Understanding low colorectal cancer screening uptake in South Asian faith communities in England – a qualitative study

Key informants provided detailed commentaries about how their communities would be
likely to respond to an invitation to the BCSP. We present five main themes relating
to low uptake of CRC screening that were described across faith groups: limitations
posed by written English; limitations posed by any written language; reliance on younger
family members; low awareness of CRC and screening; and difficulties associated with
faeces. We also report suggestions to increase accessibility and uptake of screening.

Limitations posed by written English

Unanimously, key informants described how many South Asian elders eligible for CRC
screening would not be able to engage with the letter and accompanying information
that is sent by the BCSP, because they have limited ability to read and speak in English.

Some of the elderly […] don’t necessarily have English as their first language. (Hindu
Community informant: 2)

…quite a lot of the older people don’t speak English very well. (Sikh Community informant:
9)

In recognition of the language needs of the population, the BCSP offers translated
materials, which are available upon request by telephoning the helpline. However,
calling the helpline was perceived to require considerable motivation, potentially
in the absence of knowledge regarding what the recipient is seeking information about.

So what kind of person would ring [the BCSP helpline], it would be someone who is
very motivated to want to do it. Or very interested in these letters coming through
but they don’t understand it. (GP informant: 14)

Therefore, informants identified that variable proficiency in reading English would
make accessing translated materials challenging, and would be likely to require a
family member to mediate. Finally, even for those who do read English, informants
perceived that the BCSP invitation materials comprised too much information.

It’s a lot to take in […] It’s just too much, to be honest. (Hindu Community informant:
2)

Limitations posed by any written language

Communications using written words in any language were repeatedly described by informants as unappealing, and lacking impact and importance
within their communities, and for these reasons informants suggested that postal communications
were often overlooked. This lack of impact was vividly described in relation to the
Bangladeshi Muslim faith community, the majority of whom speak Sylheti, which is rarely
used in its written form, and whom were unlikely to be able to read in Bengali, meaning
that written translations of screening information would be of no use.

They don’t function in a written way […] written information does not give people
the ability to go and do what needs doing. (GP informant: 14)

It was noteworthy that across the faith communities, human interaction involving face-to-face
discussion, verbal descriptions, and demonstrations were described as the favoured
means of communication to effectively share information.

Our people are more visual learners […] they rather see and hear before they make
any decision. (Muslim Community informant: 6)

Somebody who is like 60 or 65 […] they probably need some human touch where people
can come and explain to them (Hindu Community informant: 11)

Informants recommended that these interactive approaches be undertaken within faith
and other community settings. Approaching community members in a familiar place, and
communally rather than individually, was endorsed as a means of increasing the understanding
and confidence of community members, enabling them to more readily engage in screening.

I think it’s coming into the community […] at our Mandir it works really well because
you’re capturing the audience in their home, as it were, and they feel comfortable
[…] as long as, of course, it’s in their language as well. (Hindu Community informant:
2)

Reliance on younger family members

Informants across faith communities reported that it was common for sons and daughters
to translate and interpret written materials for older members of the family, and
that support of this kind would be required for the BCSP invitation materials. Informants
suggested that participation in screening may therefore be heavily mediated by younger
family members, who may further make their own judgments about the importance of the
screening invitation.

She [my mum] said to me, there’s a letter for me from the doctor. I came and looked
at it but I didn’t put that much emphasis on the importance, I didn’t encourage her
to take up. (Muslim community informant: 3)

Informants also considered that community members would require help with collecting
and sampling faeces to complete the gFOBt kit, but that the personal nature of the
test would mean younger family members would be less likely to assist.

This is something very personal you know toilet is something you don’t dare – even
dare to ask children you know ‘can you do that?’ (Hindu Community informant: 10)

Low awareness of cancer and screening

Key informants reported low awareness of CRC and CRC screening within their communities,
and suggested that participation in screening would increase if communities were given
culturally accessible information about the purpose and value of screening, and the
practical side of gFOBt kit completion.

Unless they understood how important it was, they wouldn’t do it. […] you would need
to tell them what the facts and figures are, why it’s important for them to do it,
what the risks are. (Muslim Community informant: 8)

Informants also identified low awareness of cancer being potentially curable and reported
that cancer was perceived to be serious, frightening and final.

Cancer is one of those things that everyone regards as you can’t do anything about
it, once you get it you get it, and that’s end of. (Muslim Community informant: 8)

Informants representing Sikh faith communities described a particular reluctance to
disclose a cancer diagnosis or talk about cancer more generally which was linked to
low awareness within the community. This reluctance was explained in terms of a social
stigma surrounding cancer and fear of the potentially negative reactions from the
wider community that may be elicited in response to cancer.

…within the family someone will get cancer and they don’t talk about it. It’s just
a social stigma on things […] they think that ‘what will other people think?’ (Sikh
Community informant: 9)

Informants suggested that due to low awareness of screening, the BCSP invitation was
likely to be perceived as having come ‘out of the blue’, and that this perception
would be further reinforced by screening invitations being sent from a national source,
rather than from a familiar person or organisation (e.g. a GP). Informants proposed
using non-written mediums such as Asian TV or radio, to raise awareness of the BCSP,
and to prepare people for the forthcoming invitation and gFOBt kit.

I would get something on radio and that would get the message across and then at least
then they’ll be looking out for the letters. (Sikh Community informant: 9)

Informants suggested that awareness-raising should include positive information about
early-diagnosis and cancer curability to counteract some of the fear surrounding cancer,
and recommended that information be provided face-to-face and ‘in language’ to groups
within faith and community settings, incorporating gFOBt kit demonstrations, and opportunities
to ask questions. Health fairs using these approaches were already taking place within
some of the faith settings represented by informants.

Difficulties associated with faeces

Key informants suggested that the requirement to complete the gFOBt kit with samples
of faeces and to store the kit over a period of days would be considered unpleasant
and compromising to hygiene for some community members.

Doing something like this and having it out for 3 days with faecal matter on it is
totally abhorrent to them. (GP informant: 13)

Informants suggested that a simplified test that required a one-off sample might overcome
some difficulties with test completion, and proposed that community members be given
the option to take the gFOBt to their GP or practice nurse to seek explanation and
practical instruction.