Ethical and logistical considerations of multicenter parental bereavement research

Journal of Palliative Medicine

Volumn 11, Issue 3, 2008, Pages 444-450

  Meert, Kathleen Lynn ^a,j   Eggly, Susan ^b   Dean, J Michael ^c   Pollack, Murray ^d   Zimmerman, Jerry ^e   Anand, K J S ^f   Newth, Christopher J L ^g   Willson, Douglas F ^h   Nicholson, Carol ⁱ  

^a CHILDREN'S HOSPITAL OF MICHIGAN   (United States)

^b WAYNE STATE UNIVERSITY   (United States)

^c UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

^d CHILDREN'S NATIONAL MEDICAL CENTER   (United States)

^e SEATTLE CHILDREN S HOSPITAL   (United States)

^f ARKANSAS CHILDREN S HOSPITAL   (United States)

^g CHILDREN S HOSPITAL LOS ANGELES   (United States)

^h UNIVERSITY OF VIRGINIA CHILDREN S HOSPITAL   (United States)

ⁱ EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT   (United States)

^j WAYNE STATE UNIVERSITY SCHOOL OF MEDICINE   (United States)

more..

Author keywords

[No Author keywords available]

Indexed keywords

BEREAVEMENT; BEREAVEMENT COUNSELING; CONFIDENTIALITY; INFORMATION PROCESSING; INFORMED CONSENT; INTERNET; MONITORING; MULTICENTER STUDY; PARENT; PRIVACY; RESEARCH ETHICS; REVIEW; RISK REDUCTION;

BEREAVEMENT; CHILD; CONFIDENTIALITY; ETHICS COMMITTEES, RESEARCH; ETHICS, RESEARCH; HUMANS; INFORMED CONSENT; MULTICENTER STUDIES AS TOPIC; NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT (U.S.); PARENTS; RESEARCH DESIGN; RESEARCHER-SUBJECT RELATIONS; UNITED STATES; VULNERABLE POPULATIONS;

EID: 41149164605     PISSN: 10966218     EISSN: None     Source Type: Journal    
DOI: 10.1089/jpm.2007.0120     Document Type: Review

References (34)

1. Genevro JL, Marshall T, Miller T; Center for the Advancement of Health: Report on bereavement and grief research. Death Stud 2004;28:491-575.
2. Stroebe M, Stroebe W, Schut H: Bereavement research: Methodological issues and ethical concerns. Palliat Med 2003;17:235-240.
3. Koenig BA, Back AL, Crawley LM: Qualitative methods in end-of-life research: Recommendations to enhance the protection of human subjects. J Pain Symptom Manage 2003;25:S43-52.
4. George LK: Research design in end-of-life research: State of science. Gerontologist 2002;42:86-98.
5. Addington-Hall J: Research sensitivities to palliative care patients. Eur J Cancer Care 2002;11:220-224.
6. Steeves R, Kahn D, Ropka ME, Wise C: Ethical considerations in research with bereaved families. Fam Community Health 2001;23:75-83.
7. Cook AS: Ethical issues in bereavement research: An overview. Death Stud 1995;19:103-122.
8. Parkes CM: Guidelines for conducting ethical bereavement research. Death Stud 1995;19:171-181.
9. Willson DF, Dean JM, Newth C, Pollack M, Anand KJ, Meert K, Carcillo J, Zimmerman J, Nicholson C: Collaborative Pediatric Critical Care Research Network (CPC-CRN). Pediatr Crit Care Med 2006;7:301-307.
10. Angus DC, Barnato AE, Linde-Zwirble WT, Weissfeld LA, Watson RS, Rickert T, Rubenfeld GD; Robert Wood Johnson Foundation ICU End-of-Life Peer Group: Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med 2004;320:638-643.
11. Field MJ, Behrman RE (eds): When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. Washington, D.C.: National Academy Press, 2003.
12. Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, Newth CJ, Dean JM, Willson DF, Nicholson C; National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network: Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit. J Pediatr 2007;151:50-55.
13. Prigerson HG, Maciejewski PK, Reynolds CF, Bierhals AJ, Newsom JT, Fasiczak A, Frank E, Doman J, Miller M: Inventory of Complicated Grief: A scale to measure mal-adaptive symptoms of loss. Psychiatry Res 1995;59:65-79.
14. Cook AS: The dynamics of ethical decision making in bereavement research. In: Stroebe MS, Hansson RO, Stroebe W, Schut H (eds): Handbook of Bereavement Research: Consequences, Coping and Care. Washington, DC: American Psychological Association, 2001, pp. 119-142.
15. National Bioethics Advisory Commission: Ethical and Policy Issues in Research Involving Human Participants, Volume 1. Bethesda, MD: National Bioethics Advisory Commission, 2001.
16. National Institutes of Health HIPAA privacy rule. Information for researchers. [updated February 2, 2007]. 〈http://privacyruleandresearch. nih.gov/pr_08.asp#83〉 (Last accessed March 29, 2007).
17. Steinhauser KE, Clipp EC, Hays JC, Olsen M, Arnold R, Christakis NA, Lindquist JH, Tulsky JA: Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliat Med 2006;20:745-754.
18. Sque M: Researching the bereaved: An investigator's experience. Nurs Ethics 2000;7:23-34.
19. Faden RR, Beauchamp TL: A History and Theory of Informed Consent. New York: Oxford University Press, 1986.
20. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL: Talking with terminally ill patients and their caregivers about death, dying and bereavement. Is it stressful? Is it helpful? Arch Intern Med 2004;164:1999-2004.
21. Sherman DW, McSherry CB, Parkas V, Ye XY, Calabrese M, Gatto M: Recruitment and retention in a longitudinal palliative care study. Appl Nurs Res 2005;18:167-177.
22. Kreling B, Wu AW, Lynn J: Survey methods for seriously ill hospitalized adults: Practical lessons from SUPPORT. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 2000;48:S168-175.
23. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research: Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: U.S. Government Printing Office, 1979.
24. Gold JL, Dewa CS: Institutional review boards and multi-site studies in health services research: Is there a better way? Health Serv Res 2005;40:291-307.
25. Silverman H, Hull SC, Sugarman J: Variability among institutional review boards' decisions within the context of a multicenter trial. Crit Care Med 2001;29:235-241.
26. Stair TO, Reed CR, Radeos MS, Koski G, Camargo CA: Variation in institutional review board responses to a standard protocol for a multicenter clinical trial. Acad Emerg Med 2001;8:636-641.
27. Meert KL, Thurston CS, Sarnaik AP: End-of-life decision-making and satisfaction with care: Parental perspectives. Pediatr Crit Care Med 2000;1:179-185.
28. Meert KL, Thurston CS, Thomas R: Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit. Pediatr Crit Care Med 2001;2:324-328.
29. Marcin JP, Schrembri MS, He J, Romano PS: A population-based analysis of socioeconomic status and insurance status and their relationship with pediatric trauma hospitalization and mortality rates. Am J Public Health 2003;93:461-466.
30. Demone JA, Gonzalez PC, Gauvreau K, Piercey GE, Jenkins KJ: Risk of death for Medicaid recipients undergoing congenital heart surgery. Pediatr Cardiol 2003;24:97-102.
31. Gonzalez PC, Gauvreau K, Demone JA, Piercey GE, Jenkins KJ: Regional racial and ethnic differences in mortality for congenital heart surgery in children may reflect unequal access to care. Pediatr Cardiol 2003;24:103-108.
32. Basu AM, Stephenson R: Low levels of maternal education and the proximate determinants of childhood mortality: A little learning is not a dangerous thing. Soc Sci Med 2005;60:2001-2023.
33. Clark D, Ingleton C, Seymour J: Support and supervision in palliative care research. Palliat Med 2000;14:441-446.
34. Neimeyer RA, Hogan NS: Quantitative or qualitative? Measurement issues in the study of grief. In: Stroebe MS, Hansson RO, Stroebe W, Schut H (eds): Handbook of Bereavement Research: Consequences, Coping and Care. Washington, D.C.: American Psychological Association, 2001, pp. 89-118.