Screening for breast cancer among young Jordanian women: ambiguity and apprehension

Screening for breast cancer among youngJordanian women: ambiguity andapprehension

K. Al Dasoqi1 MPhil, RN, R. Zeilani2 PhD, M. Abdalrahim2 PhD &C. Evans, PhD3

1 Lecturer, 2 Assistant Professor, Faculty of Nursing, The University of Jordan, Amman, Jordan, 3 Lecturer, Queen’s MedicalCentre, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, UK

AL DASOQI K., ZEILANI R., ABDALRAHIM M. & EVANS C. (2013) Screening for breast cancer amongyoung Jordanian women: ambiguity and apprehension. International Nursing Review 60, 351–357

Aims: The goal of this study was to understand young Jordanian women’s attitudes towards breast cancer

screening practices in order to improve young women’s uptake of screening and early detection.

Background: The incidence of breast cancer is increasing annually among younger Jordanian women;

however, little is known about their attitudes towards breast cancer and associated screening practices. Young

women’s attitudes towards breast cancer must be taken into account when designing screening strategies and

interventions specifically for this age group. Screening strategies must also acknowledge young women’s

cultural context; however, little is known about how culture shapes their understandings and practices.

Methods: A qualitative interpretive approach was utilized to interview 45 young educated women about their

breast cancer views and screening practices. Data were analysed thematically.

Findings and Discussion: Four overlapping themes emerged: (i) young women should not think about it,

(ii) absence of a role model, (iii) cultural shame of breast cancer, and (iv) cancer means death and disability.

The study found high levels of apprehension and ambiguity related to breast cancer. This was associated with

the perceived impact of a cancer diagnosis on a young woman’s social status and family role. Family support

was perceived to be a necessary prerequisite for seeking treatment or screening.

Conclusions: Understanding young women’s perception about screening and early detection of breast cancer

is essential for policy makers and healthcare providers to design culturally appropriate and age-appropriate

health promotion campaigns and services.

Keywords: Breast Cancer, Cultural Care, Early Detection, Jordanian Women, Young Women

Correspondence address: Dr Ruqayya Zeilani, Faculty of Nursing, The University of Jordan, Amman 11942, PO Box 11942, Jordan; Tel: 00-962-(0)-5355000/ext. 23140; E-mail:[email protected].

Funding: This project was approved by Faculty of Nursing Research Ethics Committee (FNREC) at the University of Jordan. This project received a smallgrant from the higher institution of academic affair from the University of Jordan.Conflicts of interest: This is an original paper that has not been submitted or published in any other journal. The paper is part of a collaborative project forfour researchers (three from Jordan and one from the UK). The authors Khadeejeh Al-dasoqi, Ruqayya Zeilani, Maysoon Adelraheem and Catrin Evans areresponsible for all the contents in the paper, and we guarantee that this paper will not be published in any other journal in the future. No conflict of interesthas been declared by the authors.

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Clinical

© 2013 The Authors. International Nursing Review © 2013 International Council of Nurses 351

IntroductionBreast cancer (BC) is considered the most common malignancyamong women worldwide and in Jordan (World HealthOrganization 2012; Jordan National Cancer Registry (JNCR)2012). Statistics from the JNCR reveal that 864 women and 9men were diagnosed with BC in 2008. This accounts for 18.8%of the total new cancer cases; 70% of these cases were diagnosedat advanced stages (III–IV) when the disease is less responsive totreatment and the survival rate is lower. Only 30% of cases werediagnosed at an early stage (0–II). Bhikoo et al. (2011) statedthat one reason behind the high mortality rate of BC in Easterncountries was that women discover cancerous breast tumours ata very late stage.

According to Arkoob et al. (2010), 21.5% of Jordanianwomen who had BC were diagnosed below the age of 40. Unfor-tunately, these women experience more aggressive types of BCcompared with older women (Bhikoo et al. 2011). These pooreroutcomes may be associated with poor utilization of BC preven-tive measures by younger women (Alkhasawneh 2007). Thispaper reports a study that explored young women’s attitudestowards BC screening, and focused specifically on how culturemay shape their understandings. The findings will supportpolicy makers and healthcare providers to implement culturallysensitive screening programmes for young women.

Background and literature reviewRecommendations about early screening of BC in Jordan aresimilar to those worldwide. Women at normal risk shouldperform breast self-exam (BSE) monthly. Women aged 20–40years should seek breast clinical examination (BCE) once every1–3 years and annually after 40. Mammogram is required forwomen after the age of 40 once every 1–2 years and once every 2years after age of 52. Women at higher risk of getting BC aredirected by their doctors to perform BCE and mammogrammore often and at an earlier age (Jordan Breast Cancer Program(JBCP) 2011). Unfortunately, public awareness regarding theassociation between survival rate and early detection is inad-equate among Jordanian women. In a large survey of 5230 Jor-danian women aged between 20 and 70 years, only 44.8% ofyoung Jordanian women recognized the importance of BCE andmammogram (JBCP 2011).

In order to be able to understand the views of young Jorda-nian women towards BC screening, it is important to illuminatesome features of Jordanian and Muslim culture. Young age ischaracterized by openness to life and being optimistic (Clendon& Walker 2012). Similar to other Eastern societies, Jordaniansociety attaches great value to marriage and family formation.Marriage is socially expected of all women. In addition, mar-riage at a younger age is considered important to enhance the

chances of having a child (Haddad 2012). The diagnosis of BC,therefore, is usually perceived as a destructive disease, stronglyassociated with threatening the course of ‘normal’ life eventssuch as marriage, and social roles such as having a family(Haddad 2012; Joulaee et al. 2012).

Marrone (2008) argues that the extent to which Muslimwomen engage in particular health behaviours should be under-stood within their cultural context. Research has shown thatyoung women in Jordan may encounter obstacles to BC screen-ing related to cultural issues (Alkhasawneh 2007). For example,several studies have described that the need to expose privatebody parts during BCE and mammogram in front of somebodyother than the husband is perceived to be culturally unaccept-able for Muslim women (Alkhasawneh 2007; Bener et al. 2011).Muslim women are dissuaded by Islamic law from being alonewith a man who is not related by birth or marriage (Lewis2007). Accordingly, it is recognized that unless a health recom-mendation is seen to be aligned with Islamic beliefs andcustoms, Muslim women may not be comfortable seekingroutine BC preventive services (Matin & LeBaron 2004).Alkhasawneh (2007) shed light on this specific issue in a studyamong young educated Jordanian nurses (21–51 years). Thisdescriptive survey included 400 nurses working in different hos-pitals. It found that most of the women in the study were reluc-tant to seek medical help from male health practitioners.Current knowledge in this area is primarily derived fromdescriptive surveys. There are no in-depth qualitative studiesavailable on the attitudes of young women in Jordan about BCand its screening.

MethodologyAn exploratory descriptive design framed within a broad quali-tative methodology was utilized to explore the attitudes ofyoung educated women in the Jordanian context (Clandinin &Connelly 2000).

Ethical issuesEthical approval was obtained from the Ethics Committee atthe University where the study was conducted. Informationwas given to the participants through the use of invitationletters and information sheets sent through the student unionbox at each faculty. All participants were informed that theirinvolvement in the study was entirely voluntary. Prior to thecommencement of the interview, open and detailed informa-tion about the research purpose was provided, and writtenconsent was obtained. All personal information about partici-pants was stored in an anonymized format in a password-protected computer.

352 K. Al Dasoqi et al.

© 2013 The Authors. International Nursing Review © 2013 International Council of Nurses

MethodData were collected using semi-structured interviews. The focusof the interview was on exploring the participant’s attitudes andfeelings regarding BC and its screening practices. An individual-interviewing approach was used as this was a sensitive topicwhere a one-to-one approach was felt to be more appropriateto enable in-depth exploration of women’s perspectives(Silverman 2005). The data were collected by the primary inves-tigator (PI) and a co-investigator who have considerable experi-ence in conducting qualitative research. During data collection,an audit trail and reflective journal were developed. Data collec-tion and initial analysis took place concurrently and recruit-ment was stopped at 45 participants as the research team agreedthat no new knowledge appeared to be emerging. This studyadopted a constructivist paradigm following Clandinin &Connelly (2000) as the university students’ accounts are consid-ered to be socially constructed within the contexts of their inter-actions with the interviewers.

Letters of invitation to participate in the study were distrib-uted to all 18 faculties in the university. Only 53 students con-tacted the PI. They were all undergraduate students doingfull-time study at various stages (second, third and fourth yearsof study). In total, 45 women agreed to be interviewed (partici-pation rate about 85%, age ranges from 20 to 25 years). Thirty-eight women were single, and seven were married and hadchildren. Table 1 summarizes the participants’ demographiccharacteristics.

Data collection and analysis were conducted concurrently.Verbatim transcription of each interview was performed by thePI. This involved the translation of the texts from Arabic toEnglish. After that, an expert translator checked the accuracyand correctness of the translation and performed ‘back transla-tion’ to maximize the precision of the translation process. Sum-maries and reflections on each interview were made to facilitatethe understanding of contextual meaning and comparison. Ateam approach was used to thematically analyse the data follow-ing an interactive three-step process (Boyatzis 1998; Rubin &Rubin 1995). All four researchers separately read and coded thetranscripts. The emerging coding framework was then devel-oped in accordance to the input of the research team (Seale1999). Afterwards, they applied this framework to the remainingtranscripts although modifications were continually suggestedand made during subsequent meetings. In-depth analysis of thecodes enabled them to be collapsed and clustered into keythemes. Finally, interrelationships and underlying patternswithin the thematic framework were explored, including a con-sideration of negative cases. This ensured that the team devel-oped a clear conceptualization of what each theme represented.The team-based approach to analysis represented a high degree

of rigour within the analytical process and also enabled theresearchers to identify and examine their own assumptions(Tobin & Begley 2004). All these factors enhanced the trustwor-thiness of the findings.

FindingsThe analysis revealed four main themes: (1) young womenshould not think about it, (2) absence of a role model, (3) cul-tural shame of BC, and (4) cancer means death and disability.

Young women should not think about it

One of the most common findings was that all participantsthought they were not at risk of getting BC because they are stillyoung. They believed that only older women could get thisdisease, mainly if they are married and have children. One ofthe participants (YJW4) clarified this as:

Well, in our age we should not think of BC, it is not an illnessfor the young generation, but may be later in life when I willbecome above 30 years may be I will think about it and howto prevent it, not now.

Participants thought that BC is an illness that comes with age asit is connected to bodily development and changes related tomarriage, pregnancy and delivering babies. YJW13 expressedthis as:

Table 1 Demographics and background data of participants N = 45

Participants’ characteristics Number

Specialization

Health faculties 20

Scientific faculties 13

Humanistic faculties 12

Year of study

First year 15

Second year 13

Third year 8

Fourth year 9

Marital status

Single 38

Married 7

Residence

North 16

Middle 19

South 10

According to area

Urban 25

Rural 20

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Oh wait a minute, I’m still single and young, so why to bothermyself with breast self examination and scanning I believethat married women who have kids should do this, they are atrisk because of the hormonal changes when they breastfeedtheir babies.

Absence of a role model

Many participants stated that they did not have anyone at homewho performed BC prevention practices. They thought it wouldbe unusual for them to perform mammogram of the breast orregular examination for early detection of BC while no otherwoman in their environment had done this before. YJW7described:

I’m the youngest in my family, I have three sisters who areolder than me and they never mentioned that they did selfbreast examination or have a breast scan, my mother and mytwo aunts also never did that, so why you think I will do it, itwill look weird.

Other participants described they heard a lot about how toprevent BC. The main cited sources were TV and Internet. Theyunderstood the importance of these practices; however, nobodyat home had encouraged them to do these practices. YJW25described this as:

Well, maybe if there is some body at home such as my motheror eldest sister do self examination or go to the doctor for thismatter, I will do that for sure, this will encourage me to do it,but I will not do it by myself.

Cultural shame of BC

This theme emerged strongly as many participants expressedfeelings of shame that made them hesitant about following thepractices of BC prevention. The majority of participantsdeclined to seek routine BCE. Reasons given for this were thatmany healthcare providers are male and it is not culturallyacceptable to be examined by the opposite gender. It is expectedthat the participants’ mothers or close family members shouldaccompany them during the examination. The participantsmentioned they would feel shy to expose intimate parts of theirbody such as the breast to a male physician for examination orscreening tests. YJW34 described that:

I feel shy to go to the health care centre and let the doctorexamine me. I can’t guarantee that the doctor will be awoman, especially for breast examination . . . you know it isvery sensitive part, I will not accept to be examined by maledoctor; this is not acceptable here

Participants also mentioned they were worried about discover-ing they may have BC because of its implications for their lifeprospects. They feared that having BC at a young age wouldmean losing their chance to get married and have children.They thought that if men knew they have BC even if it wascured, this would prevent them from receiving proposals formarriage mainly because men would think that the illnesswould affect future pregnancy or that cancer may affect thebaby during breastfeeding. YJW42 confirmed:

In our culture if a man or his family knew that a girl has BCthey will not ask to marry her hand, the men want to marryto make a family, I mean a healthy family, and if the womanhas BC, nobody will attempt to marry her, they will be afraid.

Cancer means death and disability

Most participants reported negative attitudes regarding BC andits perceived fatal consequences in life. They reported anambiguous and pessimistic attitude towards the word ‘cancer’and connected it to ‘death’. BC was seen as a fatal, unmanageableand untreatable illness that cannot be prevented by early detec-tion practices. YJW5 described this as:

Cancer is a very dangerous illness . . . all cancers are verypainful. The patient takes chemotherapy and this makes hertired and needy . . . I hope the cure is from Allah but I’ m notsure they can be healthy as before especially BC it is very dan-gerous and can be extremely fatal.

A number of participants used one culturally specific expressionto refer to cancer. This was ‘khabeeth’ (malignant cancer), whichwas described as a very dangerous and rapidly metastasizedcancer that will eventually lead to death. One of the participantsstated that she avoids using the word cancer as it is very close tothe ‘death’. YJW17 stated that:

Here we do not talk about ‘that illness’, you know, people donot like to mention it [it refers to the cancer], it is somethingwe try to forget about it, you know ‘ that illness’ related to theend of life, we use the word ‘khabeeth’.

DiscussionWomen in this study were educated, had easy access to healthinformation through the Internet and were familiar withmodern medical practices. However, their cosmopolitanism hadnot had a discernible impact on attitudes to BC or its screening.Rather, their practices in this sphere were still strongly shapedby traditional Islamic religious and family structures. The par-ticipants of this study perceived BC as an illness of older womenwho are married and have children. They did not therefore seethemselves as ‘candidates’ for preventive action. This attitude



has been found among young women in many other Arabcountries such as Egypt, Saudi Arabia, Qatar and the UnitedArab Emirates (Remennick 2006). In our study, we have shownhow our participants’ views are shaped by a Muslim culture thatplaces a high value upon marriage, having children and fulfill-ing their families’ needs. Women feared BC as creating a poten-tial disruption to these roles, leaving the woman’s lifepurposeless (Epel et al. 2004). These findings are consistent withthe findings reported by Epel et al. (2004) and Remennick(2006). For example, although Israeli Arab women in Epelet al.’s (2004) qualitative study were over the age 50, theyexpressed similar attitudes towards the perceived danger of theBC screening over their social roles.

Hence, nurses should encourage all women, and particularlyyounger women, not to fear BC screening. They can explain tothem that they will benefit from the screening because earlydetection is better for prognosis and treatment (Remennick2006). Moreover, nurses providing family and community-based health care should stress the fact that BC can affect youngwomen, and explain the advancement in the diagnosis andtreatment of BC. Nurses and other healthcare professionals(HCPs) and organizations should modify existing materials onscreening. For example, the need for the practice of monthlyBSE should be emphasized, and all women including youngerones should be encouraged to seek medical help if they find alump in their breast.

Women interviewed in this study emphasized that theencouragement of close relatives, such as mothers and sisters,would motivate them to perform the examination protocols.Therefore, the lack of a family role model might be one of thereasons that hinder young women practising BSE. A role modelis defined as someone who serves as a positive and valuedexample to be imitated (Holton & Merton 2004). This personinfluences, guides and facilitates the advancement of othersbehaviours (Bartz 2007). When older women in the family, forexample, mothers, adopt such practices, they encourage andaccompany their daughters. Nurses should therefore motivateolder women to include their daughters in the performance ofBSE and spread the awareness about BC. This could be achievedby specific family-oriented health education programmes in dif-ferent settings (e.g. hospitals, healthcare centres, school nursesand the media).

The participants of this study expressed feelings of shamerelated to cultural issues that inhibit them from seeking routinebreast examination. They were discouraged by the thought of anexamination by male HCPs and expressed a need for a closefamily member to accompany them during the examination.They also expressed the need to guarantee modesty duringscreening of BC. These findings are consistent with what is

known about the Islamic culture (Hammoud et al. 2005;Marrone 2008; Simpson & Carter 2008). Islamic culture shapeswomen’s behaviours and particularly their need for modesty. Itis expected that Muslim women wear modest clothing and covertheir body and hair. Indeed, it is considered part of a Muslimwoman’s identity (Zeilani & Seymour 2012).This feeling isgrounded in their cultural and religious background, whichprohibits exposing the female body to unknown men. Manystudies conducted among Muslim populations have identifiedsimilar anticipated feelings of embarrassment and shynessamong women with regard to BC screening practices (Akram2009; Bener et al. 2011; Matin & LeBaron 2004).

The growing body of evidence in this area points to a need byhealthcare organizations to provide more culturally acceptableforms of screening. Nurses working with Muslim womenshould consider these findings by attempting to make arrange-ments that suit their needs. They should discuss issues related tothe early detection of breast lumps and the need to be examinedwithin their cultural context. For younger women, the presenceof a close relative during breast examination can reduce theanxiety from the test. Moreover, it is important that the nurseprovides specific explanation about the nature and purposes ofthe examination for all patients, particularly Muslims.

The participants of this study expressed fear and worryrelated to the diagnosis of BC. Many of them avoided using theterm ‘cancer’. These attitudes have been reported in manystudies of Muslim and Eastern populations (Epel et al. 2004;Remennick 2006; Shaheen et al. 2011). It is known that fear ofhaving BC can prevent people from adopting preventive prac-tices (Remennick 2006). This might be one reason why theyoung students were reluctant to perform BSE. This pessimisticview is deeply entwined with the perception of cancer as a fataldisease, which people have no power to change or prevent (Avci2008; Gany et al. 2006; Goldstein et al. 2002; Meneses & Yarbro2007; Scanlon 2004). Polla’n (2010) has argued that youngerwomen perceive BC more negatively than older ones. In the Jor-danian context reported in our study, this theme of fear wasexacerbated by inhibitions arising from cultural issues, particu-larly the fear of being unable to fulfil expected family or socialroles. Participants of this study had many suggestions in rela-tion to the fear of BC. Health promotion campaigns and mate-rials need to address this fear of a BC diagnosis by placing moreemphasis on BC survivors who have proceeded with their livesand who have gone on to successfully have families.

Findings drawn from this study are limited by the nature ofqualitative research and the sample size. Therefore, we shouldbe cautious about generalization to all young Muslim women.However, they are consistent with a growing body of researchindicating that young Muslim women encounter multiple chal-

Jordan 355


lenges to practicing BC preventive measures (Alkhasawneh2007; Arkoob et al. 2010; Avci 2008; Petro-Nustus & Mikhail2002; Remennick 2006; Yadav & Jaroli 2010).

Conclusion and recommendationsThis study focused on young female Muslim university studentsand attempted to capture their attitudes towards BC screening.Although they were a relatively well-educated sample, their atti-tudes were greatly influenced by their cultural and religiousbackground. BC was perceived as a painful and fatal diseasewhich could have a devastating impact on their social roles andlife. This disease was even more feared at a younger age for itspotential to disrupt and threaten the key socio-cultural func-tions of marriage and childbearing. It is hoped that HCPs andhealth policy makers will benefit from the findings of this studyto enhance early detection of BC. Examples of such action couldinclude the development and implementation of culturally sen-sitive BCE and mammogram practices (e.g. using only femalehealthcare providers), or training HCPs about the specific needsand views of young Muslim women (Remennick 2006).

Nurses should consider these findings and encourage youngwomen towards screening. In both national and internationalcontexts, educational programmes about BC among youngerwomen should be enhanced. These programmes should addressthe importance of screening and early detection and addressmisconceptions around BC. These programmes should bewidely distributed in order to reach women living in both ruraland urban areas. Findings of the current study might helpnurses and midwives working with young women from differ-ent socio-cultural backgrounds to have a better insight of theirattitudes towards BC screening. Attitudes of women in thisstudy would reflect on wider public attitudes about a majorpublic health issue. Although young women are at less risk ofBC at present (Epel et al. 2004), capturing their attitudes andneeds can inform the development of health education strate-gies and information resources (Shaheen et al. 2011). Under-standing the problem in the Jordanian context is importantbecause it has implications for the country itself and, indeed,sheds light on how this issue may be perceived in the wider Arabworld.

AcknowledgementsThe authors wish to thank the young women who participatedin the study.

Author contributionsKD was the principal researcher who was responsible for thestudy conception, collection and analysis. Other authors were

involved in the study design, data analysis, drafting of themanuscript, and administrative and technical support.

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Screening for breast cancer among young Jordanian women: ambiguity and apprehension