EL DOCUMENTO UNICO DE IMPORTACION (DUI)

Examination of attitudes to bowel cancer screening among participants and non-participants at FS screening suggested key differences in patterns of decision-making. The HBM provided a useful theoretical framework through which to interpret the main findings of the content analysis. The issue of susceptibility emerged as a key factor in the decision to participate in screening. Among attenders at FS, perceptions of susceptibility were high. Almost 60% of attenders reported they felt susceptible to bowel cancer in some way. The perceptions of increased susceptibility were described in terms of friends or family members having bowel cancer or cancer, or the experience of bowel symptoms which led them to be more concerned and feel vulnerable about their bowel. Indeed, these factors were by given most interview respondents who described perceptions of susceptibility, as their main reason for taking part in the screening programme. Notably, it appeared that any experience of cancer among family or friends, not specifically bowel cancer, triggered perceptions of susceptibility to bowel cancer and a more positive attitude to bowel cancer screening among those who attended FS.

In contrast, non-participants in FS screening showed striking differences in attitudes relating to susceptibility. Those who did not respond to the questionnaire (NRs) and those who responded that they were not interested (NIs) often described feeling unsusceptible to bowel cancer. This was expressed in terms of feeling healthy, having no bowel symptoms and/or having no family history of bowel cancer, and was mentioned by about a 1/3 of interview respondents in both groups. Among the non-attenders, a mixture of feelings relating to susceptibility were expressed. Almost 20% described not feeling susceptible to bowel cancer in a similar manner to that expressed by the other non-participant groups, the NRs and NIs, i.e. feeling healthy, experiencing no bowel symptoms or no family history of bowel cancer. However, about 10% described feeling susceptible to bowel cancer, describing bowel symptoms and a family or friend with cancer or bowel cancer, in similar manner

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expressed by the attender group. These were often people who said they were unable to attend screening due to some practical or physical difficulties but still expressed a strong desire to take part in screening.

The finding that susceptibility is an important factor in the decision to participate/not participate in FS supports previous research which suggests that susceptibility is an important determinant of uptake of FOBT (Farrands et a i, 1984; Spector et a i, 1991; Weller et a i, 1995) and sigmoidoscopy (Price, 1993, Kelly & Shank, 1992, Lewis & Jensen, 1996; Wardle et a i, 2000). The presence or absence of bowel symptoms has also been reported to be associated with bowel screening participation in a number of studies (Arveux et ai,

1992, Holt et a i, 1991, Farrands et a i, 1984, Weller et a i, 1995). Wardle et a i, (2000) also reported that perceptions of susceptibility to bowel cancer were closely related to family history of bowel cancer. These findings are consistent with respondents' justifications of their perceptions of susceptibility/ insusceptibility in terms of family history of the disease. The association between perception of vulnerability to cancer and family history has also been demonstrated by Vernon et a i (1993) in relation to breast cancer. The study findings fit theoretically with the HBM which predicts that low susceptibility is associated with reduced participation and increased susceptibility with participation.

Perceived benefits of FS emerged as important in attenders' accounts of their decision to take part in screening. The main benefit described was early detection, which was mentioned by almost three quarters of the interview respondents in this group. The issue of prevention of bowel cancer was poorly grasped even among those who attended screening with only 8.8% of attenders mentioning prevention of bowel cancer as a benefit of FS. Low levels of comprehension regarding the preventative function of screening has also been reported among women attending cervical screening (Kavanagh & Broom, 1997). Other important benefits were peace of mind/reassurance and the importance of maintaining good health/ having a bowel check. This is again consistent with previous research which has reported a reliable association between perceived benefits of bowel cancer screening with screening intentions and behaviour (Farrands et ai, 1984; Hunter et a i, 1991, Myers et ai, 1990, Myers et a i, 1994, Lewis & Jensen, 1996, Wardle et a i, 2000). More specifically, research by Marteau (1993) suggests that reassurance is one of a number of non-medical benefits which may motivate attendance at screening. Other reasons such as the desire to have symptoms checked or testing for the presence of other illnesses have also been found to stimulate participation rather than the desire to prevent the target disease (Marteau, et ai,

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1994). This research also corresponds with our findings that bowel symptoms were frequently reported as a reason for interest in FS.

As expected, the benefits of FS were rarely mentioned by the non-responder and not interested groups. However, of those who did mention benefits, early detection was most commonly expressed. Again, as expected, the non-attender group described benefits of screening most frequently as compared to the other non-participant groups. A high proportion (60%) mentioned early detection as a benefit of FS, however in contrast to those who attended FS, other benefits such as peace of mind/reassurance, the value of maintaining good health/having a bowel check, were rarely mentioned. Among all non­ participant groups, the notion that FS prevented bowel cancer was rarely expressed and it was only the idea of early detection of cancer which had penetrated the views of these groups. However, as described above, this was also found to be the case among people who attended screening and has also been reported among women who attend cervical cancer screening (Kavanagh & Broom 1997).

Psychological, practical and physical barriers to FS were the main features of non­ participants’ explanations of why they declined FS screening. Barriers presented by the NR and NI groups were very similar and were given by over 90% of the interview respondents in each group. The main category for both NRs and NIs were specific concerns about the FS test which were mentioned by over 50% of the sample in each response group. The main categories under this heading were (a) fears which included fear of cancer, fear of the procedure, fear of medical tests and hospitals, and (b) negative attitudes about the test in terms of pain, discomfort and the unpleasantness of the procedure. Other important categories were embarrassment (although this was lower among the NI interview respondents) and concern about the part of the body that the test was investigating.

These findings are consistent with previous research into participation with both bowel cancer screening and cancer screening in general. Fear of cancer, the largest sub-category within fears, has been reported to be associated with low rates of participation with cervical and breast cancer screening (Alagna et a!., 1987; Gutteling eta!., 1987; Grady, etal., 1983; Hoogewerf, etal., 1990; Lantz etal., 1994; Lerman etal., 1990; Murray and McMillan, 1987; 1993). More specifically. Price (1993) and Lantz et al. (1994) have reported high levels of fear of bowel cancer as barriers to screening among the low income groups. Concerns about the pain/discomfort of the procedure, the perceived unpleasantness of the test and embarrassment have also been linked with non-participation in bowel cancer screening in a

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number of studies (Hynam et a i, 1995; Lieberman, 1998; Myers et al., 1991; Weller et a!., 1995).

Concerns about the FS test were also high among the non-attender group, however, this category was dominated by concerns about the self-administered enema which was sent to those invited for screening to take before their test. Almost 20% of the NA group reported concerns about the enema and gave this as an important reason, if not their primary reason, why they did not attend the FS test. NAs also mentioned fears although these were much less commonly expressed in comparison to the NR and NI groups. Embarrassment and concern about the part of the body were also described by around 15% of NAs.

Avoidant attitudes also featured as an important category in non-participants' accounts. Avoidant attitudes such as, ‘I don’t want to know’, were particularly high among the NI group, with almost 1/3 of interview respondents expressing such views. These attitudes were often combined with a fear of cancer and test findings. This supports the findings reported by Vernon (1997) in a review of participation with bowel cancer screening in which 'not wanting to know' was identified as a significant factor in the refusal of sigmoidoscopy and FOBT. Similarly, Macrae etal., (1984) identified 23% of responses that were concerned with ‘not seeking out trouble’. Avoidant beliefs have also been identified by E. Leventhal and Crouch (1997) in a study of middle aged and older men’s delay in obtaining medical care in response to symptoms. Men who delayed in seeking care often described their reason for delay as ‘not wanting to know bad news’, in a similar manner to interview respondents in the current study avoidant responses featured as an important reason for the delay in seeking health care. Research by van der Pligt and van der Velde (1997) examining safe sex behaviour in the context of HIV also identified avoidant style behaviours among a sample of gay men. They described the behaviour as ‘defensive avoidance’ which described individuals who denied their risk of HIV and were unwilling to take protective action.

Practical barriers to screening have emerged in a number of studies as important in the decision to decline bowel cancer screening tests (Macrae et a i, 1984, Neale, Demers & Herman, 1989, Saidi et a i, 1998, Sutton, Saidi & Bickler, 1993; Vernon et a i, 1990). In the current study, between 6% and 13% across the NR, NI and NA groups, described themselves as being ‘too busy’ to take the test which is somewhat lower than the 28% figure reported by Olynk et a i, (1996) in a telephone survey of attitudes to bowel screening in Australia. Few non-participants described travel difficulties as a barrier to screening,

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although for the NR and Ml group this was a hypothetical question, as they had not been invited to attend the FS test. Among the non-attenders who were invited, 8.8% described travel difficulties. Of far greater importance among this group were difficulties with the appointment time of the test. About a quarter of the NA group reported this was a barrier to screening describing holidays, special occasions {e.g. weddings) or simply the time of the appointment, as conflicting with the test appointment.

Physical barriers, in terms of illness, was a major barrier to participation among all the non­ participant groups (NR, NI and NA). Among the NR group about 14% of interview respondents described being ill themselves and 6% described illness in the family as an important barrier to screening. Among the NI group, 20% described current illness and 0.8% described family illness as a barrier. Among the NA group, this rose to 26% of interview respondents reporting being ill themselves and 8.8% describing illness in their family. The illnesses described by interview respondents were generally severe such as coronary heart disease, strokes and diabetes. Relatively few interview respondents described minor illnesses such as flu or colds as deterring them from the test. Previous medical tests or treatment were also an important barrier to screening, particularly among the NI group. NI respondents often described having had recent medical tests/treatment and therefore did not want to involve themselves in further medical testing saying that they felt it was too much to cope with.

Unexpectedly, normative beliefs rarely featured in the interview respondents' accounts of the decision-making process. In a few cases attenders described being recommended to go for FS by their GP or by their spouse/relative (8.8%). Some non-participants also described having heard that the test was painful or unpleasant which had influenced their decision to decline the offer of screening. However, this was a small proportion of the respondents (3- 8%) who declined FS. It may be that in the context of an interview there is considerable pressure to present the decision to accept or decline the FS test as an individual one, clearly independent from the influence of others. Or alternatively, it may be that bowel screening is viewed as somewhat 'taboo' and is not something widely discussed with others. It may also be that in the context of a new behaviour which others have little experience of, people rely less on the views of others around them to make their decision. These potential explanations need further investigation before any firm conclusions can be drawn regarding the role of normative beliefs in the decision to accept or reject FS screening.

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In general, the findings of the content analysis of reasons for participation/non participation with FS are consistent with previous research of bowel cancer screening, other cancer screening literature and preventative health research. The findings also highlight the role of some new areas such as emotional responses to cancer screening and avoidant beliefs which have received less attention in the cancer screening literature.