When the cystic fibrosis label does not fit: A modified uncertainty theory

Qualitative Health Research

Volumn 20, Issue 2, 2010, Pages 209-223

  Tluczek, Audrey ^a   McKechnie, Anne Chevalier ^a   Lynam, Patrice A ^a  

^a UNIVERSITY OF WISCONSIN MADISON   (United States)

Author keywords

Cystic fibrosis; Dimensional analysis; Genetics; Psychosocial issues; Suffering; Uncertainty

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; ARTICLE; ATTITUDE TO HEALTH; CYSTIC FIBROSIS; FEMALE; HUMAN; MALE; MIDDLE AGED; NEWBORN; NEWBORN SCREENING; PARENT; PSYCHOLOGICAL ASPECT; UNCERTAINTY;

ADAPTATION, PSYCHOLOGICAL; ADULT; ATTITUDE TO HEALTH; CYSTIC FIBROSIS; FEMALE; HUMANS; INFANT, NEWBORN; MALE; MIDDLE AGED; NEONATAL SCREENING; PARENTS; UNCERTAINTY; YOUNG ADULT;

EID: 77952467736     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732309356285     Document Type: Article

References (41)

1. Accurso, F. J. (2008). Update in cystic fibrosis 2007. American Journal of Respiratory and Critical Care Medicine, 177(10), 1058-1061.
2. Bowers, B., & Schatzman, L. (2009). Dimensional analysis. In J. M. Morse, P. N. Stern, J. M. Corbin, B. Bowers, K. C. Charmaz, & A. E. Clarke (Eds.), Developing grounded theory: The second generation (pp. 86-106). Walnut Creek, CA: Left Coast Press.
3. Centers for Disease Control and Prevention. (2008). Prevalence of self-reported postpartum depression symptoms - 17 states, 2004-2005. Morbidity & Mortality Weekly Report, 57(14), 361-366. Retrieved August 12, 2009, from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5714a1.htm
4. Corbin, J., & Strauss, A. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: Sage.
5. Cystic Fibrosis Foundation. (2008). CFF patient registry: Annual data report 2006. Retrieved August 12, 2009, from http://www.cff.org/UploadedFiles/ research/ClinicalResearch/2006%20Patient%20Registry%20Report.pdf
6. Davies, J. C., Alton, E. W., & Bush, A. (2007). Cystic fibrosis. British Medical Journal, 335(7632), 1255-1259.
7. Donovan-Kicken, E., & Bute, J. J. (2008). Uncertainty of social network members in the case of communication-debilitating illness or injury. Qualitative Health Research, 18, 5-18.
8. Draucker, C. B., Martsolf, D. S., Ross, R., & Rusk, T. B. (2007). Theoretical sampling and category development in grounded theory. Qualitative Health Research, 17, 1137-1148.
9. Duff, A., & Brownlee, K. (2008). Psychosocial aspects of newborn screening programs for cystic fibrosis. Children's Health Care, 37(1), 21-37.
10. Farrell, P. M., Rosenstein, B. J., White, T. B., Accurso, F. J., Castellani, C., Cutting, G. R., et al. (2008). Guidelines for diagnosis of cystic fibrosis in newborns through older adults: Cystic Fibrosis Foundation consensus report. Journal of Pediatrics, 153(2), S4-S14.
11. Grob, R. (2008). Is my sick child healthy? Is my healthy child sick?: Changing parental experiences of cystic fibrosis in the age of expanded newborn screening. Social Science and Medicine, 67(7), 1056-1064.
12. Gross, J. J. (1999). Emotion and emotion regulation. In L. A. Pervin & O. P. John (Eds.), Handbook of personality: Theory and research (2nd ed., pp. 525-552). New York: Guilford Press.
13. Hutson, S. P. (2003). Attitudes and psychological impact of genetic testing, genetic counseling, and breast cancer risk assessment among women at increased risk. Oncology Nursing Forum, 30(2), 241-246.
14. Jedlicka-Köhler, I., Götz, M., & Eichler, I. (1996). Parents' recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics, 97(2), 204-209.
15. Maxwell, J. A. (1992). Understanding and validity in qualitative research. Harvard Educational Review, 62(3), 279-300.
16. Mishel, M. (1981). The measurement of uncertainty in illness. Nursing Research, 30(5), 258-263.
17. Mishel, M. H. (1988). Uncertainty in illness. Image: Journal of Nursing Scholarship, 20(4), 225-232.
18. Mishel, M. H. (1990). Reconceptualization of the uncertainty in illness theory. Image: Journal of Nursing Scholarship, 22(4), 256-262.
19. Mishel, M. H. (1999). Uncertainty in chronic illness. Annual Review of Nursing Research, 17, 269-294.
20. Mishel, M. H., & Braden, C. J. (1988). Finding meaning: Antecedents of uncertainty in illness. Nursing Research, 37(2), 98-103, 127.
21. Morse, J. M. (2000). Responding to the cues of suffering. Health Care for Women International, 21(1), 1-9.
22. Morse, J. M. (2001). Toward a praxis theory of suffering. Advances in Nursing Science, 24(1), 47-59.
23. Morse, J. M., Beres, M. A., Spiers, J. A., Mayan, M., & Olson, K. (2003). Identifying signals of suffering by linking verbal and facial cues. Qualitative Health Research, 13, 1063-1077.
24. National Newborn Screening and Genetics Resource Center. (2009). National newborn screening report. Retrieved August 12, 2009, from http://genes-r-us. uthscsa.edu/nbsdisorders.pdf/
25. Neville, K. L. (2003). Uncertainty in illness. An integrative review. Orthopaedic Nursing, 22(3), 206-214.
26. O'Hara, M. W., & Swain, A. (1996). Rates and risk of postpartum depression: A meta-analysis. International Review of Psychiatry, 8(1), 37-54.
27. Oliffe, J. L., Davison, B. J., Pickles, T., & Mróz, L. (2009). The self-management of uncertainty among men undertaking active surveillance for low-risk prostate cancer. Qualitative Health Research, 19, 432-443.
28. O'Neill, S. C., DeMarco, T., Peshkin, B. N., Rogers, S., Rispoli, J., Brown, K., et al. (2006). Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 142C(4), 251-259.
29. Parry, C. (2003). Embracing uncertainty: An exploration of the experiences of childhood cancer survivors. Qualitative Health Research, 13, 227-246.
30. Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to cystic fibrosis: A contextual analysis of the diagnosis phase. Journal of Pediatric Psychology, 17(6), 683-704.
31. Ratjen, F. (2008). Recent advances in cystic fibrosis. Paediatric Respiratory Reviews, 9(2), 144-148.
32. Richards, J. M., & Gross, J. J. (2000). Emotion regulation and memory: The cognitive cost of keeping one's cool. Journal of Personality and Social Psychology, 79(3), 410-424.
33. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
34. Strauss, A., & Corbin, J. (1994). Grounded theory methodology. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 273-285). Thousand Oaks, CA: Sage.
35. Tibben, A. (2007). Predictive testing for Huntington's disease. Brain Research Bulletin, 72(2-3), 165-171.
36. Tluczek, A., Koscik, R. L., Farrell, P. M., & Rock, M. J. (2005). Psychosocial risk associated with newborn screening for cystic fibrosis: Parents' experience while awaiting the sweat test appointment. Pediatrics, 115(6), 1692-1703.
37. Tluczek, A., Koscik, R. L., Modaff, P., Pfeil, D., Rock, M. J., Farrell, P. M., et al. (2006). Newborn screening for cystic fibrosis: Parents' preferences regarding counseling at the time of infants' sweat test. Journal of Genetic Counseling, 15(4), 277-291.
38. Tluczek, A., Orland, K. M., Nick, S. W., & Brown, R. L. (2009). Newborn screening: An appeal for improved parent education. Journal of Perinatal & Neonatal Nursing, 23(4), 1-9.
39. Twomey, J. G. (2006). Issues in genetic testing of children. MCN: The American Journal of Maternal Child Nursing, 31(3), 156-163.
40. Vesga-López, O., Blanco, C., Keyes, K., Olfson, M., Grant, B. F., & Hasin, D. S. (2008). Psychiatric disorders in pregnant and postpartum women in the United States. Archives of General Psychiatry, 65(7), 805-815.
41. Whitmarsh, I., Davis, A. M., Skinner, D., & Bailey, D. B., Jr. (2007). A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease. Social Science and Medicine, 65(6), 1082-1093.