Patients' Knowledge of Cystic Fibrosis: Genetic Determinism and Implications for Treatment

Abstract

This paper uses the self-regulation model of illness perceptions (Leventhal et al. , 1984) to consider the implications of different ways of thinking about the causes of illness. The relationship between anxiety/depression and knowledge or denial of illness is also considered. These issues are explored using adherence to treatment in cystic fibrosis (CF) as an example. Twenty-six CF patients took part in semistructured interviews and completed a standardized anxiety and depression scale (HAD, Zigmond and Snaith, 1983). Interview data were analyzed using Interpretative Phenomenological Analysis (Chapman and Smith, 2002). HAD data were analyzed using SPSS. The respondents displayed widely differing levels of knowledge of their condition. Some deterministic comments were also reported. Findings are discussed in relation to the information that physicians might provide to patients and families in the light of increasing knowledge about genetics in society and the genotyping of individuals with genetic conditions specifically. Any important gaps in patient knowledge could usefully be discussed at transition from pediatric to adult care and issues relating to control and genetic determinism discussed with the patients individually.

Self-care and cystic fibrosis: a review of research with adults

“…1990). Chapman & Bilton (2004) presented similar findings but interpreted and analysed their results using Leventhal et al. ’s (1984, cited in Chapman & Bilton 2004) self‐regulation model, which suggests that health related behaviours (including ‘adherence’) are influenced by the cognitive schema patients have.…”

“…Chapman & Bilton (2004) presented similar findings but interpreted and analysed their results using Leventhal et al. ’s (1984, cited in Chapman & Bilton 2004) self‐regulation model, which suggests that health related behaviours (including ‘adherence’) are influenced by the cognitive schema patients have. These different illness representations are structured around five separate components: identity, time line, cause, consequences and cure/control and the authors link ‘adherence’ with (perceived) cause and controllability in particular.…”

“…2001). Convenience rather than any interest in socio‐demographic factors, therefore, seems to determine the selection of participants, as Chapman & Bilton (2004, p. 374) make clear, stating, ‘All the respondents were in regular attendance at the CF clinic, attending for annual reviews, regular checks, and when unwell’. This is, of course, problematic in any psychosocial research that requires ‘volunteers’, but when investigating issues such as ‘compliance’, there is a danger self‐selecting particular ‘types’ of respondents (i.e.…”

“…1994), leading Fong et al. (1990) to even suggest that emphasising disease severity may be a useful strategy for improving self‐care (see also Chapman & Bilton 2004). Who controls illness and its treatment also appears to be important (Abbott et al.…”

“…While these protective processes may be psychologically beneficial, however, again, they also have (unspecified) ‘adherence implications’. The self‐regulation model, Chapman & Bilton (2004) conclude, is therefore a useful model to use when talking to CF adults about their health, particularly when determining how much information should be withheld or given to whom. It is unlikely that lack of (perceived) control over the genetic causes and consequences of CF alone leads to suboptimal self‐care but lack of (perceived) control over circumstances as well.…”