Experiences of cervical screening participation and non‐participation in women from minority ethnic populations in Scotland

Abstract Background The introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood. Objective To explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities. Design Qualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed. Setting and participants This study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed. Results Many experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported. Conclusions Key differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work.


| INTRODUC TI ON
Cervical cancer is a leading cause of morbidity and mortality in women, with an estimated 570 000 new cases and 311 000 deaths worldwide in 2018. 1 However, cervical cancer is also one of the most successfully prevented and treated forms of cancer. Cervical screening aims to reduce cancer incidence through the early detection and treatment of precancerous changes and the introduction of screening in the UK and other high-income countries in the late 1980s led to a significant decrease in the incidence of cervical cancer and increase in the survival rate. [2][3][4][5] However, the decrease in incidence in these countries has not been universal with minority ethnic groups underrepresented in screening uptake and over-represented in cancer incidence compared with the majority White populations in some contexts. [6][7][8][9] In Canada, access of cancer screening is markedly lower among members of visible minority populations than the White population. 7 Similarly, studies in the United States report lower access to cervical screening in minority populations along with a higher incidence of cervical cancers and increased mortality rates compared with women from the majority White population. 10 While limited data exist for the UK as a whole, variation in cervical screening coverage by ethnicity has been reported at district level in England. 11 While non-participation sometimes results from informed decision making, 12 studies including or focussing on minority populations suggest lower awareness of cervical screening 13 and attitudinal and emotional barriers 14 including fear, embarrassment, shame and absence of symptoms also contribute to the reduced uptake of screening among minority population in the UK. However, the relationship between non-attendance and such barriers is complex with the same barriers also reported among individuals who do regularly attend screening. 15,16 Reducing health inequalities, particularly in cancer, is a priority in the UK with screening and early diagnosis key foci. 17,18 Previous studies exploring barriers in cervical screening have been conducted with individual minority and ethnically diverse populations; however, limited comparisons can be made across the studies to understand how experiences of minority populations differ due to contextual differences. The use of comparison groups within qualitative studies (eg groups with differing social positions such as patients, relatives and doctors, 19 or different lived experiences such as people with or without a condition 20 ) can facilitate identification of the group idiosyncrasies and phenomenological differences that impact the experience of health care, which often remain obscured or presumed inherent when using non-comparative methods. 21,22 This study aimed to explore and compare the experience of cervical screening participation and non-participation of women from different minority ethnic populations in Scotland, as well as White Scottish women, using qualitative comparison groups. We aimed to gain insights to support the development of interventions to reduce potential inequalities and support screening participation in minority ethnic populations in this region.

| Study design
This was an exploratory, descriptive study using qualitative comparison groups and individual, semi-structured interviews with women from four ethnic minority groups that represent the largest ethnic minority populations in Scotland 23 : South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed for comparison. Participants self-defined their ethnicity and ethnic group.

| Recruitment
Ten participants of each ethnicity were recruited through a specialist research recruitment company. Participants were recruited via an established database, social media and snowball sampling using a purposive sampling approach. Participants received £40 for their participation. The sample size was determined to ensure a variety of experiences within and across the groups.
Women were eligible if they were aged 30-65 years (inclusive); currently resident in Scotland; and self-identified as South Asian, East European, Chinese, Black African or Caribbean, or White Scottish. Participants were required to undertake the interview in English (with support of a friend/family if they wished). The exclusion criteria were as follows: informed consent not provided; previous or current diagnosis of cervical cancer; or ineligible for cervical screening (eg not having a cervix due to surgery or other reasons).

| Procedure
Recruitment and data collection took place between August and October 2019. Interviews were conducted in English, took place face-to-face in the participants' homes and were audio-recorded. appearing to be of importance to that participant. However, as we intended to compare experiences between groups, the topic guide was also used to ensure that all core topics (experience of participation; reasons for not participating; barriers/facilitators from their cultural perspective; views on acceptable approaches to women in their communities) were raised with every participant.

| Data analysis
Interviews were transcribed verbatim using a professional service.
Transcripts were read for accuracy by the interviewer (MN), pseudoanonymized and uploaded to a qualitative data management software (QSR NVivo12).
We undertook thematic analysis. 24

| RE SULTS
Fifty women were interviewed aged 30-62 years (see Table 1

| Experiences of participating in screening
Screening was universally reported as being unpleasant, but important, and many of the experiences described were common regardless of ethnicity. Similarities and differences in themes at the group level are demonstrated in Table 2. 3.1.1 | Response to invitation letter Many women across the groups described emotional responses to receiving the invitation letter relating to fear, dread or nervousness, recalling the physical or social discomfort experienced during previous examinations. Practical considerations were similarly common, including the need to plan round menstrual cycles, arrange childcare and/or time off work or wear clothes that would make the process simpler.
Dread, to start with. It's like, oh, goodness. Oh, God.
Like so I'm quite prudish so just the thought of having to be in that physical position of having it done.

(South Asian participant)
While those responses were frequent and common across the groups, a few participants described responses in keeping with avoidance, ranking screening as a low priority in their day-to-day life and perceiving themselves as low risk. These were only reported by women in the South Asian and East European groups but were unusual responses even within those groups reflecting individual differences rather than a common belief. It's always been within a reasonable timeframe, week, two weeks, to get in with the nurse and get it done.
(South Asian participant) Getting the appointment sometimes is very difficult because it takes two weeks.

| Experiences of not participating in screening
All the participants had attended cervical screening at some point in their lives and were still currently eligible. However, many women within and across the groups had experience of being out of date with their screening. Delays ranged from months to years and several participants were more than a year overdue for their screening at the time of the interview.
Four themes were identified in the participants' experiences of delaying their cervical screening: competing demands; knowledge and risk perception; emotions; and system or process barriers. (

| Knowledge and risk perception
A small number of participants talked of delaying their screening as they believed their risks were low or viewed screening as a low priority generally, often linking this to the absence of symptoms. Although an identifiable theme within the study, it was unusual within each group and was not seen at all in the Black African/Caribbean group.
And then you think, I'm healthy, I will just, okay, I've got to get an appointment but not…it won't be that urgent.

| Emotions
Embarrassment and fear of the pain were themes that were, again, identifiable across the study but unusual in each group, and emotional experiences for delaying screening were not identified at all in the Chinese group. It is also of note that, while pain was a common theme when discussing the experience of screening, only a few participants attributed pain for their delay in obtaining screening.
The first-time round they sent me the letter and I pretty much ignored it, I didn't want to go … it was painful, and it was difficult, and I was really embarrassed, and I didn't want to go back and go through that again.

| Ending the delay
Participants who had experience of being out of date with their screening were asked to reflect on how their delay had ended. Four themes were identified: changing focus of fear; persuasion from friends and family; GP/system reminders; and community awareness. (Table 3).

| Changing focus of fear
Some participants who had expressed concern over anticipated pain and embarrassment described how their focus changed over time with the attention shifting from the potential pain to the potential consequences of not being screened.
They're the things that make me feel like, oh, it's not going to be nice, but, no, an awareness of the importance of having it done for definite overrides the feeling of, oh, I don't want to get it done.

| Persuasion from friends and family, and GP/ system reminders
Reminder letters and phone calls from the surgery were often talked of as providing the impetus to stop delaying. However, some participants talked of requiring several reminders before they took action.
As well as letters and phone reminders, a few participants had been approached by their GP while consulting on a different matter. Such reminders and direct approaches were viewed positively by the participants in this study.

| Key differences in experiences
While many screening experiences were broadly similar across the groups, there were a few key areas that differed. These areas included going abroad for screening while living in the UK, routes to screening and accessing primary health-care services, language difficulties in health-care settings despite proficiency in English and not being sexually active by the age of screening commencement.
In addition to these group differences, several participants discussed experiences that had been particularly difficult. Although the particulars of each participant's experience were different, they each illustrated experiences of marginalization. (Table 4). In both groups, participants who had migrated discussed learning about Scottish primary health-care services through their social networks, with partners and friends who were either born here or had lived in Scotland longer than they had guiding them in how to register with a GP. Chinese participants also talked of being informed by their work or university.

| Screening abroad while living in Scotland
Migrant participants across the groups also discussed experiencing practical barriers to registering with a GP and therefore to accessing screening. For some, this related to short-term occupancy of rental accommodation and the likelihood of moving out of a surgery catchment area multiple times. For others, the need to register in person and during working hours, to provide evidence of migration status, acted as a barrier.
When I come over here, obviously I had to go and register with the doctor. However, on the beginning, I was renting a house every six months, so that was quite difficult to do, so we were changing all the time.
And eventually, when I moved to where I was living for a longer period of time, then obviously I went to a GP, and I registered myself.

| Not yet sexually active at 25 years old
Several Chinese participants talked about the fact that they were not yet sexually active when they received their first screening invitation. This experience was not identified in any of the other groups.
While one participant had decided not to attend screening because of this, other participants had attended for their screening. The experience of those participants varied significantly. Although both identified their virginity to the practitioners, while one participant was advised to wait until she was sexually active the other participant described how she had been screened regardless, which left her feeling anxious and tense about subsequent screenings.
My first experience was I was at uni and I went to see the doctor and then she gave me a cervical screen-ing…. I told her I wasn't sexually active or anything but she still went and did the screening, but I was quite sore, it wasn't something I anticipated at all…because of that soreness from the first… every time I go, I tense up, you know…I don't think the doctor believed until they did the smear and then she saw the blood.

| Marginalization
A number of particularly difficult experiences were raised by participants across the groups, with the exception of the East European group. Participants in the Chinese, South Asian and Black African/ Caribbean groups talked of difficulties related to ignorance, racism and the lack of representation in the training and experience of health-care practitioners. The experiences described related to both clinical and non-clinical staff, and while some experiences were described as 'not racist, just ignorant', others were experienced as racism.
I kind of realised that when I came to this GP here that you're not…they've never had any Asians before. He was surprised that I spoke English. … Just the comments that were made were I found quite demeaning.
…But it wasn't…I would not…definitely not racist, just ignorant.
(South Asian participant) The receptionists at that practice were really horrible.
That's why I changed GP. …One of them wouldn't talk to me when I approached them and went to the other receptionist 'you need to deal with her.' I was really, really down. …I think there was a racial thing going on there. Because it wasn't just me, it was any coloured person that went in. suggested that limited awareness among the recent migrants plays an important role in shaping the lower uptake in this population. 30,31 Risk perception and limited awareness of screening were unusual themes within each of our groups; however, it was the participants who had migrated as adults, especially from regions where screening programmes are not routinely offered, who discussed being unaware of screening prior to the receipt of their first invitation letter.
It is also of note that many participants who had migrated did not register with a GP for several years after arriving in the UK, despite eligibility to do so. Cervical screening is predominately provided through GP services but is available to individuals not registered with a GP through sexual health and family planning services. East European participants discussed travelling to Poland to access specialists for their screening, either instead or as well as screening in Scotland. This pattern has also been reported in England 37 and noted in relation to breast cancer screening in Scotland. 38 However, there were still instances where participants were not accessing screening in either country and it should not be assumed that nonattenders are obtaining health care elsewhere.
Participants reported experiences of racism, ignorance and feeling shamed. Previous research undertaken in the United States, 39,40 New Zealand 41 and Europe 42,43 has indicated that the experience of racial and religious discrimination in health-care settings not only impacts trust and satisfaction with the health-care services, but also acts as a barrier to accessing preventative care and leads to delayed help-seeking. The experience of enacted/felt stigma in relation to bodyweight 44,45 and cutting 46,47 has similarly been found to negatively impact health-care use and help-seeking in the United States and UK. Addressing stigmatizing beliefs and practices among healthcare professionals and supporting the development of culturally sensitive and knowledgeable practitioners may help to promote cervical screening participation in minority ethnic groups in Scotland.

| Strengths and limitations
We employed qualitative comparison groups. Although much work has been carried out with individual minority populations, limited comparisons can be made across the studies due to contextual differences. To our knowledge, this is the first study to qualitatively compare cervical screening experiences across groups of women from different ethnicities in the same contextual setting.
We intended to obtain a mix of demographic characteristics within each group. However, all the participants in the South Asian group grew up in the UK. While we did achieve a mix of demographics overall and elucidated some of the experiences particular to individuals who migrated as adults, experiences of South Asian migrants have not been captured in this study. Our sample was purposive and we did not attempt to represent any particular screening groups (eg non-attenders/attenders). It is possible that those who participated in the interviews experienced fewer barriers to cervical screening and that both shared and ethnic group-specific problems were less common than in the wider population. For example, all participants spoke English. However, although the participant's current language ability enabled them to participate fully, this had not always been the case and participants were able to reflect on past experiences and describe the ways in which language had impacted their experience of screening.
One researcher undertook all the interviews in this study. While there are arguments for having multiple interviewers in some study designs, qualitative comparison group methodology requires minimal variation between groups beyond their focal difference. 21 Having one interviewer was, therefore, a strength in this particular study.

| Conclusions
While many of the experiences reported were common regardless of ethnicity, key differences exist and offer potential opportunities to reduce disparity of access, including using alternative ways of identifying and communicating with women eligible for screening, maximizing co-incidental interactions with individuals from minority and migrant populations, and developing outreach work with populations not otherwise accessing health care. While we found many examples of positive supportive practice, there is also an on-going need to address stigmatizing beliefs and practices in health-care staff and support the development of culturally sensitive and knowledgeable practitioners to support screening in Scotland.

ACK N OWLED G EM ENTS
We thank all the study participants for sharing their experience and perspectives, Taylor

CO N FLI C T O F I NTE R E S T S
All authors declare no conflict of interest.

AUTH O R CO NTR I B UTI O N S
Mia Nelson contributed to research design, data collection, data analysis, interpretation of results and writing of paper. Andrea Patton contributed to data analysis, interpretation and writing of paper. Katie Robb, David Weller, Aziz Sheikh, Kalpana Ragupathy and David Morrison contributed to research design, interpretation of results and writing of paper. Christine Campbell contributed to research design, data analysis, interpretation and writing of paper.

PATI E NT O R PU B LI C CO NTR I B UTI O N
Patient and public contribution is planned for this research in the incorporation and translation of the findings into practice and policy. The patient and public involvement activity is anticipated for 2021 having been delayed from Autumn 2020 due to the COVID pandemic.

R E S E A RCH E TH I C S
Edinburgh University's Research Ethics Committee approval was obtained in August 2019 (study number: 1922 -Usher Institute).

DATA AVA I L A B I L I T Y S TAT E M E N T
Research data are not shared.