One breath at a time: Living with cystic fibrosis

Journal of Pediatric Nursing

Volumn 19, Issue 1, 2004, Pages 25-32

  Carpenter, Dona Rinaldi ^a   Narsavage, Georgia L ^b  

^a UNIVERSITY OF SCRANTON   (United States)

^b NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CAREGIVER; CHILD CARE; CYSTIC FIBROSIS; DATA ANALYSIS; EXPERIENCE; FAMILY; HUMAN; LIFESTYLE; PARENTAL BEHAVIOR; SOCIAL SUPPORT;

EID: 1042278875     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pedn.2003.09.004     Document Type: Article

References (36)

1. Anderson D.G., Hatton D.C. Accessing vulnerable populations for research. Western Journal of Nursing Research. 22:2000;244-251.
2. Baine S., Rosenbaum P., King S. Chronic childhood illnesses What aspects of caregiving do parents value? Child Care Health and Development . 21:1995;291-304.
3. Bartholomew L.K., Vzyzewski D.I., Parcel G.S., Swank P.R., Sockrider M.M., Mariotto M.J., Schidlow D.V., Fink R.H., Seilheimer D.K. Self-management of cystic fibrosis Short-term outcomes of the Cystic Fibrosis Family Education Program . Health Education and Behavior. 24:1997;652-666.
4. Beck C.T. Qualitative research The evaluation of its credibility, fittingness, and audit ability . Western Journal of Nursing Research. 15:1993;263-265.
5. Brown M.A., Powell-Cope G.M. AIDS family caregiving transitions through uncertainty . Nursing Research. 40:1991;338-345.
6. Colaizzi P.F. Psychological research as the phenomenologist views it. Valle R., Kings M. Existential phenomenological alternatives for psychology. 1978;Oxford University Press, New York.
7. Pseudomonas Genome Project. 1998;. Available at: http:///www.pseudomonas. com/cystic-fibrosis.html, Accessed.
8. Cystic Fibrosis. 1997;NIH Publication 97-4200, Bethesda, Maryland. Available at: http://www.esiason.org , Accessed.
9. D'Auria J.P., Christian B.J., Richardson L.F. Through the looking glass children's perceptions of growing up with cystic fibrosis . Canadian Journal of Nursing Research. 29:1997;99-122.
10. Derouin D., Jessee P.O. Impact of chronic illness in childhood Siblings' perceptions . Issues in Comprehensive Pediatric Nursing. 19:1996;135-147.
11. Duffield R.A. Cystic fibrosis and the gastrointestinal tract. Journal of Pediatric Health Care. 10:1996;51-57.
12. Eiser C., Zprotch B., Hiller J., Havermans T., Billig S. Routine stresses in caring for a child with cystic fibrosis. Journal of Psychosomatic Research. 39:1995;641-646.
13. Englund A.D., Rydstrom I., Norberg A. Being the parent of a child with asthma. Pediatric Nursing. 27:2001;365-373.
14. Fiel S.B. Clinical management of pulmonary disease in cystic fibrosis. Lancet. 341:1993;1070-1074.
15. Geiss S.K., Hobbs S.A., Hammersley-Maercklein G., Kramer J.C., Henley M. Psychosocial factors related to perceived compliance with cystic fibrosis treatment. Journal of Clinical Psychology. 48:1992;99-103.
16. Geller G. Cystic fibrosis and the pediatric caregiver Benefits and burdens of genetic technology . Pediatric Nursing. 21:1995;57-61.
17. Guba E.G., Lincoln Y.S. Competing paradigms in qualitative research. Denzin N.K., Lincoln Y.S. Handbook of qualitative research. 1994;105-117 Sage, Thousand Oaks, CA.
18. Hopkins S. Advances in the treatment of cystic fibrosis. Nursing Times. 91:1995;40-41.
19. Hopkins K. Cystic fibrosis Approaching treatment from multiple directions . The Journal of NIH Research. 8:1996;40-43.
20. Lincoln Y.S., Guba E.G. Naturalistic inquiry. 1985;Sage, Beverly Hills, CA.
21. Myers M.F., Bernhardt B.A., Tambor E.S., Holtzman N.A. Involving consumers in the development of an educational program for cystic fibrosis carrier screening. American Journal of Human Genetics. 54:1994;719-726.
22. Pickler R.H., Munro C.L. Gene therapy for inherited disorders. Journal of Pediatric Nursing Nursing Care of Children and Families . 10:1995;40-47.
23. Reed S.B. Potential for alterations in family process when a family has a child with cystic fibrosis . Issues in Comprehensive Pediatric Nursing. 13:1990;15-23.
24. Ritchie J., Stewart M., Ellerton M., Thompsons D., Meade D., Viscount P.W. Parent's perceptions of the impact of a telephone support group intervention. Journal of Family Nursing. 6:2000;25-45.
25. Ryan L.L., Williams J.K. A cystic fibrosis handbook for teachers. Journal of Pediatric Nursing. 7:1996;304-311.
26. Sandelowski M. The problem of rigor in qualitative research. Advances in Nursing Science. 8:1986;27-37.
27. Sawyer E.H. Family functioning when children have cystic fibrosis. Journal of Pediatric Nursing. 7:1992;304-311.
28. Streubert H.J. The conduct of qualitative research Common essential themes . Streubert H.J., Carpenter D.R. Qualitative research in nursing Advancing the humanistic imperative . 3rd ed. 2003;Lippincott, Williams & Wilkins, Philadelphia.
29. Stewart M.J., Ritchie J.A., McGrath P., Thompson D., Bruce B. Mothers of children with chronic conditions Supportive and stressful interactions with partners and professional regarding caregiving burdens . Canadian Journal of Nursing Research. 26:1994;61-82.
30. Tracy J.P. Growing up with chronic illness The experience of growing up with cystic fibrosis . Holistic Nursing Practice. 12:1997;27-35.
31. White K.R., Munro C.L., Boyle A.H. Nursing management of adults who have cystic fibrosis. MedSurg Nursing. 5:1996;163-167.
32. Whyte D.A. A family nursing approach to the care of a child with a chronic illness. Journal of Advanced Nursing. 17:1992;317-327.
33. Williams J.L. Genetics and cystic fibrosis a focus on carrier testing . Pediatric Nursing. 21:1995;444-448.
34. Williams P.D., Hanson S., Karlin R., Ridder L., Liebergrn A., Olson J., Barnard M.U., Tobin-Rommerlhart S. Outcomes of a nursing intervention for siblings of chronically ill children a pilot study . Journal of the Society of Pediatric Nurses. 2:1997;127-137.
35. Wilmott R.W., Fiedler M.A. Recent advances in the treatment of cystic fibrosis. Pediatric Clinics of North America. 41:1994;431-451.
36. Yonge O., Stewin L. Reliability and validity Misnomers for qualitative research . The Canadian Journal of Nursing Research. 20:1988;61-67.