Research priorities in pediatric palliative care: A delphi study

Journal of Palliative Care

Volumn 24, Issue 4, 2008, Pages 229-239

  Steele, Rose ^a   Bosma, Harvey ^b   Johnston, Meaghen Fletcher ^b   Cadell, Susan ^c   Davies, Betty ^d   Siden, Hal ^b   Straatman, Lynn ^e  

^a York University   (Canada)

^b UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^c WILFRID LAURIER UNIVERSITY   (Canada)

^d UNIVERSITY OF CALIFORNIA   (United States)

^e UNIVERSITY OF BRITISH COLUMBIA   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 59849106838     PISSN: 08258597     EISSN: None     Source Type: Journal    
DOI: 10.1177/082585970802400402     Document Type: Article

References (49)

1. World Health Organization. WHO Definition of Palliative Care. Generva: WHO. Available at: http://www.who.int/cancer/palliative/definition/en/. Accessed July 6, 2006.
2. Canadian Hospice Palliative Care Association, Canadian Network of Palliative Care for Children. Pediatric Hospice Palliative Care: Guiding principles and norms of practice. Ottawa: CHPCA, March 2006.
3. Mack JW, Wolfe J. Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Curr Opin Pediatr 2006; 18(1): 10-4.
4. Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT), Royal College of Paediatrics and Child Health. A Guide to the development of children's palliative care services. London: RCPCH, September 2003.
5. Statistics Canada, Health Statistics Division. Mortality, Summary List of Causes. 2003; 84F0209XIE. Ottawa: Statistics Canada, 2003.
6. Lenton S, Stallard P, Lewis M, Mastroyannopoulou K. Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood. Child Care Health Dev 2001; 27(5): 389-398.
7. Cooley C, Adeodu S, Aldred H, Beesley S, Leung A, Thacker L. Paediatric palliative care: a lack of research- based evidence. Int J Palliat Nurs 2000; 6(7): 346-351.
8. American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000; 106(2 Ft 1): 351-357.
9. Committee on Palliative and End-of-Life Care for Children and Their Families. Board on Health Sciences Policy, eds. When Children Die: Improving palliative and end of life care for children and their families. Washington, D.C.: The National Academies Press, 2003.
10. Pritchard M, Davies B. End of life in pediatric oncology: How clinical practice leads to research. J Pediatr Oncol Nurs 2002; 19(6): 191-197.
11. Hunt A, Hain R, Jassal S, Thompson A. Pediatric palliative care: Where and what is published? Arch Dis Child 2003; 88(suppl 1): A61-A63.
12. Hutton N. Pediatric palliative care: The time has come. Arch Pediatr Adolesc Med 2002; 156(1): 9-10.
13. Hare ML. Comparing research priorities for pediatric oncology from two panels of experts. Semin Oncol Nurs 2005; 21(2): 145-150.
14. Hinds PS, Pritchard M, Harper J. End-of-life research as a priority for pediatric oncology. J Pediatr Oncol Nurs 2004; 21(3): 175-179.
15. Ashby MA, Kosky RJ, Laver HT, Sims EB. An enquiry into death and dying at the Adelaide Children's Hospital: A useful model? Med J Aust. 1991; 154(3): 165-170.
16. nd edition. Oxford, UK: Oxford University Press; 1998, pp. 1077-1084.
17. Goldman A. Home care of the dying child. J Palliat Care 1996; 12(3): 16-19.
18. Widger K, Davies D, Drouin DJ, Beaune L, Daoust L, Farran RP, et al. Pediatric patients receiving palliative care in Canada: results of a multicenter review. Arch Pediatr Adolesc Med 2007; 161(6): 597-602.
19. Campbell SM, Braspenning J, Hutchinson A, Marshall MN. Research methods used in developing and applying quality indicators in primary care. Brit Med J 2003; 326(7393): 816-819.
20. Gordon TJ. The Delphi Method. 1994. Available at: http://www. futurovenezuela.org/-curso/5-delphi.pdf Accessed March 26, 2007.
21. Annells M, Deroche M, Koch T, Lewin G, Lucke J. A Delphi study of district nursing research priorities in Australia. Appl Nurs Res 2005; 18(1): 36-43.
22. Hermens RP, Ouwens MM, Vonk-Okhuijsen SY, van der Wei Y, Tjan-Heijnen VC, van den Broek LD, et al. Development of quality indicators for diagnosis and treatment of patients with non-small cell lung cancer: a first step toward implementing a multidisciplinary, evidence- based guideline. Lung Cancer 2006; 54(1): 117-124.
23. Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs 2000; 32(4): 1008-1015.
24. Powell C. The Delphi technique: myths and realities. J Adv Nurs 2003; 41(4): 376-382.
25. Steele R, Davies B. Impact on parents when a child has a progressive, life-threatening illness. Int J Palliat Nurs 2006; 12(12): 576-585.
26. Hays RM, Valentine J, Haynes G, Geyer JR, Villareale N, McKinstry B, 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.
27. 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(1): 435-440.
28. Gregoire MC, Frager G. Ensuring pain relief for children at the end of life. Pain Res Manag 2006; 11(3): 163-171.
29. Hooke MC, Grund E, Quammen H, Miller B, McCormick P, Bostrom B. Propofol use in pediatric patients with severe cancer pain at the end of life. J Pediatr Oncol Nurs 2007; 24(1): 29-34.
30. Goldman A, Hewitt M, Collins GS, Childs M, Hain R. Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics 2006; 117(6): e1179-e1186.
31. Poltorak DY, Benore E. Cognitive-behavioral interventions for physical symptom management in pediatric palliative medicine. Child Adolesc Psychiatr Clin N Am 2006; 15(3): 683-691.
32. Stuber ML, Shemesh E. Post-traumatic stress response to life-threatening illnesses in children and their parents. Child Adolesc Psychiatr Clin N Am 2006; 15(3): 597-609.
33. deJong-Berg MA, Kane L. Bereavement care for families. Part 2: Evaluation of a paediatric follow-up programme. Int J Palliat Nurs 2006; 12(10): 484-494.
34. deCinque N, Monterosso L, Dadd G, Sidhu R, Macpherson R, Aoun S. Bereavement support for families following the death of a child from cancer: experience of bereaved parents. J Psychosoc Oncol 2006; 24(2): 65-83.
35. Hinds PS, Schum L, Baker JN, Wolfe J. Key factors affecting dying children and their families. J Palliat Med 2005; 8 (suppl 1): S70-S78.
36. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342(5): 326-333.
37. Hinds PS, Burghen EA, Pritchard M. Conducting end-of-life studies in pediatric oncology. West J Nurs Res 2007; 29(4): 448-465.
38. Houlahan KE, Branowicki PA, Mack JW, Dinning C, McCabe M. Can end of life care for the pediatric patient suffering with escalating and intractable symptoms be improved? J Pediatr Oncol Nurs 2006; 23(1): 45-51.
39. Rushton CH, Reder E, Hall B, Comello K, Sellers DE, Hutton N. Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. J Palliat Med 2006; 9(4): 922-933.
40. 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.
41. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care [comment]. Arch Pediatr Adolesc Med 2002; 156(1): 14-19.
42. 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.
43. Kreicbergs U, Valdimarsdottir U, Steineck G, Henter Jl. A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer. Lancet 2004; 364(9436): 787-789.
44. Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med 2002; 30(1): 226-231.
45. Tomlinson D, Capra M, Gammon J, Volpe J, Barrera M, Hinds PS, et al. Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input. Eur J Oncol Nurs 2006; 10(3): 198-206.
46. 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.
47. Steele R. Strategies used by families to navigate uncharted territory when a child is dying. J Palliat Care 2005; 21(2): 103-110.
48. Soanes L, Gibson F, Bayliss J, Hannan J. Establishing nursing research priorities on a paediatric haematology, oncology, immunology and infectious diseases unit: a Delphi Survey. Eur J Oncol Nurs 2000; 4(2): 108-117.
49. Soanes L, Gibson F, Hannan J, Bayliss J. Establishing nursing research priorities on a paediatric haematology, oncology, immunology and infectious diseases unit: involving doctors and parents. Eur J Oncol Nurs 2003; 7(2): 110-119.