness and knowledge of HPV vaccine and cervical cancer. The mothers without participating daughters had the same level of knowledge and awareness concerning HPV vaccine as those mothers with participating daughters. However we don’t know anything about their daughters’ level of knowledge or attitudes towards the vaccine. Each generation had their reasons for accepting the HPV vaccine. Mothers were driven by a feeling of anxiety that motivated them to avoid cervical cancer and therefore they accepted the vaccine, while the motivator for the daughters’ acceptance was their mothers. Similar results have been shown in other studies [19,21–22]. STDs, religion, language barriers, culture, and existing prevention interventions were not factors that curbed vaccination coverage; these results have been supported in past studies [12–15,21–22].

HPV vaccination and Ethnic minorities   413 Unlike daughters, mothers did not mention HPV’s relation to genital warts and STDs. This observation was also consistent with previous studies [15–21]. In relation to sex, none of the mothers mentioned that they feared that the HPV vaccine might prepare their daughters for sexual activity, as in a previous study [12]. Several mothers referred to language barriers as an obstacle that hindered their understanding of how the Danish health system operates, and Arabic programs were crucial for them to gain access to new knowledge. These factors had also been found to be important determinants in past studies [20,24–25]. This kind of transnationalism is beneficial because the mothers can stay updated on health-related issues and be able to manage their own health. Arabic TV channels might give them a sense of belonging to a community. However, it could also indicate a lack of confidence in terms of receiving help from this system. Therefore, they resort to information from their native countries. This leads to continued isolation from the Danish society [26–27]. In harmony with another study, the mothers acknowledged that their daughters had a better understanding of sexual issues and were more aware of their way of living [20]. Yet daughters didn’t discuss STD or sex with their mothers because they found it embarrassing. Arabic language exists in two forms, one consists of the regional dialects (only a spoken form) and the other is Modern Standard Arabic (MSA) which consists of both a spoken and a written form. MSA is taught in schools in the Arab world and is considered the language of academia. For instance, all diseases and anatomical terms can be expressed in this variety. One consequence is that mothers who have never gone to school or never had an elementary level of schooling will face several difficulties in understanding MSA. Also, the daughters who grew up in Denmark and did not have the opportunity to receive instruction in MSA lack the skills in this variety and do not understand it. When together, mothers and daughters speak the Arabic regional dialect. This dialect originates from the mothers’ home country and is used for daily informal communication. Furthermore, all the daughters speak Danish and most parents often have difficulties in speaking and understanding Danish. Thus mothers lack the necessary communicative skills in Danish and daughters cannot convey the information for their mothers because they do not speak MSA properly. Their language skills become a barrier and they speak different languages that demonstrate their different attitudes and lifestyles. This might create serious barriers and misunderstandings between generations in the family.

None of the mothers mentioned the word cancer explicitly during the focus groups. Many Arabs believe that cancer equals death. Some Arabs believe that referring to the disease by its name might place the speaker and hearers in danger of being inflicted by the disease. This observation is documented in other studies [23,24]. Such phenomena may explain why the mothers embraced the HPV vaccine in spite of their fear of cancer, and they had their attention focused on the prevention of cervical cancer and not STDs. The main contribution of this study is that there is a lack of knowledge concerning HPV among ethnic minorities. Mothers who are the decision-makers concerning health issues are isolated from Danish society as they don’t speak Danish properly and they obtain their health knowledge from Arabic TV programs. Daughters are educated and integrated in Danish society, but don’t speak Arabic properly. The absence of a common language between mothers and daughters has created a gap in knowledge between generations. There are some limitations connected to the current study. The mothers are not necessarily representative of other minority women and not all mothers had a daughter participating in the focus groups. The mothers in this study might have more positive views towards vaccination and therefore they participated. This might indicate as well that mothers who didn’t accept the vaccine didn’t join the focus groups and probably wouldn’t allow their daughters to join. The participants’ responses can be influenced by one or more members of the group, which might constitute a limitation in this study. Moreover, some informants might withhold important information when sensitive topics are discussed, or they might adjust their opinions to match what they think the researcher is expecting to hear from them [28]. An advantage in the study was that the interviewer was bilingual as she spoke both Danish and Arabic, which made it possible to recognize disagreements and conflicts that took place during the interviews. Sharing the same cultural background as the participants might have caused some important information to be omitted, as the participants might have thought the researcher was having prejudiced or lacked confidentiality [28]. However, the interviewer avoided this risk by not interpreting the ideas and the issues they discussed, rather she asked the participants about their experiences and opinions in cases when their answers seemed to be very obvious. Conclusion and implications to practice It is important to pursue the spread of knowledge about HPV and HPV vaccine among ethnic minorities. The health care sector needs to acknowledge that

414    L. Zeraiq et al. mothers and daughters have different reasons and motivators for accepting the HPV vaccine. When it comes to information about the vaccine both mothers and daughters should be targeted, primarily because mothers use their daughters as a source of information. One problem is that some Arabic-speaking women do not know that HPV is an STD and can cause conditions like genital warts. Reducing the risks of getting HPV depends on the ability of spreading the proper knowledge and to enable the minorities to have access to information in their mother tongue. The language barrier is one of the main factors preventing the mothers to gain the required knowledge related to health issues. Both mothers and daughters lack a common language that can be used as a platform to exchange and discuss their knowledge and perceptions regarding health issues and prevention. Acknowledgements The authors would like to thank Jalal El Derbas for his proofreading and all the participants who contributed to this study. We would also like to thank the leaders of the social clubs who facilitated the contact to the women of this study. Conflict of interest None declared. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. References [1] Ottesen B, Mogensen O and Forman A. Gynækologi. Munksgaard Danmark. 2008 [2] Danish Cancer Society. http://www.cancer.dk/livmoderhalskraeft-collumcancer/aarsager-livmoderhalskraeft/ [3] Sundhedsstyrelsen (www.sst.dk). Reduktion af risikoen for livmoderhalskræft ved vaccination mod humant papillomavirus (HPV) – En medicinsk teknologivurdering. MTV nr: 9, 2007. [4] Statens serum institut (www.ssi.dk) EPI-NYT. HPV vaccination – tilslutning. Uge 6, 2010. [5] Danmarks statistik. Befolkningens udvikling 2012. Published October 2013. [6] http://www.cancer.dk/vidunderlivet/vaccination/vaccinationstal/udligning-af-social-ulighed/ (accessed 02 March 2015). [7] Halkier B. Fokusgrupper. Samfundslitteratur og Roskilde Universitetsforlag. 2006

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