1 Screening as a moral imperative The shock of a diagnosisThe psychological impact of a bowel cancer diagnosis through screening: an interpretative phenomenological analysis L.M. McGregor1, G. Black2, H. Chalkley1, C. von Wagner1 Communications Manager
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 1 Department of Epidemiology and Public Health, Health Behaviour Research Centre 2 Department of Applied Health Research BACKGROUND Bowel cancer is the second most common cause of cancer death in the UK [1] In 2006, the NHS Bowel Cancer Screening Programme (BCSP) was launched in England in an attempt to reduce bowel cancer mortality through early detection of the disease [2] The BCSP targets year old men and women registered with a GP in England Bowel cancer can be symptomless, especially in the early stages of growth, and so the need for medical attention is not often realised until the cancer has advanced The Screening Process A BSCP invitation letter is sent out around the person’s 60th birthday, and then again every two years up until the age of 74 Two weeks after the invitation, a Faecal Occult Blood test (FOBt) kit is posted to the individual’s home Six samples from 3 separate bowel motions are put on a test card and returned to a laboratory in a hygienically sealed envelope If blood is found in at least 5 samples, a colonoscopy is offered so that the reason for the bleeding can be investigated AIM RESULTS Previous research has focused on the barriers and facilitators to participation in the BCSP.[e.g. 3,4] However, if we are to encourage people to take part in screening, it is important we understand what taking part involves and the psychological impact the experience has on an individual. This study aimed to explore the lived experience of receiving a bowel cancer diagnosis through screening. Participant Gender Age Year of Diagnosis Marital status Interview method Simon M 68 2007 Married Telephone Celia F 2009 Widowed Bill 73 2000 Helen 63 2008 Face to face Pauline 71 Screening as a moral imperative The shock of a diagnosis Altered expectations …it had been something that I had taken part in because it was a scientific study. Wasn’t really me, you know. It was just my body was being used for something. (Bill) Eventually, I became a responsible grown up. […] I think that’s the whole, the whole story is the fact that, you know, it doesn’t just affect you, it affects your family as well, you know. […] I think that’s why I decided, “I’ve got to do this. Get on with it (Pauline).” So I did. (Pauline) I’m not normal as I was before, you know… […] I just live 6 months at a time. I have the scan, they tell me I’m okay so therefore I know I’ve got, I should be alive for the next 6 months, end of. (Celia) So that was a sense of loss in that I lost my life, you know, from being a professional woman at work, the school and all that, I’d lost absolutely everything in a way erm…. (Helen) I had no symptoms whatsoever, nothing at all … I just, if anybody had said to me, you know, “You…” , well they did say to me eventually, but I hadn’t got any, any symptoms at all, so you don’t, you never know, do you? That’s the thing. (Pauline) …to my horror confirmed the existence of, the exact words a probably malignant polypoidal tumour in my rectum. Erm, my world fell apart. I thought here am I fit and well, eating anything I want, erm not having any particular problems whatsoever, in my mind. (Simon) Participants: Participants had taken part in the BCSP and had received a diagnosis of bowel cancer. All participants were recruited through the charity Beating Bowel Cancer (BBC). Method: Interviews were conducted using an adapted version of Wengraf’s Biographical Narrative Interview Method (BNIM).[5] BNIM begins with a single question aimed at inducing narrative (SQUIN) i.e. METHODOLOGY Can you please tell me your story of how you came to do the bowel cancer screening test kit and how it all turned out? Tell me the events and experiences which were important for you. Begin wherever you like. Take all the time you need. I’ll listen first, I won’t interrupt. I’ll just take some notes for after you’ve finished telling me about your experience. After the participant has finished telling their story, the interviewer can ask for more details on the comments made, in the order in which they were raised. Interviews lasted between 40 and 120 minutes. Analysis: Interview transcripts were analysed using Interpretative Phenomenological Analysis (IPA).[6] CONCLUSIONS Limited homogeneity - gender, time since test completion Retrospective accounts Charity recruitment LIMITATIONS The participants interpreted the test as a scientific, medical necessity and did not reflect on their own health (unless they had symptoms) Test acted as a cue to action The shock of a diagnosis is intense, requiring tact and support The unexpected diagnosis had a fundamental effect on participants’ expectations of the future – they were uncertain, fearful of further cancer and mourning their past health This poster presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG ). The views expressed in this presentation are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. [1] Cancer Research UK (2012). Data table: cancer cases and deaths in the UK. Available from: tp://publications.cancerresearchuk.org/cancerstats/stats_mortality. [2] von Wagner, C. et al (2011). Inequalities in participation in an organized national colorectal cancer screening programme: results from the first 2.6 million invitations in England. Int J Epidemiol, 40, [3] Jones, R.M. et al (2010). Patient-Reported Barriers to Colorectal Cancer Screening: A Mixed-Methods Analysis. Am J Prev Med, 38, [4] Hewitson, P. et al (2011). Primary care endorsement and patient leaflet to improve participation in colorectal cancer screening: results of a factorial randomised trial. BJC, 105, [5] Wengraf, T. (2002). Qualitative research interviewing: biographic narrative and semi-structured methods, London, UK; SAGE publications. [6] Smith, J. et al (2009). Interpretative Phenomenological Analysis: theory, method and research. London, UK: SAGE publications. REFERENCES