Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care.
Objectives
The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinent lines of research.
Method
A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada.
Results
Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life?
Conclusions
These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
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.
MackJW, WolfeJ.Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Curr Opin Pediatr2006; 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.
LentonS, StallardP, LewisM, MastroyannopoulouK.Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood. Child Care Health Dev2001;27(5):389–398.
7.
CooleyC, AdeoduS, AldredH, BeesleyS, LeungA, ThackerL.Paediatric palliative care: a lack of research-based evidence. Int J Palliat Nurs2000;6(7):346–351.
8.
American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care.Palliative care for children. Pediatrics2000; 106(2 Pt 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.
PritchardM, DaviesB.End of life in pediatric oncology: How clinical practice leads to research. J Pediatr Oncol Nurs2002; 19 (6):191–197.
11.
HuntA, HainR, JassalS, ThompsonA.Pediatric palliative care: Where and what is published?Arch Dis Child2003; 88(suppl 1): A61–A63.
12.
HuttonN.Pediatric palliative care: The time has come. Arch Pediatr Adolesc Med2002; 156 (1):9–10.
13.
HareML. Comparing research priorities for pediatric oncology from two panels of experts. Semin Oncol Nurs2005; 21 (2):145–150.
14.
HindsPS, PritchardM, HarperJ.End-of-life research as a priority for pediatric oncology. J Pediatr Oncol Nurs2004; 21 (3):175–179.
15.
AshbyMA, KoskyRJ, LaverHT, SimsEB. An enquiry into death and dying at the Adelaide Children's Hospital: A useful model?Med J Aust. 1991; 154 (3):165–170.
16.
DaviesB, HowellD.Special services for children. In: DoyleD, HanksG, MacDonaldN (eds). Oxford Textbook of Palliative Medicine. 2nd edition. Oxford, UK: Oxford University Press; 1998, pp. 1077–1084.
17.
GoldmanA.Home care of the dying child. J Palliat Care1996; 12 (3):16–19.
18.
WidgerK, DaviesD, DrouinDJ, BeauneL, DaoustL, FarranRP, . Pediatric patients receiving palliative care in Canada: results of a multicenter review. Arch Pediatr Adolesc Med2007; 161 (6):597–602.
19.
CampbellSM, BraspenningJ, HutchinsonA, MarshallMN. Research methods used in developing and applying quality indicators in primary care. Brit Med J2003; 326 (7393):816–819.
AnnellsM, DerocheM, KochT, LewinG, LuckeJ.A Delphi study of district nursing research priorities in Australia. Appl Nurs Res2005; 18 (1):36–43.
22.
HermensRP, OuwensMM, Vonk-OkhuijsenSY, van der WelY, Tjan-HeijnenVC, van den BroekLD, . 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 Cancer2006; 54 (1):117–124.
23.
HassonF, KeeneyS, McKennaH.Research guidelines for the Delphi survey technique. J Adv Nurs2000; 32 (4):1008–1015.
SteeleR, DaviesB.Impact on parents when a child has a progressive, life-threatening illness. Int J Palliat Nurs2006; 12 (12):576–585.
26.
HaysRM, ValentineJ, HaynesG, GeyerJR, VillarealeN, McKinstryB, . The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J Palliat Med2006; 9 (3):716–728.
27.
TomlinsonD, BartelsU, HendershotE, ConstantinJ, WrathallG, SungL.Challenges to participation in paediatric palliative care research: a review of the literature. Palliat Med2007; 21 (1):435–440.
28.
GregoireMC, FragerG.Ensuring pain relief for children at the end of life. Pain Res Manag2006;11(3):163–171.
29.
HookeMC, GrundE, QuammenH, MillerB, McCormickP, BostromB.Propofol use in pediatric patients with severe cancer pain at the end of life. J Pediatr Oncol Nurs2007; 24 (1):29–54.
30.
GoldmanA, HewittM, CollinsGS, ChildsM, HainR.Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics2006; 117(6): e1179–e1186.
31.
PoltorakDY, BenoreE.Cognitive-behavioral interventions for physical symptom management in pediatric palliative medicine. Child Adolesc Psychiatr Clin N Am2006; 15 (3):683–691.
32.
StuberML, ShemeshE.Post-traumatic stress response to life-threatening illnesses in children and their parents. Child Adolesc Psychiatr Clin N Am2006; 15 (3):597–609.
33.
deJong-BergMA, KaneL.Bereavement care for families. Part 2: Evaluation of a paediatric follow-up programme. Int J Palliat Nurs2006; 12 (10):484–494.
34.
deCinqueN, MonterossoL, DaddG, SidhuR, MacphersonR, AounS.Bereavement support for families following the death of a child from cancer: experience of bereaved parents. J Psychosoc Oncol2006; 24 (2):65–83.
35.
HindsPS, SchumL, BakerJN, WolfeJ.Key factors affecting dying children and their families. J Palliat Med2005; 8 (suppl 1): S70–S78.
36.
WolfeJ, GrierHE, KlarN, LevinSB, EllenbogenJM, Salem-SchatzS, . Symptoms and suffering at the end of life in children with cancer. N Engl J Med2000; 342 (5):326–333.
37.
HindsPS, BurghenEA, PritchardM.Conducting end-of-life studies in pediatric oncology. West J Nurs Res2007; 29 (4):448–465.
38.
HoulahanKE, BranowickiPA, MackJW, DinningC, McCabeM.Can end of life care for the pediatric patient suffering with escalating and intractable symptoms be improved?J Pediatr Oncol Nurs2006; 23 (1):45–51.
39.
RushtonCH, RederE, HallB, ComelloK, SellersDE, HuttonN.Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. J Palliat Med2006; 9 (4):922–933.
40.
KaneJR, HellstenMB, ColdsmithA.Human suffering: the need for relationship-based research in pediatric end-of-life care. J Pediatr Oncol Nurs2004; 21 (3):180–185.
41.
ControN, LarsonJ, ScofieldS, SourkesB, CohenH.Family perspectives on the quality of pediatric palliative care [comment]. Arch Pediatr Adolesc Med2002; 156 (1):14–19.
42.
HynsonJL, AroniR, BauldC, SawyerSM. Research with bereaved parents: A question of how not why. Palliat Med2006; 20 (8):805–811.
43.
KreicbergsU, ValdimarsdottirU, SteineckG, HenterJI. A population-based nationwide study of parents’ perceptions of a questionnaire on their child's death due to cancer. Lancet2004; 364 (9436):787–789.
44.
MeyerEC, BurnsJP, GriffithJL, TruogRD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med2002; 30 (1):226–231.
45.
TomlinsonD, CapraM, GammonJ, VolpeJ, BarreraM, HindsPS, . 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 Nurs2006; 10 (3):198–206.
46.
WoodgateRL. Living in a world without closure: reality for parents who have experienced the death of a child. J Palliat Care2006; 22 (2):75–82.
47.
SteeleR.Strategies used by families to navigate uncharted territory when a child is dying. J Palliat Care2005; 21 (2):103–110.
48.
SoanesL, GibsonF, BaylissJ, HannanJ.Establishing nursing research priorities on a paediatric haematology, oncology, immunology and infectious diseases unit: a Delphi Survey. Eur J Oncol Nurs2000; 4 (2):108–117.
49.
SoanesL, GibsonF, HannanJ, BaylissJ.Establishing nursing research priorities on a paediatric haematology, oncology, immunology and infectious diseases unit: involving doctors and parents. Eur J Oncol Nurs2003;7(2):110–119.
