Perceptions about cancer and barriers towards cancer screening among ethnic minority women in a deprived area in Denmark – a qualitative study

This study was carried out in Gellerup, which is a socially deprived suburban area in Aarhus, the second biggest city in Denmark with more than 345,000 citizens [21]. Gellerup has more than 5600 citizens and is characterised by an unemployment rate of 52.5, and 79.4% of the citizens are from non-Western countries, predominantly from the Middle East and Somalia [21, 22].

The Danish medical system is based on the principle of free and equal access to preventive care and treatment for all residents. This includes free access to nationwide cancer screening programmes and any follow-up visits and treatment derived from participation in cancer screening. Since the 1960s cervical cancer screening has been gradually implemented. Today the Danish women are invited to participate in screening for cervical cancer every 3 years when aged 23–49 and every 5 years when aged 50–64. The invitation is sent by digital mail recommending the woman to book an appointment at a general practitioner to have a cervical cytology specimen collected during a gynaecological examination [23]. All Danish women aged 50–69 are since 2007 also offered biennial breast cancer screening. In the screening invitation, women are offered a pre-booked mammography appointment at a screening hub [24]. The colorectal cancer screening programme was implemented in 2014 for citizens aged 50–74 and uses faecal immunochemical test self-sample kits, sent directly to the home, with the invitation to collect a faecal sample and mail it directly to a laboratory [25]. All programmes have a reminder system. Citizens, who do not participate despite invitation and reminder(s) receive a new invitation in the next screening round if they are still in the relevant age group, unless they have actively opted out of the screening programme. All communication and written material about the cancer screening programmes is in Danish.

The Danish cervical cancer screening programme has a participation rate of 74.5% for Danish women and 61.1% for ethnic minority women [8]. The Danish breast cancer screening programme has a participation rate of 79.6% for the Danish women and 57.3% for ethnic minority women [12]. The Danish colorectal cancer screening programme has a participation rate of 71.5% for the Danish women and 56.1% for ethnic minority women [13].

This was a qualitative interview study with ethnic minority women. The interview study was based on a phenomenological approach [26] aiming to describe the phenomenon ‘cancer screening’ as seen from the ethnic minority women’s lifeworlds. Thus, the phenomenological perspective allowed us to gain a greater insight through subjective experienced descriptions, and it served as a guiding principle for the research process.

The participants were recruited through snowball sampling [27] in different social societies in the area. Co-author TBR identified the eligible participants from her general practice surgery in Gellerup according to a maximum variation sampling strategy including ethnic minority status from non-Western countries (both first and second-generation immigrants) and ages between 23 and 74 years old [28]. TBR gave, with her patients consent, their contact information to first author CRT. In parallel with TBR’s recruitment, CRT interacted with the people in the area and contacted different communities and local cultural societies, for instance “the Neighbourhood Mothers”. This local society includes women with an ethnic minority background who do voluntary work in the community by supporting vulnerable women, to convey important information and build bridges between ethnic minority women and the Danish society [29]. CRT was introduced to the area by the Neighbourhood Mothers and recruited participants by a face to face approach. The study aimed to reflect the views of as many ethnic minorities as possible in the deprived area; therefore recruitment of participants with limited Danish language skills was relevant. With guidelines from CRT the Neighbourhood Mothers also recruited participants to the interviews. Additionally three experts in Somali, Arabic and Southeast Asian culture were recruited to individual interviews. They were members of different executive committees or handpicked based on their social engagement in the community. All eligible participants were given verbal and written information about the study in Danish or in their native language before the interviews.

The interviews were conducted from April to June 2019. The study included tree different types of interviews; semi-structured focus groups, group interviews with an interpreter and individual interviews with experts in different cultures. An assessment of the information power during the collection period determined the number of participants. Data was obtained until the collection of statements and perspectives were large enough to describe the phenomenon and reach the aim of the study in a satisfactory manner [30].

A semi-structured interview guide was designed to assess specific themes, while allowing the participants to communicate freely in their own words about their experiences and perceptions of cancer and screening [31]. It covered the following themes: healthcare seeking behaviour, health perceptions, knowledge about cancer, cancer prevention and early detection, knowledge about cancer screening, individual and socio-cultural barriers, attitudes towards the screening programmes and cancer screening invitations, coping strategies and facilitators to screening (see the interview guide, Table 1). In the last part of every interview a short presentation was held (15 min) by one of the researchers about cancer and screening to observe the participants’ responses to the rationale behind the Danish cancer screening programmes, and gain insight into the participants’ pre-existing knowledge about cancer screening. The participants were also introduced to a faecal immunochemical test self-sampling kit used in the Danish colorectal cancer screening programme. Furthermore they were introduced to two different types of HPV (human papillomavirus) self-sampling kits for screening for cervical cancer. These two self-sampling kits are not yet implemented in the Danish screening programme. The interview guide was based on discussions in the research team and used for the different types of interviews. The interview guide and the phrasing of the questions during the interviews were slightly modified according to the interview type and the participants’ language skills. In this study we present the results concerning perceptions and perceived barriers towards cancer and screening.

Prior to the interviews, the participants were asked to complete a consent form and a questionnaire designed by the research team. All interviews started with a short introduction to the study. The interviews ended with a debriefing where the participants were given an extra opportunity to speak one’s mind. After the interviews, the participants received a gift voucher (25 euros) as an appreciation of their interview participation. All the interviews were audio recorded and transcribed verbatim afterwards. Depending on the participants’ wishes, the interviews took place at a closed beauty salon, a meeting room at the local mall, or a meeting room in a community house. Immediately after each interview, the interview was discussed among the researchers and notes from the interview were compared and elaborated for later use in the analysis.

The focus groups were conducted by minimum two researchers (CRT, SBE and/or PK). CRT has experience with conducting focus groups and interviewing vulnerable people. PK is an experienced interviewer and researcher using qualitative methodology. SBE is knowledgeable about ethnic minority women and a skilled medical teacher. CRT was the moderator in the interviews and PK and SBE supplemented the discussion. The constellation with more than one researcher allowed all the researchers to concentrate on listening, understanding, taking notes and asking questions.

The group interviews were conducted by CRT, PK and a tele-interpreter. The participants were asked to complete the same consent form but in a translated version in their native language. The individual interviews were conducted by CRT. Preliminary data from the focus groups and the interviews with a tele-interpreter were added to the semi-structured interview guide for the individual interviews with experts for discussion.

The inductive content analysis of the interviews focused on the contextual meaning of the women’s perspectives, experiences and descriptions. The purpose was to explore the research questions (see the interview guide, Table 1) based on data instead of verifying data based on a predetermined theory. Therefore, the women’s perspectives on cancer and experiences with cancer screening evolved freely from the material rather than from established categories. As part of the preliminary analysis, the interviews were carefully read to obtain an overall impression of the material, and additionally the field notes from the interviews were used to contextualise the findings [32, 33]. The analysis began with an open coding of the material, followed by the development of subthemes and finally main themes. Initially this process was conducted by CRT, after which CRT and PK discussed the groupings of the codes to subthemes to main themes. The analysis was a dialectical interaction between the steps mentioned, before the results were final [34, 35]. The research team met regularly to discuss the analysis and results.

The sample was recruited through snowball sampling. In general participants often refer those whom they know and have similar traits with. This can be a potential limitation with the method [27]. We were aware about this disadvantage of snowball sampling, and therefore participants were recruited from different communities in the deprived area. We did not have women resign from participation, but sometimes more people showed up for the interview than expected. They were all eligible and thus allowed to participate. This indicated a successful strategy for recruitment of a potential vulnerable group. Other sampling methods may not have been able to provide these sensitive samples.

The variation in the sample was considered a strength to the study. The sample was a highly diverse group regarding their ethnicity, age, years of stay in Denmark, and occupation. This may have increased the representativeness of the information provided by the women. We varied the ethnic composition of the focus groups. Some focus groups were very homogenous with only Arabic or Somali women, and the others were more ethnically heterogeneous. Both compositions lead to a great dialogue and discussion. Some of the participants had a dominant personality, while others were limited by their inadequate Danish language skills - which sometimes made it difficult to moderate the focus group. This was handled by explaining that we were interested in getting as many different points of view as possible and asking the more quiet participants directly during the interview.

The findings in our study may be transferable to other ethnic minority women in deprived areas in a healthcare system which is publicly funded by taxation.

Emotional responses to screening like fear, pain or discomfort and embarrassment were mentioned by many of the women. These emotions did not, however, appear to be the most crucial barriers for screening participation. Fragmented knowledge about cancer screening and inadequate language skills were more prominent barriers among the participants. Previous quantitative studies also showed lower awareness of cancer warning signs and screening programmes among ethnic minorities [5, 36, 37].

Studies from other countries have confirmed that minority women have inadequate language skills which may hinder participation in screening. A study from 2017 [38] found language to be one of the dominant barriers to cervical cancer screening in Norway. Another study from 2015 [39] sought to explore reasons for lack of participation in colorectal cancer screening in England among South Asian minority communities. The study found that communication via written materials came across as being particularly inappropriate for the Muslim community due to the largely verbal culture of this community. Other studies found that language barriers undermined both the access and the quality of health services for immigrants [40, 41].

The results in our study showed cultural differences in perceptions about health care professionals. Many of the participants were not familiar with being a part of the decision-making process during the doctor visit. They explained how they were used to a paternalistic attitude from the doctors from their native countries. The participants experienced the Danish doctors to be more egalitarian and involved them in the decision-making process. This made some of the participants doubt the Danish doctors’ professional competencies, while others preferred the Danish way. This is confirmed by Napier et al. who claimed that: “the systematic neglect of culture in health and healthcare is the single biggest barrier to the advancement of the highest standard of health worldwide” [42]. The patient and the doctor communication could be hindered by cultural differences [42, 43]. This could potentially lead to a lower quality of care [44]. A high-quality delivering of patient care depends largely on the communication between patients and doctors [45].

This study adds to the existing literature with a new perspective. Other literature found that cancer was described as stigmatised. Studies from Norway and USA [38, 46] found that cancer evoked secrecy and shame for ethnic minority women. The participants in our study had the perception that everyone could get cancer and they did not describe it as stigmatised. On the contrary they showed great care for those whom they knew had cancer. Some of the participants were more religious than others in this study and had fatalistic views. The religious participants believed that it was God’s will if cancer was present. This is also reflected in the literature [47, 48]. Despite their religious beliefs it was acceptable to participate in screening and they were open to the idea. This in accordance with a study from 2014 [46] that found that religion might not be a prominent barrier towards screening participation.

The study’s findings indicated the potential and the need to develop a culturally adapted and tailored intervention to increase ethnic minority women’s knowledge and awareness about cancer screening. The different barriers for participating in screening are potentially modifiable with the right culturally adapted and tailored intervention based on different strategies such as educational, linguistic and awareness raising programmes.

The ethnic minority women in the study believed that cancer screening was only relevant if they had symptoms. They had fragmented knowledge about cancer screening and cancer prevention. Furthermore, they had inadequate language skills in Danish which made it difficult for them to interact with the Danish medical system. Attitudes to cancer screening were characterised by openness and the study showed positive and curious attitudes towards the offer to get screened. The verbal cultures among the participants and their networks were strong. They were an important source of information to each other. The insight from this study could serve as a basis for an intervention to increase cervical, breast and colorectal cancer screening among ethnic minority women. Men are also invited to colorectal cancer screening, but their perspectives were only captured by the women’s statements in this study. Further research should include an investigation of ethnic minority men’s perceptions about cancer and barriers towards cancer screening.