REVIEW counsellors to increase their understanding of the psychological impact of the information they provide on their patients’ behaviour in relation to health. METHOD Design This is a cross-sectional interview study. Sample The recruitment of FH patients for DNA testing was ongoing as part of a three year DH-funded research arm of the UK FH Cascade Audit Project at the Royal Free Hospital. There were a total number of seven participants, who were FH patients that had received a positive DNA test result, (identification of a genetic mutation), to confirm the clinical diagnosis of the condition. The criteria for FH diagnosis are predefined (Betteridge et al., 1999), as are the methods for mutation detection (Heath et al., 2001). Participants are referred to by a number (e.g. III) to preserve anonymity. Procedure Approval from the NHS ethics committee was granted for this research project. Informed consent was obtained for samples to be taken from patients and sent to the DNA diagnostic laboratory at Great Ormond Street Hospital for analysis. A target of three months was set for returning the final test results of participants, on receipt of which, patients were invited to the Royal Free Clinic to be given their results by a clinician and arrange follow-up for family members. Consent was also obtained for the results consultation to be tape-recorded. During this meeting, patients were given a verbal introduction to the study by the Genetics Nurse, a further information sheet to read and an informed consent sheet to sign and return if they wished to participate. Those that agreed to take part in the study were contacted to arrange an interview approximately one month after receiving the test result, which were completed either in the patient’s home or in a special clinic visit, as preferred by participants. Qualitative, indepth interviews were conducted by the researcher of this project to gain an understanding of two general issues: communication of genetic information within a family and the impact of this information on the thinking and behaviour of individuals. The interviews were semi-structured and started with a schedule but important topics were probed as they arose. Both the interview and consultation for each of the seven participants were tape recorded, transcribed and anonymised, generating fourteen transcripts for analysis. Analysis The interview and consultation transcripts for each of the seven FH patients were read and re-read individually by the author to identify and extract quotations relating to: 1. 2. 3.
The way clinicians presented the issue of behaviour change. The attitudes expressed by patients towards behaviour change. Responses given by patients regarding their motivation to make behaviour changes.
This process entailed considering both lifestyle behaviour changes (e.g. diet, physical activity, smoking and cholesterol checks) and
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medication use but as two separate categories. A word search was then carried out for each transcript using the Microsoft Word package to ensure that all relevant quotations had been gathered. Words that were used included: pills, tablets, medicine, medication, statins, drugs, prescription, treatment, diet, fat, oil, sugar, alcohol, food, weight, healthy, habit, intake, drink, eat, physical, activity, exercise, gym, sport, walk, fit, active, smoke, cigarettes, check, test, level, precautions and cautious. One consultation and one interview transcript containing a high frequency of quotations, as deemed by the author, were emailed to the researcher involved in the project to read, and similarly extract relevant passages of the transcripts. A comparison was then made to check whether the researcher and author had identified the same quotations. Qualitative thematic analysis (Joffe and Yardley, 2004) was carried out for each participant individually, using the quotations separated from both consultation and interview transcripts. Emergent themes for each patient, together with the illustrative quotations, were emailed to the principal investigator of the project to be checked and refined. These themes were then compared across all participants and used to devise a coding frame to identify and categorize the parts of the transcripts that addressed the specific research questions of this study. The frequencies of illustrative quotations for each theme were recorded, with totals, averages and ranges subsequently being calculated to give a quantitative content analysis. In addition, the number of lines of interview and consultation transcripts and, therefore, percentage of total transcript that referred to behaviour was worked out for both patients and clinicians. All figures were calculated to one decimal place. By convention, all elisions in the text will be indicated by three dots, with square brackets used for insertions or clarifications made by the author. (Green and Thorogood, 2004, pg. 101). All quotations are labelled as follows: (VII, C/I, pg 3, 115-117). This information translates to the participant number, source of the quotation; where ‘C’ represents the consultation transcript and ‘I’ the interview transcript, page number and line numbers. ‘C’, ‘P’ and ‘I’ are the abbreviations used to indicate whether the quotations belong to the clinician, participant or interviewer respectively. Results References to four different behaviours were made across interviews conducted with the seven participants: diet, physical activity, monitoring cholesterol levels via regular tests or appointments and medication. Additionally, participants I and III mentioned that they had given up smoking during consultations with the clinician but not when interviewed: And then I stopped smoking (III, C, pg 2, 70) In the past I was, I have been, I have, I smoked for, and I have given it up from 18 years. In 1989, I think, as far as I remember, I gave it up. I was smoking earlier. (I, C, pg 8, 339-241) The range of references made to behaviour over individuals was ten, and for across all four behaviours was sixteen. Table 2 indicates that references were made to medication and diet by
lsjm 30 april 2010 volume 01