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An exploration of the factors involved in lifestyle decisions in young people with cystic fibrosis using decision making vignettes, and the role of perceived risk in infection

By Lisa Marie Brash

Abstract

This study explored the factors involved in lifestyle decision making in young people with Cystic Fibrosis, specifically the role of infection risk. Certain pathogens present a high risk of infection to people with Cystic\ud Fibrosis, and can significantly affect their health. It is therefore important that people with the disease attempt to minimise the risk of contracting these infections. There was limited literature relating specifically to infection risk and decision making in this population. However, this study drew on decision making literature from other areas, with regard to engaging in risktaking behaviours. The study employed a vignette methodology, presenting a series of lifestyle situations to eight participants and asking them to think aloud whilst deciding whether to engage in the activity. This was followed by a brief interview. An interview was also conducted with a Consultant Microbiologist, offering a detailed understanding of the level of risk presented in each vignette. Thematic Analysis was used to interpret the results, highlighting a number of important themes. Participants frequently chose to\ud engage in activities that would present an increased risk of infection. It was often important to find a balance between maintaining their health and engaging in a fulfilling life. However, at times, participants lacked an\ud adequate understanding of the level of risk or the nature of the infections to make an informed decision. Implications for future research and clinical practice are discussed

Publisher: Academic Unit of Psychiatry and Behavioural Sciences (Leeds)
Year: 2010
OAI identifier: oai:etheses.whiterose.ac.uk:1126

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  1. (2000). A clinical profile to predict decision making, risk behaviours, clinical status, and health related quality of life for cancer surviving adolescents.
  2. (2005). A cognitive and behavioural hierarchical decision making model of college students' alcohol consumption.
  3. (2008). A dual process approach to health risk decision making: The prototype willingness model.
  4. (1998). Addressing loss of control in chronic illness: Theory and practice.
  5. (1985). Ambiguity and uncertainty in probabilistic inference.
  6. (2008). Assessing adolescent decision making competence.
  7. (2006). Assessment of agreement between parents and children on health related quality of life in children with cystic fibrosis. Child Care, Health,
  8. (2005). Associations between clinical variables and quality of life in adults with cystic fibrosis.
  9. (1998). Basics of Qualitative Research.
  10. (2003). Brief report: Parental perceptions of child vulnerability in children with chronic illness.
  11. (2009). Can health related quality of life predict survival in adults with cystic fibrosis?
  12. (2003). CFQ – Cystic Fibrosis Questionnaire Revised, User Manual, English Version. Available from the author:
  13. (2008). Compliance in cystic fibrosis: An examination of Infection Control Guidelines.
  14. (2006). Correlates of unprotected sex among adult heterosexual men living with HIV.
  15. (2008). Current theories of risk and rational decision making.
  16. (2007). Cystic fibrosis mortality and survival in the UK:
  17. (2004). Cystic fibrosis patients and families support cross infection measures.
  18. (2009). Cystic Fibrosis.
  19. (1993). Decision making orientation and AIDS related knowledge, attitudes, and behaviours of Hispanic, African American, and white adolescents.
  20. (2010). Developmental patterns in decision making autonomy across middle childhood and adolescence: European American parents' perspectives.
  21. (1995). Different perceptions of disease severity and self care between patients with cystic fibrosis, their close companions, and physician.
  22. (2004). Discrete choice experiments in health care. NICE should consider using them for patient centred evaluations of technologies.
  23. (1995). Effects of Pseudomonas aeruginosa colonisation on lung function and anthropomorphic variables in children with cystic fibrosis.
  24. (2007). environment as a source of Pseudomonas Aeruginosa and other pathogens. Retrieved from http://www.cftrust.org.uk/aboutcf/publications/Pseudomonas_article_
  25. (2001). Facilitating decision making in young people.
  26. (2003). Growing up and living with Cystic Fibrosis. Everyday life and encounters with health care and social services – A qualitative study.
  27. (1996). Health independence and developmental tasks of adulthood in cystic fibrosis.
  28. (1996). Health perceptions and treatment adherence in adults with cystic fibrosis.
  29. (2008). HIV prevention: What have we learned from community experiences in concentrated epidemics?
  30. (1997). How do Americans want to die? A Factorial vignette survey of public attitudes about end of life medical decision making?
  31. (1996). Improved survival in the Danish centre treated cystic fibrosis patient: Results of aggressive treatment.
  32. (1998). Maintenance of safe sex behavior by HIV serodiscordant heterosexual couples.
  33. (2008). Methicillin Resistant Staphylococcus aureus (MRSA). Retrieved from http://www.cftrust.org.uk/aboutcf/publications/consensusdoc/ MRSA_1st_Edition_Final_web.pdf
  34. (1989). Methods of analysing physician practice patterns in hypertension.
  35. (1992). Optimism, coping, psychological distress, and high risk sexual behaviour among men at risk for Acquired Immunodeficiency Syndrome (AIDS).
  36. (1997). Patient, physician and presentational influences on clinical decision making for breast cancer: Results from a factorial experiment.
  37. (1991). Perceptions of medical compliance in children and adolescents with Cystic Fibrosis.
  38. (1996). Protocol analysis: theoretical background.
  39. (1996). Qualitative inquiry: perspectives, methods and psychology. In
  40. (2005). Quality of life in chronic illness: Perceptions of parents and paediatricians.
  41. (1998). Quality of life in patients with cystic fibrosis and their parents: What is important besides disease severity?
  42. (2009). Research Ethics Committee Room 5.2,
  43. (2009). Respiratory microbiology of patients with Cystic Fibrosis in the United States,
  44. (2005). Risk factors for acquisition of Methicillin resistant Staphylococcus aureus (MRSA) by patients with Cystic Fibrosis.
  45. (1993). Risk taking and decision making of adolescent long term survivors of cancer.
  46. (1961). Risk, ambiguity, and the Savage axioms.
  47. (2005). Self comparison processes, prototypes, and smoking onset among early adolescents.
  48. (2005). Sensation seeking and HIV serodiscordant couples.
  49. (1999). Shaping health psychology: Qualitative research, evaluation, and representation.
  50. (1993). Social anxiety scale for children revised: Factor structure and concurrent validity.
  51. (2008). Suggestions for prevention and infection control. Retrieved from http://www.cftrust.org.uk/aboutcf/publications/consensusdoc/C_ Pseudomonas_aeruginosa_Nov_04.pdf The UK Cystic Fibrosis Trust Infection Control Working Group
  52. (1996). The child vulnerability Scale: An instrument to measure parental perceptions of child vulnerability.
  53. (1999). The relationship between control beliefs and self reported adherence in adults with cystic fibrosis.
  54. (2006). The role of personality and career decision making self efficacy in the career choice commitments of college students.
  55. (2004). The UK Cystic Fibrosis Trust Infection Control Working Group
  56. (2008). Unrealistic fatalism in US. Youth ages 14 22: Prevalence and characteristics.
  57. (2006). Using thematic analysis in psychology.
  58. (2004). Validity of conjoint analysis to study clinical decision making in elderly patients with aortic stenosis.
  59. (2008). Vignette studies of medical choice and judgment to study caregivers' medical decision behaviour: Systematic review.
  60. (2001). Ways of coping with cystic fibrosis: Implications for treatment adherence. Disability and rehabilitation,
  61. (2008). What is cystic fibrosis?
  62. (1997). What predicts gastroenterologists' and surgeons' diagnosis and management of common bile duct stones?

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