Factors related to voluntary parental decision-making in pediatric oncology

Pediatrics

Volumn 129, Issue 5, 2012, Pages 903-909

  Miller, Victoria A ^a   Nelson, Robert M ^b  

^a UNIVERSITY OF PENNSYLVANIA   (United States)

^b CENTER FOR DRUG EVALUATION AND RESEARCH   (United States)

Author keywords

Decision making; Ethics; Informed consent; Oncology; Parental permission; Pediatrics

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; CHILD CARE; CHILDHOOD CANCER; CONTROLLED STUDY; DECISION MAKING; EDUCATIONAL STATUS; ETHNIC DIFFERENCE; FEMALE; HUMAN; INTENSIVE CARE; MALE; MEDICAL DECISION MAKING; OUTCOME ASSESSMENT; PARENTAL ATTITUDE; PARENTAL NOTIFICATION; PRIORITY JOURNAL; SEX DIFFERENCE; VOLUNTARY PARENTAL DECISION MAKING; VOLUNTEER;

ADULT; ANTINEOPLASTIC PROTOCOLS; CHILD; DECISION MAKING; EDUCATIONAL STATUS; ETHICS, MEDICAL; FEMALE; HUMANS; INFORMED CONSENT; MALE; MULTIVARIATE ANALYSIS; NEOPLASMS; PARENTAL CONSENT; PARENTS; PATIENT SELECTION; PROFESSIONAL-FAMILY RELATIONS; UNITED STATES; VOLITION;

EID: 84860600340     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2011-3056     Document Type: Article

References (30)

1. Kodish E, Eder M, Noll RB, et al. Communication of randomization in childhood leukemia trials. JAMA. 2004;291(4):470-475 (Pubitemid 38129751)
2. Miller VA, Drotar D, Burant C, Kodish E. Clinician-parent communication during informed consent for pediatric leukemia trials. J Pediatr Psychol. 2005;30(3):219-229 (Pubitemid 40464142)
3. Tait AR, Voepel-Lewis T, Malviya S. Do they understand? (part I): parental consent for children participating in clinical anesthesia and surgery research. Anesthesiology. 2003;98(3):603-608 (Pubitemid 36262584)
4. Zupancic JA, Gillie P, Streiner DL, Watts JL, Schmidt B. Determinants of parental authorization for involvement of newborn infants in clinical trials. Pediatrics. 1997;99(1). Available at: www.pediatrics.org/cgi/content/full/ 99/1/e6
5. Rothmier JD, Lasley MV, Shapiro GG. Factors influencing parental consent in pediatric clinical research. Pediatrics. 2003;111 (5 Pt 1):1037-1041 (Pubitemid 36542618)
6. Stevens PE, Pletsch PK. Ethical issues of informed consent: mothers' experiences enrolling their children in bone marrow transplantation research. Cancer Nurs. 2002; 25(2):81-87 (Pubitemid 34263931)
7. Jacoby LH, Maloy B, Cirenza E, Shelton W, Goggins T, Balint J. The basis of informed consent for BMT patients. Bone Marrow Transplant. 1999;23(7):711-717 (Pubitemid 29176536)
8. Pyke-Grimm KA, Stewart JL, Kelly KP, Degner LF. Parents of children with cancer: factors influencing their treatment decision making roles. J Pediatr Nurs. 2006; 21(5):350-361 (Pubitemid 44374304)
9. Levi RB, Marsick R, Drotar D, Kodish ED. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000; 22(1):3-12 (Pubitemid 32266831)
10. Kupst MJ, Patenaude AF, Walco GA, Sterling C. Clinical trials in pediatric cancer: parental perspectives on informed consent. J Pediatr Hematol Oncol. 2003;25(10):787-790 (Pubitemid 37238768)
11. Hinds PS, Oakes L, Quargnenti A, et al. An international feasibility study of parental decision making in pediatric oncology. Oncol Nurs Forum. 2000;27(8):1233-1243
12. Benedict JM, Simpson C, Fernandez CV. Validity and consequence of informed consent in pediatric bone marrow transplantation: the parental experience. Pediatr Blood Cancer. 2007;49(6):846-851 (Pubitemid 47519525)
13. McKenna K, Collier J, Hewitt M, Blake H. Parental involvement in paediatric cancer treatment decisions. Eur J Cancer Care (Engl). 2010;19(5):621-630
14. Simon C, Zyzanski SJ, Eder M, Raiz P, Kodish ED, Siminoff LA. Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer. J Clin Oncol. 2003;21(11):2173-2178 (Pubitemid 46606366)
15. Breese PE, Burman WJ, Goldberg S, Weis SE. Education level, primary language, and comprehension of the informed consent process. J Empir Res Hum Res Ethics. 2007; 2(4):69-79
16. Nelson RM, Merz JF. Voluntariness of consent for research: an empirical and conceptual review. Med Care. 2002;40(suppl 9): V69-V80
17. Hewlett S. Consent to clinical research - adequately voluntary or substantially influenced? J Med Ethics. 1996;22(4):232-237 (Pubitemid 26278513)
18. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York, NY: Oxford University Press; 2001
19. Eder ML, Yamokoski AD, Wittmann PW, Kodish ED. Improving informed consent: suggestions from parents of children with leukemia. Pediatrics. 2007;119(4). Available at: www.pediatrics.org/cgi/content/full/119/ 4/e849
20. Nelson RM, Beauchamp TL, Miller VA, Reynolds WW, Ittenbach RF, Luce MF. The concept of voluntary consent. Am J Bioeth. 2011;11(8):6-16
21. Miller VA, Ittenbach RF, Harris D, et al. The Decision Making Control Instrument to assess voluntary consent. Med Decis Making. 2011;31(5):730-741
22. Miller VA, Reynolds WW, Ittenbach RF, Luce MF, Beauchamp TL, Nelson RM. Challenges in measuring a new construct: perception of voluntariness for research and treatment decision making. J Empir Res Hum Res Ethics. 2009;4(3):21-31
23. Miller VA, Luce MF, Nelson RM. Relationship of external influence to parental distress in decision making regarding children with a life-threatening illness. J Pediatr Psychol. 2011;36(10):1102-1112
24. Pyke-Grimm KA, Degner L, Small A, Mueller B. Preferences for participation in treatment decision making and information needs of parents of children with cancer: A pilot study. J Pediatr Oncol Nurs. 1999; 16(1):13-24
25. Gagnon EM, Recklitis CJ. Parents' decision-making preferences in pediatric oncology: the relationship to health care involvement and complementary therapy use. Psychooncology. 2003;12(5):442-452 (Pubitemid 36873980)
26. Tait AR, Voepel-Lewis T, Munro HM, Malviya S. Parents' preferences for participation in decisions made regarding their child's anaesthetic care. Paediatr Anaesth. 2001;11 (3):283-290 (Pubitemid 32434153)
27. Krantz DS, Baum A, Wideman M. Assessment of preferences for self-treatment and information in health care. J Pers Soc Psychol. 1980;39(5):977-990
28. Yap TY, Yamokoski A, Noll RB, Drotar D, Zyzanski S, Kodish ED; Multi-site Intervention Study to Improve Consent Research Team. A physician-directed intervention: teaching and measuring better informed consent. Acad Med. 2009;84(8):1036-1042
29. Yamokoski AD, Hazen RA, Kodish ED. Anticipatory guidance to improve informed consent: a new application of the concept. J Pediatr Oncol Nurs. 2008;25(1):34-43
30. Schenker Y, Fernandez A, Sudore R, Schillinger D. Interventions to improve patient comprehension in informed consent for medical and surgical procedures: a systematic review. Med Decis Making. 2011;31(1):151-173