Making sense of being at 'high risk' of coronary heart disease within primary prevention

types: Journal ArticleCurrent National Health Service policy advocates screening to identify individuals at 'high risk' of cardio-vascular disease (CHD) in primary care. This article utilizes the work of Radley to explore how 'high risk' of CHD patients make sense of their new risk status. Results are presented here from a nested qualitative study within a quantitative randomized trial of a CHD risk intervention in primary care. 'Discovery' interviews were conducted with 'high risk' participants (n = 38, mean age = 55) two weeks after intervention and thematically analysed. In response to perceived threat, many participants sought to both 'minimize' and 'normalize' their risk status. They also reported intentions to act, particularly concerning dietary change and exercise, although less so for smoking amongst the lower socio-economic status participants. Such perceptions and intentions were contextualized within the life-course of later middle-age, so that both being at risk, and being treated for risk, were normalized as part of growing older. Social position, such as gender and SES, was also implicated. CHD risk interventions should be context-sensitive to the life-course and social position of those who find themselves at 'high risk' of CHD in later middle-age

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered "exceptional" and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or "in depth" knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support.Genetic testing Genetic risk Thrombophilia Deep vein thrombosis Patient perceptions UK

Meanings of sitting in the context of chronic disease: a critical reflection on sedentary behaviour, health, choice and enjoyment

Reducing sedentary behaviour or sitting is a new public health focus. Emerging research has, however, found that sedentary activities may be associated with health and mental health benefits for older adults. This article reports findings of the qualitative arm of a feasibility trial to reduce sedentary behaviour among patients with Chronic Obstructive Pulmonary Disease (COPD). From interviews (n = 21) conducted prior to the intervention we identified three themes: (i) participants sat to enable them to perform activities, such as housework, (ii) sitting, such as watching TV or fishing, was experienced as enjoyable and (iii) the most ill participants experienced sitting in terms of sadness, as the only thing they could do. Our observations draw attention to three issues. First, our participants did not always sit out of choice, they had to rest between activities and sat due to breathlessness and mournfulness. Second, the intrinsic value of enjoyment associated with sedentary activities comes into sharp relief in the context of progressive chronic disease, which makes it increasingly difficult to enjoy any activity or life. Third, trials, predicated on trying out a pre-defined solution, are particularly challenging for mixed methods qualitative research seeking to trouble categories, such as choice, health and enjoyment. In conclusion, we concur with research that has highlighted that sedentary activities may also have benefits; however, we would make a stronger case for appreciating alternative values, such as enjoyment of life, rather than just health, when appropriate, in research and in practice

The mundane experience of everyday calorie trackers: Beyond the metaphor of Quantified Self

This paper was accepted for publication in the journal New Media and Society and the definitive published version is available at https://doi.org/10.1177/1461444817698478In this article, we build on the work of Ruckenstein and Pantzar (2015), who have demonstrated how our understanding of self-tracking has been influenced by the metaphor of the Quantified Self (QS). To complicate this very selective picture of self-tracking, we shift the focus in understanding self-tracking from members of the QS community to the experiences of ‘ordinary man and woman’ (Bakardjieva and Smith, 2001). We, therefore, interviewed ‘everyday calorie trackers’, people who had themselves started using MyFitnessPal calorie counting app but were not part of any tracking community. Our analysis identifies three main themes – goals, use and effect – which highlight the mundane side of self-tracking, where people pursuing everyday, limited goals engage in basic self-tracking and achieve temporary changes. These experiences contrast with the account of self-tracking in terms of long-term, experimental analysis of data on the self or ‘biohacking,’ which dominates the QS metaphor in the academic literature

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia.

Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered "exceptional" and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or "in depth" knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support.RD&E staff can access the full-text of this article via OpenAthens. Click on the 'Additional Link' above to access the full-text and log in with NHS OpenAthens if prompted

Patients' understanding of genetic susceptibility testing in mainstream medicine: qualitative study on thrombophilia.

UK and US policy initiatives have suggested that, in the future, patients and clinicians in mainstream medicine could use genetic information to prevent common illnesses. There are no studies on patients' experience and understanding of the process of testing for common genetic susceptibilities in mainstream medicine.This article is freely available via Open Access. Click on the ‘Additional Link’ above to access the full-text from the publisher’s site.PDA/02/06/098/Department of Health/United Kingdo

Realising the potential of the family history in risk assessment and primary prevention of coronary heart disease in primary care: ADDFAM study protocol

Background: Coronary heart disease (CHD) is the leading cause of death in the developed world, and its prevention a core activity in current UK general practice. Currently, family history is not systematically integrated into cardiovascular risk assessment in the UK, Europe or the US. Further, primary health care professionals' lack the confidence to interpret family history information and there is a low level of recording of family history information in General Practice (GP) records. Primary prevention of CHD through lifestyle advice has sometimes yielded modest results although, for example, behavioural interventions targeted at "at risk" patients have produced encouraging findings. A family history approach, targeted at those requesting CHD assessment, could motivate lifestyle change. The project will assess the clinical value of incorporating systematic family history information into CHD risk assessment in primary care, from the perspective of the users of this service, the health care practitioners providing this service, and the National Health Service. Methods/Design: The study will include three distinct phases: (1) cross-sectional survey to ascertain baseline information on current recording of family information; (2) through an exploratory matched-pair cluster randomised study, with nested qualitative semi-structured interview and focus group study, to assess the impact of systematic family history recording on participants' and primary care professionals' experience; (3) develop an economic model of the costs and benefits of incorporating family history into CHD risk assessment. Discussion: On completion of the project, users and primary care practitioners will be more informed of the value and utility of including family history in CHD risk assessment. Further, this approach will also act as a model of how familial risk information can be integrated within mainstream primary care preventive services for common chronic diseases

Negotiating the boundary between medicine and consumer culture: Online marketing of nutrigenetic tests☆

Genomics researchers and policy makers have accused nutrigenetic testing companies—which provide DNA-based nutritional advice online—of misleading the public. The UK and USA regulation of the tests has hinged on whether they are classed as “medical” devices, and alternative regulatory categories for “lifestyle” and less-serious genetic tests have been proposed. This article presents the findings of a qualitative thematic analysis of the webpages of nine nutrigenetic testing companies. We argue that the companies, mirroring and negotiating the regulatory debates, were creating a new social space for products between medicine and consumer culture. This space was articulated through three themes: (i) how “genes” and tests were framed, (ii) how the individual was imagined vis a vis health information, and (iii) the advice and treatments offered. The themes mapped onto four frames or models for genetic testing: (i) clinical genetics, (ii) medicine, (iii) intermediate, and (iv) lifestyle. We suggest that the genomics researchers and policy makers appeared to perform what Gieryn (Gieryn, T.F. (1983). Boundary-work and the demarcation of science from non-science: strains and interests in professional ideologies of scientists. American Sociological Review, 48, 781–795.) has termed “boundary work”, i.e., to delegitimize the tests as outside proper medicine and science. Yet, they legitimated them, though in a different way, by defining them as lifestyle, and we contend that the transformation of the boundaries of science into a creation of such hybrid or compromise categories is symptomatic of current historical times. Social scientists studying medicine have referred to the emergence of “lifestyle” products. This article contributes to this literature by examining the historical, regulatory and marketing processes through which certain goods and services become defined this way