-
1
-
-
34547868478
-
Challenges to participation in paediatric palliative care research: A review of the literature
-
DOI 10.1177/0269216307077173
-
Tomlinson D, Bartels U, Hendershot E, Constantin J, Wrathall G, Sung L. Challenges to participation in paediatric palliative care research: a review of the literature. Palliat Med. 2007;21(5): 435-440. (Pubitemid 47249607)
-
(2007)
Palliative Medicine
, vol.21
, Issue.5
, pp. 435-440
-
-
Tomlinson, D.1
Bartels, U.2
Hendershot, E.3
Constantin, J.4
Wrathall, G.5
Sung, L.6
-
2
-
-
0003433351
-
-
Geneva, Switzerland: Council for International Organizations of Medical Sciences; Accessed October 14, 2008.
-
Council for International Organizations of Medical Sciences (CIOMS). International Ethical Guidelines for Biomedical Research Involving Human Subjects. 3rd ed. Geneva, Switzerland: Council for International Organizations of Medical Sciences; 2002. http://www.cioms.ch/frame-guidelines-nov -2002.htm. Accessed October 14, 2008.
-
(2002)
International Ethical Guidelines for Biomedical Research Involving Human Subjects. 3rd Ed
-
-
-
3
-
-
2542561324
-
Ethical concerns about federal approval of risky pediatric studies
-
Kopelman LM, Murphy TF. Ethical concerns about federal approval of risky pediatric studies. Pediatrics. 2004;113(6):1783-1789.
-
(2004)
Pediatrics
, vol.113
, Issue.6
, pp. 1783-1789
-
-
Kopelman, L.M.1
Murphy, T.F.2
-
4
-
-
0003987250
-
-
US Department of Health and Human Services Accessed February 23, 2009.
-
US Department of Health and Human Services. Code of federal regulations, title 45: public welfare, part 46, protection of human subjects, subpart D. http://www.hhs.gov/ohrp/humansubjects /guidance/45cfr46.htm. Accessed February 23, 2009.
-
Code of Federal Regulations, Title 45: Public Welfare, Part 46, Protection of Human Subjects, Subpart D
-
-
-
5
-
-
0003987250
-
-
Accessed February 23, 2009.
-
US Department of Health and Human Services. Code of federal regulations, title 45: public welfare, part 46, protection of human subjects, subpart A. http://www.hhs.gov/ohrp/humansubjects /guidance/45cfr46.htm. Accessed February 23, 2009.
-
Code of Federal Regulations, Title 45: Public Welfare, Part 46, Protection of Human Subjects, Subpart A
-
-
-
6
-
-
1842855539
-
Research sensitivities to palliative care patients
-
Addington-Hall J. Research sensitivities to palliative care patients. Eur J Cancer Care (Engl). 2002; 11(3):220-224.
-
(2002)
Eur J Cancer Care (Engl)
, vol.11
, Issue.3
, pp. 220-224
-
-
Addington-Hall, J.1
-
7
-
-
0023185342
-
Equipoise and the ethics of clinical research
-
Freedman B. Equipoise and the ethics of clinical research. N Engl J Med. 1987;317(3):141-145.
-
(1987)
N Engl J Med
, vol.317
, Issue.3
, pp. 141-145
-
-
Freedman, B.1
-
8
-
-
33745272505
-
An evaluation of two subcutaneous infusion devices in children receiving palliative care
-
Breen M. An evaluation of two subcutaneous infusion devices in children receiving palliative care. Paediatr Nurs. 2006;18(4):38-40.
-
(2006)
Paediatr Nurs
, vol.18
, Issue.4
, pp. 38-40
-
-
Breen, M.1
-
9
-
-
33745317984
-
The Seattle pediatric palliative care project: Effects on family satisfaction and health-related quality of life
-
DOI 10.1089/jpm.2006.9.716
-
Hays RM, Valentine J, Haynes G, et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J Palliat Med. 2006;9(3):716-728. (Pubitemid 43938848)
-
(2006)
Journal of Palliative Medicine
, vol.9
, Issue.3
, pp. 716-728
-
-
Hays, R.M.1
Valentine, J.2
Haynes, G.3
Geyer, J.R.4
Villareale, N.5
Mckinstry, B.6
Varni, J.W.7
Churchill, S.S.8
-
10
-
-
0036142406
-
Family perspectives on the quality of Pediatric Palliative Care
-
Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;156(1):14-19. (Pubitemid 34049105)
-
(2002)
Archives of Pediatrics and Adolescent Medicine
, vol.156
, Issue.1
, pp. 14-19
-
-
Contro, N.1
Larson, J.2
Scofield, S.3
Sourkes, B.4
Cohen, H.5
-
11
-
-
0242329761
-
Bereaved parents' experience of research participation
-
DOI 10.1016/S0277-9536(03)00205-3
-
Dyregrov K. Bereaved parents' experience of research participation. Soc Sci Med. 2004;58(2): 391-400. (Pubitemid 37353051)
-
(2004)
Social Science and Medicine
, vol.58
, Issue.2
, pp. 391-400
-
-
Dyregrov, K.1
-
12
-
-
34147212784
-
Participatory research in pediatric palliative care: Benefits and challenges
-
Mongeau S, Champagne M, Liben S. Participatory research in pediatric palliative care: benefits and challenges. J Palliat Care. 2007;23(1):5-13.
-
(2007)
J Palliat Care
, vol.23
, Issue.1
, pp. 5-13
-
-
Mongeau, S.1
Champagne, M.2
Liben, S.3
-
13
-
-
0033974445
-
Are postbereavement research interviews distressing to carers? Lessons learned from palliative care research
-
Seamark DA, Gilbert J, Lawrence CJ, Williams S. Are postbereavement research interviews distressing to carers? lessons learned from palliative care research. Palliat Med. 2000;14(1):55-56. (Pubitemid 30095226)
-
(2000)
Palliative Medicine
, vol.14
, Issue.1
, pp. 55-56
-
-
Seamark, D.A.1
Gilbert, J.2
Lawrence, C.J.3
Williams, S.4
-
14
-
-
33846018943
-
Research with bereaved parents: A question of how not why
-
DOI 10.1177/0269216306072349
-
Hynson JL, Aroni R, Bauld C, Sawyer SM. Research with bereaved parents: a question of how not why. Palliat Med. 2006;20(8):805-811. (Pubitemid 46040132)
-
(2006)
Palliative Medicine
, vol.20
, Issue.8
, pp. 805-811
-
-
Hynson, J.L.1
Aroni, R.2
Bauld, C.3
Sawyer, S.M.4
-
15
-
-
0033832080
-
Are special ethical guidelines needed for palliative care research?
-
Casarett DJ, Karlawish JH. Are special ethical guidelines needed for palliative care research? J Pain Symptom Manage. 2000;20(2):130-139.
-
(2000)
J Pain Symptom Manage
, vol.20
, Issue.2
, pp. 130-139
-
-
Casarett, D.J.1
Karlawish, J.H.2
-
16
-
-
0034055473
-
What influences participation in clinical trials in palliative care in a cancer centre?
-
DOI 10.1016/S0959-8049(99)00330-5, PII S0959804999003305
-
Ling J, Rees E, Hardy J. What influences participation in clinical trials in palliative care in a cancer centre? Eur J Cancer. 2000;36(5):621-626. (Pubitemid 30156848)
-
(2000)
European Journal of Cancer
, vol.36
, Issue.5
, pp. 621-626
-
-
Ling, J.1
Rees, E.2
Hardy, J.3
-
17
-
-
32044459218
-
End-of-life care preferences of pediatric patients with cancer
-
DOI 10.1200/JCO.2005.10.538
-
Hinds PS, Drew D, Oakes LL, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol. 2005;23(36):9146-9154. (Pubitemid 46260169)
-
(2005)
Journal of Clinical Oncology
, vol.23
, Issue.36
, pp. 9146-9154
-
-
Hinds, P.S.1
Drew, D.2
Oakes, L.L.3
Fouladi, M.4
Spunt, S.L.5
Church, C.6
Furman, W.L.7
-
18
-
-
33947228371
-
Determining risk in pediatric research with no prospect of direct benefit: Time for a national consensus on the interpretation of federal regulations
-
Fisher CB, Kornetsky SZ, Prentice ED. Determining risk in pediatric research with no prospect of direct benefit: time for a national consensus on the interpretation of federal regulations. Am J Bioeth. 2007;7(3):5-10.
-
(2007)
Am J Bioeth
, vol.7
, Issue.3
, pp. 5-10
-
-
Fisher, C.B.1
Kornetsky, S.Z.2
Prentice, E.D.3
-
20
-
-
38149002118
-
Children's and their parents' views on facing research risks for the benefit of others
-
Wendler D, Jenkins T. Children's and their parents' views on facing research risks for the benefit of others. Arch Pediatr Adolesc Med. 2008; 162(1):9-14.
-
(2008)
Arch Pediatr Adolesc Med
, vol.162
, Issue.1
, pp. 9-14
-
-
Wendler, D.1
Jenkins, T.2
-
21
-
-
0037385040
-
Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life
-
DOI 10.1016/S0885-3924(03)00056-3
-
Fine PG. Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life. J Pain Symptom Manage. 2003; 25(4):S53-S62. (Pubitemid 36411802)
-
(2003)
Journal of Pain and Symptom Management
, vol.25
, Issue.4
-
-
Fine, P.G.1
-
22
-
-
0141702216
-
Palliative care research protocols: A special case for ethical review?
-
DOI 10.1191/0269216303pm786oa
-
Stevens T, Wilde D, Paz S, Ahmedzai SH, Rawson A, Wragg D. Palliative care research protocols: a special case for ethical review? Palliat Med. 2003;17(6):482-490. (Pubitemid 37160886)
-
(2003)
Palliative Medicine
, vol.17
, Issue.6
, pp. 482-490
-
-
Stevens, T.1
Wilde, D.2
Paz, S.3
Ahmedzai, S.H.4
Rawson, A.5
Wragg, D.6
-
23
-
-
0028959392
-
Informed consent, parental permission, and assent in pediatric practice
-
American Academy of Pediatrics Committee on Bioethics
-
American Academy of Pediatrics Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;95(2):314-317.
-
(1995)
Pediatrics
, vol.95
, Issue.2
, pp. 314-317
-
-
-
24
-
-
0037329077
-
Informed consent for pediatric research: Is it really possible?
-
DOI 10.1067/mpd.2003.64
-
Kodish E. Informed consent for pediatric research: is it really possible? J Pediatr. 2003; 142(2):89-90. (Pubitemid 36232889)
-
(2003)
Journal of Pediatrics
, vol.142
, Issue.2
, pp. 89-90
-
-
Kodish, E.1
-
25
-
-
44449156827
-
Communicating with children and families: From everyday interactions to skill in conveying distressing information
-
American Academy of Pediatrics Committee on Bioethics
-
Levetown M; American Academy of Pediatrics Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics. 2008;121(5):e1441-e1460.
-
(2008)
Pediatrics
, vol.121
, Issue.5
-
-
Levetown, M.1
-
26
-
-
34249688531
-
Conducting end-of-life studies in pediatric oncology
-
Hinds PS, Burghen EA, Pritchard M. Conducting end-of-life studies in pediatric oncology. West J Nurs Res. 2007;29(4):448-465.
-
(2007)
West J Nurs Res
, vol.29
, Issue.4
, pp. 448-465
-
-
Hinds, P.S.1
Burghen, E.A.2
Pritchard, M.3
-
28
-
-
4544239131
-
Talking about death with children who have severe malignant disease
-
DOI 10.1056/NEJMoa040366
-
Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351(12):1175-1186. (Pubitemid 39296305)
-
(2004)
New England Journal of Medicine
, vol.351
, Issue.12
, pp. 1175-1186
-
-
Kreicbergs, U.1
Valdimarsdottir, U.2
Onelov, E.3
Henter, J.-I.4
Steineck, G.5
-
29
-
-
0033044159
-
Disclosure of illness status to children and adolescents with HIV infection
-
American Academy of Pediatrics Committee on Pediatrics AIDS
-
American Academy of Pediatrics Committee on Pediatrics AIDS. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics. 1999;103(1):164-166.
-
(1999)
Pediatrics
, vol.103
, Issue.1
, pp. 164-166
-
-
-
30
-
-
0033126769
-
A historical perspective of informed consent in clinical practice and research
-
Nelson-Marten P, Rich BA. A historical perspective of informed consent in clinical practice and research. Semin Oncol Nurs. 1999;15(2):81-88.
-
(1999)
Semin Oncol Nurs
, vol.15
, Issue.2
, pp. 81-88
-
-
Nelson-Marten, P.1
Rich, B.A.2
-
32
-
-
33745813892
-
Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
-
DOI 10.1016/j.ejon.2005.11.003, PII S1462388905001547
-
Tomlinson D, Capra M, Gammon J, et al. Parental decision making in pediatric cancer end-oflife care: using focus group methodology as a prephase to seek participant design input. Eur J Oncol Nurs. 2006;10(3):198-206. (Pubitemid 44028627)
-
(2006)
European Journal of Oncology Nursing
, vol.10
, Issue.3
, pp. 198-206
-
-
Tomlinson, D.1
Capra, M.2
Gammon, J.3
Volpe, J.4
Barrera, M.5
Hinds, P.S.6
Bouffet, E.7
Geenberg, M.L.8
Baruchel, S.9
Llewellyn-Thomas, H.A.10
Sung, L.11
-
33
-
-
36849069884
-
Clinical trials and medical care: Defining the therapeutic misconception
-
Henderson GE, Churchill LR, Davis AM, et al. Clinical trials and medical care: defining the therapeutic misconception. PLoS Med. 2007;4(11):e324.
-
(2007)
PLoS Med
, vol.4
, Issue.11
-
-
Henderson, G.E.1
Churchill, L.R.2
Davis, A.M.3
-
34
-
-
2342464377
-
Therapeutic misconception in clinical research: Frequency and risk factors
-
Appelbaum PS, Lidz CW, Grisso T. Therapeutic misconception in clinical research: frequency and risk factors. IRB. 2004;26(2):1-8.
-
(2004)
IRB
, vol.26
, Issue.2
, pp. 1-8
-
-
Appelbaum, P.S.1
Lidz, C.W.2
Grisso, T.3
-
37
-
-
0034694856
-
World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects
-
World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2000;284(23): 3043-3045. (Pubitemid 32014743)
-
(2000)
Journal of the American Medical Association
, vol.284
, Issue.23
, pp. 3043-3045
-
-
|