Validity and consequence of informed consent in pediatric bone marrow transplantation: The parental experience

Pediatric Blood and Cancer

Volumn 49, Issue 6, 2007, Pages 846-851

  Benedict, Jan M ^a   Simpson, Christy ^a   Fernandez, Conrad V ^a  

^a DALHOUSIE UNIVERSITY   (Canada)

Author keywords

Consent; Ethics; Hope; Stem cell transplantation; Supportive care

Indexed keywords

ANXIETY; ARTICLE; BONE MARROW TRANSPLANTATION; CHILDHOOD CANCER; DIVORCE; EXPECTATION; GRAFT VERSUS HOST REACTION; HOSPITAL READMISSION; HUMAN; INFORMED CONSENT; PARENTAL CONSENT; PRIORITY JOURNAL; SEMI STRUCTURED INTERVIEW; SOCIAL ASPECT; STRESS; VALIDITY;

ADULT; ATTITUDE TO HEALTH; BONE MARROW TRANSPLANTATION; CHILD; CHILD, PRESCHOOL; FEMALE; HUMANS; INTERVIEWS; MALE; PARENT-CHILD RELATIONS; PARENTAL CONSENT; PARENTS;

EID: 34948893380     PISSN: 15455009     EISSN: 15455017     Source Type: Journal    
DOI: 10.1002/pbc.21073     Document Type: Article

References (33)

1. Dobkin PL, Poirier RM, Bonny Y. Family factors affecting bone marrow transplantation. Psychother Psychosom 1995;64:102-108.
2. Broers S, Kaptein AA, Le Cessie S, et al. Psychological functioning and quality of life following bone marrow transplantation: A 3-year follow-up study. J Psychosom Res 2000;48:11-21.
3. Buchsel PC, Leum EW, Randolph SR. Delayed complications of bone marrow transplantation: An update. Oncol Nurs Forum 1996; 23:1276-1291.
4. Camitta BM. Bone marrow transplantation for children with acquired or congenital failure. Int J Pediatr Hematol/Oncol 1999;6: 283-290.
5. Phipps S, Dunavant M, Srivastava DK, et al. Cognitive and academic functioning in survivors of pediatric bone marrow transplantation. J Clin Oncol 2000;18:1004-1011.
6. Nespoli L, Verri AP, Locatelli F, et al. The impact of pediatric bone marrow transplantation on quality of life. Qual Life Res 1995;4: 233-240.
7. Stuber ML, Nader K, Yasuda P, et al. Stress responses after pediatric bone marrow transplantation: Preliminary results of a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry 1991;30:952-957.
8. Davies SM, Kollman C, Anasetti C, et al. Engraftment and survival after unrelated-donor bone marrow transplantation: A report from the National Donor Program. Blood 2002;96:4096-4102.
9. Kodish E, Lantos J, Stocking C, et al. Bone marrow transplantation for sickle cell disease: A study of parents' decisions. N Engl J Med 1991;325:1349-1353.
10. Prows CA, McCain GC. Parental consent for bone marrow transplantation in the case of genetic disorders. J Spec Pediatr Nurs 1997;2:9-18.
11. Stevens PE, Pletsch PK. Ethical issues of informed consent: Mothers' experience enrolling their children in bone marrow transplantation research. Cancer Nurs 2002;25:81-87.
12. Taylor B. Parental autonomy and consent to treatment. J Adv Nurs 1999;29:570-576.
13. Oppenheim D, Valteau-Couanet D, Vasselon S, et al. How do parents perceive high-dose chemotherapy and autologous stem cell transplantation for their children. Bone Marrow Transplant 2002; 30:35-39.
14. Dermatis H, Lesko LM. Psychological distress in parents consenting to child's bone marrow transplantation. Bone Marrow Transplant 1990;6:411-417.
15. Kodish E, Eder M, Noll RB, et al. Communication of randomization in childhood leukemia trials. JAMA 2004;291:470-475.
16. Barrera M, Pringle LAB, Sumbler K, et al. Quality of life behavioral adjustment after pediatric bone marrow transplantation. Bone Marrow Transplant 2000;26:427-435.
17. Fife BL, Huster GA, Cornetta KG, et al. Longitudinal study of adaptation to the stress of bone marrow transplantation. J Clin Oncol 2000;18:1539-1549.
18. Keogh F, O'Riordan J, McNamara C, et al. Psychosocial adaptation of patients and families following bone marrow transplantation: A prospective, longitudinal study. Bone Marrow Transplant 1998;22: 905-911.
19. Manne S, DuHamel K, Nereo N, et al. Predictors of PTSD in mothers of children undergoing bone marrow transplantation: The role of cognitive and social processes. J Pediatr Psychol 2002;27: 607-617.
20. Nelson AE, Miles MS, Belyea MJ. Coping and support effects on mothers' stress responses to their child's hematopoietic stem cell transplantation. J Pediatr Oncol Nurs 1997;14:202-212.
21. Phipps S, Dunavant M, Lensing S, et al. Patterns of distress in parents of children undergoing stem cell transplantation. Pediatr Blood Cancer 2004;43:267-274.
22. Phipps S, Mullhern RK. Family cohesion and expressiveness promote resilience to the stress of pediatric bone marrow transplant: A preliminary report. J Dev Behav Pediatr 1995;16:257-263.
23. Rodrigue JR, MacNaughton K, Hoffman RG, et al. Transplantation in children; A longitudinal assessment of mothers' stress, coping, and perceptions of family functioning. Psychosomatics 1997;38: 478-486.
24. Trask PC, Paterson AG, Trask CL, et al. Parent and adolescent adjustment to pediatric cancer: Associations with coping, social support and family function. J Pediatr Oncol Nurs 2003;20:36-47.
25. Eden OB. Consent difficult in pediatric oncology. BMJ 1994;308: 272 (letter).
26. Trask PC, Paterson A, Riha M, et al. Assessment of psychological distress in prospective bone marrow transplant patients. Bone Marrow Transplant 2002;29:917-925.
27. Melnyk BM, Feinstein NF. Mediating functions of maternal anxiety and participation in care on young children's posthospital adjustment. Res Nurs Health 2001;24:18-26.
28. Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA, et al. Psychological adaptation and social support of parents of pediatric cancer patients: A prospective longitudinal study. J Pediatr Psychol 2001; 26:225-235.
29. Sormanti M, Dungan S, Rieker PP. Pediatric bone marrow transplantation: Psychological issues for parents after a child's hospitalization. J Psychol Oncol 1994;12:23-42.
30. Siston AK, List MA, Daugherty CK, et al. Psychosocial adjustment of patients and caregivers prior to allogeneic bone marrow transplantation. Bone Marrow Transplant 2001;27:1181-1188.
31. Yeh CH. Gender differences of parental distress in children with cancer. J Adv Nurs 2002;38:598-606.
32. Lee ML, Cohen SE, Stuber ML, et al. Parent-child interactions with pediatric fillet marrow transplant patients. J Psychosoc Oncol 1994; 12:43-60.
33. Phipps S, Dunavant M, Lensing S, et al. Acute health-related quality of life in children undergoing stem cell transplant: II. Medical and demographic determinants. Bone Marrow Transplant 2002;29:435-442.