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.
This is a preview of subscription content, access via your institution.
Abbott, J., Dodd, M., Bilton, D., & Webb, A. K. (1994). Treatment compliance in adults with cystic fibrosis. Thorax, 49, 115-120.
Abbott, J., Dodd, M., & Webb, A. K. (1995). Different perceptions of disease severity and self care between patients with cystic fibrosis, their close companions, and physician. Thorax, 50, 794-796.
Abbott, J., Dodd, M., & Webb, A. K. (1996). Health perceptions and treatment adherence in adults with cystic fibrosis. Thorax, 51, 1233-1238.
Abbott, J., & Gee, L. (1998). Contemporary psychosocial issues in cystic fibrosis: Treatment adherence and quality of life. Disabil Rehabil, 20, 262-271.
Almquuist, E. W., Bloch, M., Brinkman, R., Craufurd, D., & Hayden, M. R. (1999). A world-wide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalisation after pre-dictive testing for Huntington disease. Am J Hum Genet, 64, 1239-1304
Anderson, D. L., Flume, P. A., & Hardy, K. K. (2001). Psychological functioning of adults with cystic fibrosis. Chest, 119(4), 1079-1084.
Axworthy, D., Brock, D., Bobrow, M., & Marteau, T. (1996). Psychological impact of population-based carrier testing for cystic fibrosis: 3 year follow-up. Lancet, 347, 1443-1446.
Baumann, L. C. (2003). Culture and illness representation. In L. D Cameron & H. Leventhal (Eds.), The self-regulation of health and illness behaviour (pp. 242-254). London and New York: Routledge.
Biesecker-Bowles, B. (1998). Future directions in genetic counseling: Practical and ethical considerations. Kennedy Inst Ethics J, 8, 145-160.
Bluebond-Langner, M. (1996). In the shadow of Illness: Parents and siblings of the chronically ill child. Princeton, NJ: Princeton University Press.
Bogart, L. M., Catz, S. L., Kelly, J. A., & Benotsch, E. G. (2001). Factors influencing physicians' judgments of adherence and treatment decisions for patients with HIV disease. Med Decis Making, 21, 28-36.
Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: A systematic review. Eur J Hum Genet, 8, 731-738.
Chapman, E. (2002). The social and ethical implications of changing genetic technologies. J Health Psychol, 7, 195-206.
Chapman, E., & Smith, J. A. (2002). Interpretative phenomenological analysis and the new genetics. J Health Psychol, 7, 125-130.
Conway, S. P., Pond, M. N., Hamnett, T., & Watson, A. (1996). Compliance with treatment in adult patients with cystic fibrosis. Thorax, 51, 29-33.
Decruyenaere, M., Evers-Kierbooms, G., Boogaerts, A., Cassiman, J. J., Cloostermans, T., Demytte-naere, K., et al. (1996). Prediction of psychological functioning one year after the predictive test for Huntington's disease and the impact of the test result on reproductive decision making. J Med Genet, 33, 737-743.
Elborn, S. (1998). The management of young adults with cystic fibrosis: "genes, jeans and genies." Disabil Rehabil, 20, 217-225.
Goldbeck, R. (1997). Denial in physical illness. J Psychosom Res, 43, 575-593.
Hedgecoe, A. M. (2000). The popularization of genetics as geneticization. Public Underst Sci, 9(2), 183-189.
Hedgecoe, A. M. (2003). Expansion and uncertainty: Cystic fibrosis, classification and genetics. Sociol Health Illn, 25(1), 50-70.
Juengst, E. T. (1999). Genetic testing and the moral dynamics of family life. Public Underst Sci, 8, 193-205.
Koocher, G. P., McGrath, M. L., & Gudas, L. J. (1990). Typologies of non-adherence in cystic fibrosis. J Dev Behav Pediatr, 11, 353-358.
Lask, B. (1998). Compliance, adherence, concordance. Br J Psychol, 173, 271-272.
Leventhal, H., Benyamini, Y., Brownlee, S., Diefenbach, M., Patrick-Miller, L., & Robitaille, C. (1997). Illness representation: Theoretical foundations. In J. Weinman & K. Petrie (Eds.), Perceptions of health and illness (pp.19-45). London: Harwood.
Leventhal, H., Brissette, I., &Leventhal, E. (2003). The Common-Sense model of self-regulation of health and illness. In L. D. Cameron and H. Leventhal (Eds.), The self-regulation of health and illness behaviour(pp. 420-465). London and New York: Routledge.
Leventhal, H., Nerenz, D., & Steele, D. J. (1984). Illness representations and coping with health threats. In A. Baum & J. Singer (Eds.), A handbook of psychology and health(Vol. 4, pp. 219-252). Hillsdale, NJ: Erlbaum.
Lippman, A. (1991). Prenatal genetic testing and screening: Constructing needs and reinforcing in-equities. J Law Med XVII, 15-50.
Loubieres, Y., Grenet, D., Simon-Bouv, B., Medioni, J., Landais, P., Ferec, C., et al. (2002). Association between genetically determined pancreatic status and lung disease in adult cystic fibrosis patients. Chest, 121, 173-180.
Marteau, T. M., & Croyle, R. T. (1998). Psychological responses to genetic testing. Br Med J, 316, 693-696.
Marteau, T. M., & Lerman, C. (2001). Genetic risk and behavioural change. Br Med J, 322, 1056-1059.
Pickard, M., Bates, L., Dorian, M., Greig, H., & Saint, D. (2000). Alcohol and drug use in second-year medical students at the University of Leeds. Med Educ, 34, 148-150
Pinkerton, P., Trauer, T., Duncan, F., Hodson, E., & Batten, J. (1985). Cystic fibrosis in adult life-a study of coping patterns. Lancet, 2(8458), 761-763.
Richards, M., & Ponder, M. (1996). Lay understanding of genetics: Atest of a hypothesis. J Med Genet, 33, 1032-1036.
Senior, V., Marteau, T., & Peters, T. J. (1998). Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents' responses to neonatal screening for familial hypercholesterolaemia. Soc Sci Med, 48, 1857-1860.
Sensky, T. (1997). Causal attributions in physical illness. J Psychosom Res, 42, 565-573.
Shaw, C. (1999). A framework for the study of coping, illness behaviour and outcomes. J Adv Nurs, 29, 1246-1255.
Smith, J. A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain <nt>(Eds.)</nt>, Qualitative health psychology. London: Sage.
Wainwright, S. P., & Gould, D. (1997). Non-adherence with medications in organ transplant patients: A literature review. J Adv Nurs, 26, 968-977.
Zigmond, A. S., & Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatr, 67, 361-370.
About this article
Cite this article
Chapman, E., Bilton, D. Patients' Knowledge of Cystic Fibrosis: Genetic Determinism and Implications for Treatment. Journal of Genetic Counseling 13, 369–385 (2004). https://doi.org/10.1023/B:JOGC.0000044199.38694.6c
- cystic fibrosis
- psychological health
- genetic determinism
- illness perceptions
- genetic counseling