Parents' experiences in decision making with childhood cancer clinical trials

Cancer Nursing

Volumn 33, Issue 1, 2010, Pages 11-18

  Woodgate, Roberta Lynn ^a   Yanofsky, Rochelle Avis ^b  

^a UNIVERSITY OF MANITOBA   (Canada)

^b UNIVERSITY OF MANITOBA   (Canada)

Author keywords

Children with cancer; Clinical trials; Decision making; Interpretive description; Parents; Qualitative research

Indexed keywords

ADULT; ARTICLE; CHILDHOOD CANCER; CLINICAL RESEARCH; CONTROLLED STUDY; DECISION MAKING; EXPERIENCE; FEMALE; HUMAN; INTERVIEW; MALE; PARENT; PRIORITY JOURNAL; QUALITATIVE RESEARCH; SUPPORT GROUP;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; BIOMEDICAL RESEARCH; CANADA; CHILD; CHILD, PRESCHOOL; CLINICAL TRIALS AS TOPIC; CONSUMER PARTICIPATION; CONSUMER SATISFACTION; DECISION MAKING; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFANT; INFANT, NEWBORN; MALE; MIDDLE AGED; NEOPLASMS; PARENT-CHILD RELATIONS; PARENTS; PERCEPTION; PROFESSIONAL-FAMILY RELATIONS; QUALITATIVE RESEARCH; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 74349112768     PISSN: 0162220X     EISSN: None     Source Type: Journal    
DOI: 10.1097/NCC.0b013e3181b43389     Document Type: Article

References (32)

1. Holm KE, Patterson JM, Gurney JG. Parental involvement and familycentered care in the diagnostic and treatment phases of childhood cancer: results from a qualitative study. J Pediatr Oncol Nurs. 2003;20(6):301-313.
2. Angst D, Deatrick J. Involvement in health care decisions: parents and children with chronic illness. J Fam Nurs. 1996;2(2):174-194.
3. Kirschbaum M, Knafl K. Major themes in parent-provider relationships: a comparison of life-threatening and chronic illness experiences. J Fam Nurs. 1996;2(2):195-216.
4. Pyke-Grimm K, Stewart J, Kelly K, Degner L. Parents of children with cancer: factors influencing their treatment decision making roles. J Pediatr Nurs. 2006;21(5):350-361.
5. Deatrick J, AngstD,Moore C. Parents views of their children's participation in phase 1 oncology clinical trials. J Pediatr Oncol Nurs. 2002;19(4):114-121.
6. Hinds P, Oakes L, Furman W, et al. Decision making by parents and health care professionals when considering continued care for pediatric patients with cancer. Oncol Nurs Forum. 1997;24:1523-1528.
7. Hinds P, Oakes L, Furman W, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology. Cancer Nurs. 2001;24:122-136.
8. Hinds P, Drew D, Oakes L, et al. End-of-life care p of pediatric patients with cancer. J Clin Oncol. 2005;23(36):9146-9154.
9. Kane JR, Hellsten MB, Coldsmith A. Human suffering: the need for relationship-based research in pediatric end-of-life care. J Pediatr Oncol Nurs. 2004;21(3):180-185.
10. Snethen J, Broome M, Knafl K, Deatrick J, Angst D. Family patterns of decision-making in pediatric clinical trials. Res Nurs Health. 2006;29:223-232.
11. Kodish E, Eder M, Noll R, et al. Communication of randomization in childhood leukemia trials. JAMA. 2004;291(4):470-475.
12. Eder M, Yamokoski A, Wittmann P, Kodish E. Leukemia improving informed consent: suggestions from parents of children with leukemia. Pediatrics. 2007;119:e849-e859.
13. Fernandez C, Kodish E, Shurin S, Weijer C. Offering to return results to research participants: attitude and needs of principal investigators in the Children's oncology Group. J Pediatr Hematol Oncol. 2003;25(9):704-708.
14. Wiley FM, Ruccione K, Moore I, et al. Parents' perceptions of randomization in pediatric clinical trials. Cancer Pract. 1999;7(5):248-256.
15. Simon C, Zyzanski J, Eder M, Raiz P, Kodish E, Siminoff L. Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer. J Clin Oncol. 2003;11(1):2173-2178.
16. Simon C, Eder M, Raiz P, Zyzanski J, Pentz R, Kodish E. Informed consent for pediatric leukemia research. Cancer. 2001;92(3):691-700.
17. Kupst M, Patenaude A, Walco G, Sterling C. Clinical trials in pediatric cancer: parental perspectives on informed consent. J Pediatr Hematol Oncol. 2003;25(10):787-790.
18. Pletsch P, Stevens P. Children in research: Informed consent and critical factors affecting mothers. J Fam Nurs. 2001;7(1):50-79.
19. Liaschenko J, Underwood S. Children in research: fathers in cancer researchmeanings and reason for participation. J Fam Nurs. 2001;7(1):71-91.
20. Hinds P, Oakes L, Quargnenti A, et al. Challenges and issues in conducting descriptive decision-making studies in pediatric oncology: a tale of two studies. J Pediatr Oncol Nurs. 1998;15(3)suppl 1:10-17.
21. Hinds P, Oakes L, Furman W. End of life decision-making in pediatric oncology. In Ferrell B, Coyle N, eds. Oxford Textbook of Palliative Nursing Care. New York: Oxford University Press; 2001:450-460.
22. Thorne S, Kirkham S, MacDonald-Emes J. Interpretive description: a noncategorical qualitative alternative for developing nursing knowledge. Res Nurs Health. 1997;20:169-177.
23. Thorne S, Kirkham S, O'Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Methods. 2004;3(1):Article 1. http://www. ualberta.ca/~iiqm/backissues/3-1/pdf/thorneetal.pdf. Accessed January 2006.
24. Patton M. Qualitative Evaluation and Research Methods. Newbury Park, CA: Sage; 1990.
25. Levi R, Marsick R, Drotar D, Kodish E. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000;22(1):3-12.
26. Levy R, Hollan D. Person-centred interviewing and observation. In Bernard HR, ed. Handbook of Methods in Cultural Anthropology. Walnut Creek, CA: AltaMira Press; 1998:333-364.
27. Morse J, Field P. Qualitative Research Methods for Health Professionals. Thousand Oaks, CA: Sage; 1995.
28. Strauss A, Corbin J. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage; 1990.
29. Lincoln Y, Guba E. Naturalistic Inquiry. Thousand Oaks, CA: Sage; 1985.
30. Woodgate RL. Living in a world without closure: reality for parents who have experienced the death of a child. J Palliat Care. 2006;22(2):75-82.
31. Simon C, Eder M, Kodish E, Siminoff L. Altruistic discourse in the informed consent process for childhood cancer clinical trials. AJOB. 2006; 6(5):40-47.
32. Melo-MartNn I, Ho A. Beyond informed consent: the therapeutic misconception and trust. J Med Ethics. 2008;34:202-205.