Cystic fibrosis adults' perception and management of the risk of infection with Burkholderia cepacia complex

References

• Armstrong , D. 1998 . Decline of the hospital: Reconstructing institutional dangers . Sociology of Health and Illness , 20 : 445 – 457 .
   Web of Science ®Google Scholar
• Bellaby , P. 1990 . To risk or not to risk? Uses and limitations of Mary Douglas on risk-acceptability for understanding health and safety at work and road accidents . The Sociological Review , 38 : 465 – 483 .
   Web of Science ®Google Scholar
• Bellaby , P. and Lawrenson , D. 2002 . Approaches to the risk of riding motorcycles: Reflections on the problem of reconciling statistical risk assessment and motorcyclists' own reasons for riding . The Sociological Review , 49 : 368 – 388 .
   Web of Science ®Google Scholar
• Bloor , M. 1995 . “ A user's guide to contrasting theories of HIV-related risk behaviour ” . In Medicine, Health and Risk: Sociological Approaches , Edited by: Gabe , J. Oxford : Blackwell .
   Google Scholar
• Bramwell , E. C. , Halpin , D. M. G. , Duncan-Skingle , F. , Hodson , M. E. and Geddes , D. M. 1995 . Home treatment of patients with cystic fibrosis using the ‘Intermate’: The first year's experience . Journal of Advanced Nursing , 22 : 1063 – 1067 .
   PubMed Web of Science ®Google Scholar
• Cystic Fibrosis Foundation . Policy on conference attendance by individuals with cystic fibrosis . The seventeenth annual cystic fibrosis conference preliminary program . October 16 – 19 . Accessed 15.01.2004, available at: http://www.nacfconference.org/nacfcprogram.pdf
   Google Scholar
• Cystic Fibrosis Trust, British Paediatric Association, British Thoracic Society . 1996 . Clinical guidelines for cystic fibrosis care . Journal of the Royal College of Physicians of London , 30 : 305 – 308 .
   PubMedGoogle Scholar
• Dey , I. 1993 . Qualitative Data Analysis: A User-friendly Guide for Social Scientists , London : Routledge .
   Google Scholar
• Dodge , J. A. and Morrison , G. 1992 . Diabetes mellitus in cystic fibrosis: A review . Journal of the Royal Society of Medicine , 85 ( Suppl 19 ) : 25 – 28 .
   PubMedGoogle Scholar
• Dodge , J. A. , Morison , S. , Lewis , P. A. , Coles , E. C. , Geddes , D. Russell , G. 1997 . Incidence, population, and survival of cystic fibrosis in the UK, 1968 – 95 . Archives of Disease in Childhood , 77 : 493 – 496 .
   PubMed Web of Science ®Google Scholar
• Douglas , M. 1966 . Purity and Danger , London : Routledge and Kegan Paul .
   Google Scholar
• Douglas , M. 1982 . Essays in the Sociology of Perception , London : Routledge .
   Google Scholar
• Douglas , M. 1992 . Risk and Blame: Essays in Cultural Theory , London : Routledge .
   Google Scholar
• Douglas , M. and Calvez , M. 1990 . The self as a risk taker: A cultural theory of contagion in relation to AIDS . The Sociological Review , 38 : 445 – 464 .
   Web of Science ®Google Scholar
• Douglas , M. and Wildalvsky , A. 1982 . Risk and Culture: An Essay on the Selection of Technological and Environmental Dangers , Berkeley : University of California Press .
   Google Scholar
• Dy , M. E. , Nord , J. A. and LaBombardi , V. J. 1999 . Lack of throat colonization with Burkholderia cepaci among cystic fibrosis healthcare workers . Infection Control and Hospital Epidemiology , February : 90
   PubMed Web of Science ®Google Scholar
• Elborn , J. S. , Shale , D. J. and Britton , J. R. 1991 . Cystic fibrosis: Current survival and population estimates to the year 2000 . Thorax , 46 : 881 – 885 .
   PubMed Web of Science ®Google Scholar
• Førde , O. H. 1998 . Is imposing risk awareness cultural imperialism? . Social Science and Medicine , 47 : 1155 – 1159 .
   PubMed Web of Science ®Google Scholar
• Gabe , J. 1995 . “ Health, medicine and risk: The need for a sociological approach ” . In Medicine, Health and Risk: Sociological Approaches , Edited by: Gabe , J. Oxford : Blackwell .
   Google Scholar
• Giddens , A. 1991 . Modernity and Self-Identity. Self and Society in the Late Modern Age , Cambridge : Polity Press .
   Google Scholar
• Glick-Schiller , N. , Crystal , S. and Lewellen , D. 1994 . Risky business: The cultural construction of AIDS risk groups . Social Science and Medicine , 38 : 1337 – 1346 .
   PubMed Web of Science ®Google Scholar
• Govan , J. R. W. , Doherty , C. J. , Nelson , J. W. , Brown , P. H. , Greening , A. P. Maddison , J. 1993 . Evidence for transmission of Pseudomonas by social contact in cystic fibrosis . Lancet , 342 : 15 – 19 .
   PubMed Web of Science ®Google Scholar
• Grinyer , A. 1995 . “ Risk, the real world and naïve sociology ” . In Medicine, Health and Risk: Sociological Approaches , Edited by: Gabe , J. Oxford : Blackwell .
   Google Scholar
• Hammond , K. B. , Abman , S. H. , Sokol , R. J. and Accurso , F. J. 1991 . Efficacy of statewide neonatal screening for cystic fibrosis by assay of trypsinogen concentrations . New England Journal of Medicine , 325 ( 11 ) : 769 – 774 .
   PubMed Web of Science ®Google Scholar
• Hart , G. , Boulton , M. , Fitzpatrick , R. , McLean , J. and Dawson , J. 1992 . ‘Relapse’ to unsafe sexual behaviour among gay men: A critique of recent behavioural HIV/AIDS research . Sociology of Health and Illness , 14 ( 2 ) : 216 – 232 .
   Web of Science ®Google Scholar
• Holmes , A. , Govan , J. and Goldstein , R. 1998 . Agricultural use of Burkholderia (Pseudomonas) cepacia: A threat to human health? . Emerging Infectious Diseases , 4 : 221 – 227 .
   PubMed Web of Science ®Google Scholar
• Isles , A. , Maclusky , I. , Corey , M. , Gold , R. , Prober , C. Fleming , P. 1984 . Pseudomonas cepacia infection in cystic fibrosis: An emerging problem . Journal of Paediatrics , 104 : 206 – 210 .
   PubMed Web of Science ®Google Scholar
• Kanj , S. S. , Tapson , V. , Davis , R. D. , Madden , J. and Browning , I. 1997 . Infections in patients with cystic fibrosis following lung transplantation . Chest , 112 : 924 – 930 .
   PubMed Web of Science ®Google Scholar
• Kenen , R. H. 1996 . The at-risk health status and technology: A diagnostic invitation and the ‘gift’ of knowing . Social Science and Medicine , 42 : 1545 – 1553 .
   PubMed Web of Science ®Google Scholar
• Khan , S. U. , Arroliga , A. C. and Gordon , S. M. 1998 . Significance of airway colonization by Burkholderia gladioli in lung transplant candidates . Chest , 114 : 658
   PubMed Web of Science ®Google Scholar
• Krimsky , S. 1992 . “ The role of theory in risk studies ” . In Social Theories of Risk , Edited by: Krimsky , S. and Golding , D. Westport, CT : Praeger .
   Google Scholar
• Ledson , M. J. , Gallagher , M. J. , Corkhill , J. E. , Hart , C. A. and Walshaw , M. J. 1998 . Cross infection between cystic fibrosis patients colonised with Burkholderia cepacia . Thorax , 53 : 432 – 436 .
   PubMed Web of Science ®Google Scholar
• LiPuma , J. J. 2001 . Burkholderia cepacia complex: A contraindication to lung transplantation in cystic fibrosis? . Transplant Infectious Disease , 3 : 149 – 160 .
   PubMedGoogle Scholar
• Lowton , K. and Gabe , J. 2003 . Life on a slippery slope: Perceptions of health in adults with cystic fibrosis . Sociology of Health and Illness , 25 : 289 – 319 .
   PubMed Web of Science ®Google Scholar
• Lupton , D. 1995 . The Imperative of Health: Public Health and the Regulated Body , London : Sage .
   Google Scholar
• Mahadeva , R. , Webb , K. , Westerbeek , R. C. , Carroll , N. R. , Dodd , M. E. Bilton , D. 1998 . Clinical outcome in relation to care in centres specializing in cystic fibrosis: Cross sectional study . British Medical Journal , 316 : 1771 – 1775 .
   PubMed Web of Science ®Google Scholar
• Marris , C. , Langford , I. and O'Riordan , T. 1998 . A comparison and integration of the psychometric and cultural theory approaches to risk perceptions . Risk Analysis , 18 : 635 – 647 .
   PubMed Web of Science ®Google Scholar
• Michael , M. 1996 . “ Ignoring science: Discourses of ignorance in the public understanding of science ” . In Misunderstanding Science? The Public Reconstruction of Science and Technology , Edited by: Irwin , A. and Wynne , B. Cambridge : Cambridge University Press .
   Google Scholar
• Millar-Jones , L. , Ryley , H. C. , Paull , A. and Goodchild , M. C. 1998 . Transmission and prevalence of Burkholderia cepacia in Welsh cystic fibrosis patients . Respiratory Medicine , 92 : 178 – 183 .
   PubMed Web of Science ®Google Scholar
• Ostrander , D. 1982 . “ One- and two-dimensional models of the distribution of beliefs ” . In Essays in the Sociology of Perception , Edited by: Douglas , M. London : Routledge .
   Google Scholar
• Rommens , J. M. , Iannuzzi , M. C. , Kerem , B. , Drumm , M. L. , Melmer , G. Dean , M. 1989 . Identification of the cystic fibrosis gene: Chromosome walking and jumping . Science , 245 : 1059 – 1065 .
   PubMed Web of Science ®Google Scholar
• Sawyer , S. M. 1996 . Reproductive and sexual health in adolescents with cystic fibrosis . British Medical Journal , 313 : 1095 – 1096 .
   PubMed Web of Science ®Google Scholar
• Shepperd , S. , Harwood , D. and Gray , A. 1998a . Randomised controlled trial comparing hospital at home care with inpatient hospital care. 2: cost minimization analysis . British Medical Journal , 316 : 1791 – 1796 .
   PubMed Web of Science ®Google Scholar
• Shepperd , S. , Harwood , D. , Jenkinson , C. , Gray , A. , Vessey , M. and Morgan , P. 1998b . Randomised controlled trial comparing hospital at home care with inpatient hospital care. 1: three month follow up of health outcomes . British Medical Journal , 316 : 1786 – 1791 .
   PubMed Web of Science ®Google Scholar
• Solberg , C. O. 2000 . Spread of Staphylococcus aureus in hospitals: Causes and prevention . Scandinavian Journal of Infectious Diseases , 32 : 587 – 595 .
   PubMed Web of Science ®Google Scholar
• Strauss , A. 1987 . Qualitative Analysis for Social Scientists , Cambridge : Cambridge University Press .
   Google Scholar
• Tablan , O. , Chorba , T. , Schidlow , D. V. , White , J. W. , Hardy , K. A. Gilligan , P. H. 1985 . Pseudomonas cepacia colonisation in patients with cystic fibrosis: Risk factors and clinical outcome . Journal of Pediatrics , 107 : 382 – 387 .
   PubMed Web of Science ®Google Scholar
• Tansey , J. and O'Riordan , T. 1999 . Cultural theory and risk: A review . Health, Risk & Society , 1 : 71 – 90 .
   Google Scholar
• Taylor , R. F. , Gaya , H. and Hodson , M. E. 1993 . Pseudomonas cepacia: Pulmonary infection in patients with cystic fibrosis . Respiratory Medicine , 87 : 187 – 192 .
   PubMed Web of Science ®Google Scholar
• Webb , A. K. and Egan , J. 1997 . Should patients infected with Burkholderia cepacia undergo lung transplantation . Thorax , 52 : 671 – 673 .
   PubMed Web of Science ®Google Scholar
• Webb , A. K. and Govan , J. R. 1998 . Burkholderia cepacia: Another twist and a further threat . Thorax , 53 : 333 – 334 .
   PubMed Web of Science ®Google Scholar
• Wight , D. 1999 . Cultural factors in young heterosexual men's perception of HIV risk . Sociology of Health and Illness , 21 : 735 – 758 .
   Web of Science ®Google Scholar
• Wildavsky , A. and Dake , K. 1990 . Theories of risk perception: Who fears what and why? . Daedalus , Fall : 41 – 60 .
   Web of Science ®Google Scholar
• Williams , G. , Popay , J. and Bissell , P. 1995 . “ Public health risks in the material world: Barriers to social movements in health ” . In Medicine, Health and Risk: Sociological Approaches , Edited by: Gabe , J. Oxford : Blackwell .
   Google Scholar