Background
Cervical cancer is the second most commonly diagnosed cancer and third leading cause of cancer deaths among females worldwide [
1]. A substantial number of cervical cancer cases and deaths can be prevented if screened and detected early. Screening programs in high-income countries have reduced cervical cancer rates up to 65% over the past 40 years [
2]. This is in contrast to countries like Somalia where the rates continue to remain high (34.8/100,000) [
1]. This high prevalence of cervical cancer in middle- and low-income countries is largely attributed to either the absence of an organized screening program or a low uptake of screening tests [
3,
4].
Immigrant women residing in high-income countries have lower participation in screening tests as compared to the general population [
5] . Similarly, in Norway screening uptake among the majority population is higher than among immigrant women (Immigrants were defined based on the definition given by the SSB
“Immigrants are defined as those born outside of Norway to one or two foreign-born parents and four foreign-born grandparents”) [
6]. Women, especially from Somalia, who are among the largest non-Western immigrant groups in Norway, have specifically been observed to have low attendance rates [
7]. Though several intervention studies have been conducted to increase the cervical cancer screening attendance among immigrant women in high-income countries [
8‐
11], the results are modest as participation of immigrant women still remains generally low.
Our recent study [
12] among Pakistani and Somali immigrant women in Norway, documented individual, sociocultural and health system-related barriers that prevent these women from undergoing screening tests. In parallel, health care professionals interviewed in order to obtain their views regarding the reasons for low attendance to the cervical cancer screening program contributed with knowledge about specific barriers with immigrants [
6]. Building upon the opinions and wishes of both groups, we developed an intervention specifically targeting women from Pakistan and Somalia. Although we intended to learn from previous intervention studies with similar aims, our literature review showed that previous intervention studies often lack a detailed description of the design, reliable elements of the intervention itself and its implementation [
13,
14]. Also in other health care interventions targeting immigrants, authors seldom provide detailed descriptions about the process of development and implementation of interventions, what functioned well and what went wrong [
15]. We tried In order to fill this gap and to aid the advancement of future studies, this paper describes both the development and implementation of a randomised community-based intervention among immigrant women of Pakistani and Somali background living in Norway, along with the process, challenges faced and strategies used to overcome them.
Discussion
This intervention study was the first of its kind to be carried out among the two main immigrant groups in Norway. The intervention itself had a combination of elements that have been reported to be successful in other intervention studies carried out among immigrants in other parts of the world [
23‐
25].
The intervention’s theoretical basis was Heron’s framework and the results of our earlier study using the ecological framework. Following the Heron’s theory, the intervention can be mainly seen as prescriptive and informative, as we tried to give the participants advice on the uptake of pap-smear, and objective information about the benefits of participating in the screening program and harms of non-participation and instructions on how to proceed. From the facilitative point of view, our intervention was mainly supportive and motivational, as we tried to answer questions and fears expressed by the women. As regards the cathartic and catalytic elements, we allowed the participants to express their experiences, anger, hesitations during the interactive meeting, and being judgemental in deciding whether to participate in the screening program or not. Through these elements we have tried in every possible way to encourage the women in participating in the screening program without being authoritative or confronting, but helping them in making a personal informed choice for participation considering both the harms of not participating and benefits of participation.
The first practical challenge was related to the high probability of contamination linked to the division of areas in randomization and control areas. The groups of migrants we chose have extensive internal networks that were broader than our defined areas. For this reason we had to extend the areas, and thus lost randomization even though we had explored previously the existence of mosques or immigrant shops in between. The lesson to learn from this is, although we were geographically able to identify immigrant majority areas but we should not forget the tight bonds that exist within the immigrant groups, which extend beyond the geographical boundaries.
The second challenge was related to the recruitment of women. This is in accordance with many other studies that have highlighted the methodological challenges of recruiting minority groups into research trials [
26‐
29]. As previously reported by our group, the researcher should always try to develop a trust relationship with the participants, rather than just showing up at the door for recruitment purpose [
15]. One strategy to overcome this fear is to have researchers from the same ethnic background to eliminate the element of mistrust and we adopted this strategy in our intervention. Also, we adopted community-based recruitment through immigrant organizations, mosques etc. in addition to recruitment through personal contacts. All these strategies have been reported as being helpful in trial settings [
29]. Still, the attendance to the meetings was approximately one in four invited. Furthermore, the majority of young educated women had the opinion that a lot of this information can also be obtained from the internet, thus making it unnecessary to attend such meetings. However, among those who attended, we were able to ensure a highly diverse group regarding their level of education, age, and marital status and this information did attract the attention of older and uneducated women who are not familiar with digital technology and who probably have the lowest attendance to screening tests. Last, we encouraged diffusion of information whereby women who participated in the study will hopefully pass the information to others in their neighborhood.
The current intervention was a culturally adapted intervention in many respects, including targeting of language, gender, venue and development of material. Similar to our intervention study, other intervention have also been carried out among other immigrant groups [
8‐
11,
23‐
25]. The majority of them were community based and included the use of community lay-health workers, linguistically-appropriate and culturally-tailored educational materials or navigation assistance to overcome the barriers to access the services. These interventions have resulted in increase in awareness and knowledge about cervical cancer with increase in screening participation [
23]. Although we did not use community health workers for our intervention method, we did ensure that it was linguistically and culturally appropriate. Unlike other studies, we did not use written educational materials as women during the focus group discussion pointed out that sending of brochures, letters etc. would not be helpful. Rather, they wanted to have information given to them in seminar presentations by professionals. This strategy seems to have been correct in the light of our data, since approximately 30% among the women attending the meetings were unable to read any type of health related letters, brochures, posters etc. Similarly, the immigrant groups involved in this intervention came from oral and visual cultures, i.e. cultures that learn through listening and watching, and not through reading or writing. Inadequate health literacy among immigrant women has been reported by previous studies [
30,
31].
Among the participating women, 25% had never taken cervical cancer screening test despite 81% of the women had children and it is a common practice to take a cervical test during antenatal visits. Several factors might explain this fact. The type of questions raised by the participants after the seminars points to a low level of awareness and knowledge regarding screening test among the women. This has also been reported by other studies [
32]. Therefore, the information given by the researcher focused on cervical cancer in general, to raise the awareness and basic knowledge among the women. Lack of information given by the GPs to some immigrant groups has also been reported by our group (Møen, 2018 submitted). Additionally, as explained above, low health literacy and lack of knowledge about the health care system were widespread among the women. At the same time women had also expressed in the previous focus groups that they did not pay attention to the invitation letter sent by the cancer registry. We tried to address all these issues in our intervention. Once women got some information, the participants wanted to know more about the disease and its causes and how it could be prevented. After the presentation women seemed to realize the importance and sensitivity of the issue, as shown by the data that 78% of Pakistani whereas 90% of the Somali women replied that they will contact the GP for the test after attending this meeting.
Majority of the women who did not agree to take a pap smear were those who had already undergone screening either in the previous year (26% Pakistani & 15% Somali) or 2 years ago (46% Pakistani & 33% Somali). However, most Somali and Pakistani immigrants in Norway have challenges in coping with the new way of life in their host country. Solving their day-to-day problems in life may divert their attention away from participation in health programs and research and intention to take the test does not necessarily change behavior.
In order to see the effect of our intervention we plan to measure the effect of the intervention between the intervention and control areas by analysing the data from the national cancer register which records personal information on cervical cancer screening.
Conclusions
We have developed and implemented an intervention among immigrant women to increase their participation in cervical cancer screening following the existing recommendations for culturally adapted studies. Still, we confronted methodological and recruitment challenges that are described in this paper for the future advancement of the field. Although we had initially designed it to be a randomized controlled trial, we had to restrict ourselves to a community-based intervention with a non-randomised control group to avoid contamination. This is to say, we had to give up randomisation which is considered to be an important component of intervention studies.
Behavioural interventions are complex and when targeting them to immigrants adds further complexity [
33]. However, it is of fundamental importance to recognise the specificity of promoting health interventions within immigrant populations. Although, such intervention methods are more time consuming, need extensive resources and personal commitment, we hope to demonstrate in the near future that the effectiveness of interventions such as ours provides basis for the justification and commitment of resources to this approach in health promotion research. We further hope that this intervention will allow future researchers to learn from our experience and challenges and eventually develop more targeted interventions for immigrant groups.
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