Participation in bowel cancer screening: an exploration of the processes involved

Abstract

BackgroundBowel cancer is the third most common cancer and the second major cause of cancer deaths in the UK. Research suggests that the risk of death from bowel cancer can be reduced by 16% through regular screening. An initial scientific literature review shows little research in this area. Previous studies identify non-attendance and low uptake as a major challenge and suggest that these factors could be affected by literacy level, fear, and anxiety. However, many of these studies were undertaken in other locations and countries, limiting replication or generalisation in the UK. There is therefore a need for qualitative investigation into the reasons and motives for low uptake. We explored reasons for participation and non-participation in the NHS bowel cancer screening programme, which requires participants to undertake a faecal occult blood test. We aimed to develop an understanding of behaviour regarding bowel cancer and the screening process; explore how people make sense of information gathered and how this influences their decisions; and describe similarities and differences regarding different groups' perceptions of bowel cancer screening. MethodsQualitative research methods are used to unpick participants' sense-making processes. A grounded theory approach has allowed the development and understanding of how participants form meanings and make decisions dependent on factors such as culture and sex. 26 participants were recruited through the bowel cancer screening hub in accordance with ethics approval. Participants were those who completed the faecal occult blood test (with negative result) and those who declined during the first round of the programme. Data were obtained with semistructured, face-to-face interviews and were analysed with grounded theory techniques. Analysis was done by organisation of data into codes, themes, and categories by Nvivo and Mind Genius software. Interviewer bias was minimised by use of credibility strategies such as member checking, reflexivity, and peer review. FindingsData analysis showed participants' low awareness of the faecal occult blood test before they received the invitation for screening. Awareness of bowel cancer was mainly through past experience or family history or was work-related. Data suggested that demography and cultural issues such as age, sex, taboo, attitudes, altruism, so-called ostrich syndrome, and stoicism can affect behaviour and decisions. Knowledge and awareness were identified as factors in breaking some of the cultural barriers affecting uptake. Main reasons for uptake were health protection or peace of mind. All participants viewed screening positively and will continue with screening. Men seemed very keen to participate in screening and seemed as mindful of their health as were women. Possible reasons to decline the invitation included “if I don't know it won't happen to me”, “taboo subject”, “method of stool sample collection”, “fear”, and “messy and not pleasant”. Limitations of our study included the small number of people who declined screening: only two declined in the first round, but have completed subsequent screening. Several practical issues have been identified that will inform service provision—eg, improvement of the invitation letter and information about sample collection. InterpretationWe expect the output of this research to inform future practice and policy implementation towards increased awareness, improved perception and uptake of screening, and service improvement that could lead to a substantial reduction in bowel cancer deaths. The findings will also be drawn on to explore the role of social marketing in improving perception and uptake of the bowel cancer screening programme. FundingNorthumbria University at Newcastle upon Tyne in conjunction with North East, Yorkshire and Humber Quality Assurance Reference Centre for Cancer Screening (NEYHQARC).