Background: Recently, awareness of children’s decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making process of children with cancer regarding their care, treatment, and support from family and health care professionals, and identified their needs and preferences. Design: We used metaethnography to conduct a metasynthesis of relevant studies. Data sources: We searched PubMed, EMBASE, PsycINFO, MEDLINE, and CINAHL. This report was prepared in accordance with the PRISMA statement. Results: Of the 7,237 retrieved studies, 27 met our inclusion criteria. Four themes emerged that reflected the decision-making process of children with cancer: (a) facing changes brought about by a health threat, (b) preparing for action, (c) asserting one’s choice, and (d) internal and external influences. Conclusion: Children with cancer initially undergo a decision-making process. Respecting children’s preferences, values, and emotions may help build trusting relationships and promote their decision-making capability. Future research should focus on children’s emotions, cognition, development, and interactions with parents and health care professionals.
BolandL.GrahamI. D.LégaréF.LewisK.JullJ.ShephardA.LawsonM. L.DavisA.YameogoA.StaceyD. (2019). Barriers and facilitators of pediatric shared decision-making: A systematic review. BMC Implementation Science, 14(7), 1-25. https://doi.org/10.1186/s13012-018-0851-5
3.
BrandS. R.FascianoK.MackJ. W. (2017). Communication preferences of pediatric cancer patients: Talking about prognosis and their future life. Supportive Care in Cancer, 25(3), 769-774. https://doi.org/10.1007/s00520-016-3458-x
4.
BrittenN.CampbellR.PopeC.DonovanJ.MorganM.PillR. (2002). Using meta ethnography to synthesise qualitative research: A worked example. Journal of Health Services Research & Policy, 7(4), 209-215. https://doi.org/10.1258/135581902320432732
5.
BroomeM. E.RichardsD. J. (2003). The influence of relationships on children’s and adolescents’ participation in research. Nursing Research, 52(3), 191-197. https://doi.org/10.1097/00006199-200305000-00009
CarterB.FordK. (2013). Researching children’s health experiences: The place for participatory, child-centered, arts-based approaches. Research in Nursing & Health, 36(1), 95-107. https://doi.org/10.1002/nur.21517
9.
CataudellaD. A.ZelcerS. (2012). Psychological experiences of children with brain tumors at end of life: Parental perspectives. Journal of Palliative Medicine, 15(11), 1191-1197. https://doi.org/10.1089/jpm.2011.0479
10.
ClarkeS. A.DaviesH.JenneyM.GlaserA.EiserC. (2005). Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncology, 14(4), 274-281. https://doi.org/10.1002/pon.843
CoyneI.AmoryA.GibsonF.KiernanG. (2016). Information-sharing between healthcare professionals, parents and children with cancer: More than a matter of information exchange. European Journal of Cancer Care, 25(1), 141-156. https://doi.org/10.1111/ecc.12411
14.
CoyneI.AmoryA.KiernanG.GibsonF. (2014). Children’s participation in shared decision-making: Children, adolescents, parents and healthcare professionals’ perspectives and experiences. European Journal of Oncology Nursing, 18(3), 273-280. https://doi.org/10.1016/j.ejon.2014.01.006
15.
CoyneI.GallagherP. (2011). Participation in communication and decision-making: Children and young people’s experiences in a hospital setting. Journal of Clinical Nursing, 20(15-16), 2334-2343. https://doi.org/10.1111/j.1365-2702.2010.03582.x
DayE.JonesL.LangnerR.Bluebond-LangnerM. (2016). Current understanding of decision-making in adolescents with cancer: A narrative systematic review. Palliative Medicine, 30(10), 920-934. https://doi.org/10.1177/0269216316648072
18.
De ClercqE.ElgerB. S.WangmoT. (2017). Missing life stories: The narratives of palliative patients, parents and physicians in paediatric oncology. European Journal of Cancer Care, 26(6), Article e12651. https://doi.org/10.1111/ecc.12651
de VriesM. C.BrestersD.EngbertsD. P.WitJ. M.Van LeeuwenE. (2009). Attitudes of physicians and parents towards discussing infertility risks and semen cryopreservation with male adolescents diagnosed with cancer. Pediatric Blood & Cancer, 53(3), 386-391. https://doi.org/10.1002/pbc.22091
21.
de VriesM. C.BrestersD.KaspersG. J. L.HoutlosserM.WitJ. M.EngbertsD. P.van LeeuwenE. (2013). What constitutes the best interest of a child? Views of parents, children, and physicians in a pediatric oncology setting. AJOB Primary Research, 4(2), 1-10. http://dx.doi.org/10.1080/21507716.2012.757254
EngvallG.Angstrom-BrannstromC.MullaneyT.NilssonK.Wickart-JohanssonG.SvardA. M.NyholmT.LindhJ.LindhV. (2016). It is tough and tiring but it works: Children’s experiences of undergoing radiotherapy. PLOS ONE, 11(4), e0153029. https://doi.org/10.1371/journal.pone.0153029
24.
GibsonF.AldissS.HorstmanM.KumpunenS.RichardsonA. (2010). Children and young people’s experiences of cancer care: A qualitative research study using participatory methods. International Journal of Nursing Studies, 47(11), 1397-1407. https://doi.org/10.1016/j.ijnurstu.2010.03.019
25.
HigginsJ. P. T.LassersonT.ChandlerJ.ToveyD.ChurchillR. (2016). Methodological expectations of Cochrane intervention reviews. Cochrane.
26.
HindsP. S.DrewD.OakesL. L.FouladiM.SpuntS. L.ChurchC.FurmanW. L. (2005). End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology, 23(36), 9146-9154. https://doi.org/10.1200/JCO.2005.10.538
27.
HokkanenH.ErikssonE.AhonenO.SalanteraS. (2004). Adolescents with cancer: Experience of life and how it could be made easier. Cancer Nursing, 27(4), 325-335. https://doi.org/10.1097/00002820-200407000-00010
28.
IngersgaardM. V.TulstrupM.SchmiegelowK.BaekgaardL. H. (2017). A qualitative study of decision-making on phase iii randomized clinical trial participation in pediatric oncology: Adolescents’ and parents’ perspectives and preferences. Journal of Advance Nursing, 74(1), 110-118. https://doi.org/10.1111/jan.13407
JalmsellL.KontioT.SteinM.HenterJ. I.KreicbergsU. (2015). On the child’s own initiative: Parents communicate with their dying child about death. Death Studies, 39(1-5), 111-117. https://doi.org/10.1080/07481187.2014.913086
31.
JalmsellL.LovgrenM.KreicbergsU.HenterJ. I.FrostB. M. (2016). Children with cancer share their views: Tell the truth but leave room for hope. Acta Paediatrica, 105(9), 1094-1099. https://doi.org/10.1111/apa.13496
32.
KellyK. P.MowbrayC.Pyke-GrimmK.HindsP. S. (2017). Identifying a conceptual shift in child and adolescent-reported treatment decision making: “Having a say, as I need at this time.”Pediatric Blood & Cancer, 64(4) Article e26262. https://doi.org/10.1002/pbc.26262
33.
KozlowskiD.HutchinsonM.HurleyJ.RowleyJ.SutherlandJ. (2017). The role of emotion in clinical decision making: An integrative literature review. BMC Medical Education, 17(1), Article 255. https://doi.org/10.1186/s12909-017-1089-7
34.
KryshtafovychA.MonastyrskyyB.FidelisK. (2014). CASP prediction center infrastructure and evaluation measures in CASP10 and CASP ROLL. Proteins: Structure, Function, and Bioinformatics, 82(52), 7-13. https://doi.org/10.1002/prot.24399
35.
KuoD. Z.HoutrowA. J.ArangoP.KuhlthauK. A.SimmonsJ. M.NeffJ. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297-305. https://doi.org/10.1007/s10995-011-0751-7
36.
LefebvreC. M. E.GlanvillJ. (2011). Searching for studies. In HigginsJ. P. T.GreenS. (Eds.), Cochrane handbook for systematic reviews of interventions (Version 5.1.0, chap. 6). Cochrane.
37.
LipsteinE. A.BrinkmanW. B.FiksA. G.HendrixK. S.KryworuchkoJ.MillerV. A.ProsserL. A.UngarW. J.FoxD. (2015). An emerging field of research: Challenges in pediatric decision making. Medical Decision Making, 35(3), 403-408. https://doi.org/10.1177/0272989X14546901
38.
MajamandaM. D.MunkhondyaT. E. M.SimbotaM.ChikalipM. (2015). Family centered care versus child centered care. Health, 7(6), 741-746. https://doi.org/10.4236/health.2015.76088
39.
McGowanJ.SampsonM.SalzwedelD. M.CogoE.FoersterV.LefebvreC. (2016). PRESS peer review of electronic search strategies: 2015 Guideline statement. Journal of Clinical Epidemiology, 75, 40-46. https://doi.org/10.1016/j.jclinepi.2016.01.021
40.
MichelsonK. N.SteinhornD. M. (2007). Pediatric end-of-life issues and palliative care. Clinical Pediatric Emergency Medicine, 8(3), 212-219. https://doi.org/10.1016/j.cpem.2007.06.006
41.
MillerV. A.BakerJ. N.LeekA. C.HizlanS.RheingoldS. R.YamokoskiA. D.DrotarD.KodishE. (2013). Adolescent perspectives on Phase I cancer research. Pediatric Blood & Cancer, 60(5), 873-878. https://doi.org/10.1002/pbc.24326
42.
MoherD.LiberatiA.TetzlaffJ.AltmanD. G.GroupP. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), Article e1000097. https://doi.org/10.1371/journal.pmed.1000097
43.
National Institute for Health and Care Excellence. (2005). Improving outcomes in children and young people with cancer: The manual. Author. https://www.nice.org.uk/guidance/csg7
NovaC.VegniE.MojaE. A. (2005). The physician-patient-parent communication: A qualitative perspective on the child’s contribution. Patient Education and Counseling, 58(3), 327-333. https://doi.org/10.1016/j.pec.2005.02.007
46.
OlechnowiczJ. Q.EderM.SimonC.ZyzanskiS.KodishE. (2002). Assent observed: Children’s involvement in leukemia treatment and research discussions. Pediatrics, 109(5), 806-814. https://doi.org/10.1542/peds.109.5.806
47.
ParkE. S.ChoI. Y. (2017). Shared decision-making in the paediatric field: a literature review and concept analysis. Scandinavian Journal Caring Science, 32(2), 478-489.http://doi/10.1111/scs.12496
48.
ReynaV. F.NelsonW. L.HanP. K.PignoneM. P. (2015). Decision making and cancer. American Psychologist, 70(2), 105-118. https://doi.org/10.1037/a0036834
49.
RuheK. M.BadarauD. O.BrazzolaP.HengartnerH.ElgerB. S.WangmoT. (2015). Participation in pediatric oncology: Views of child and adolescent patients. Psycho Oncology, 25(9), 1036-1042. https://doi.org/10.1002/pon.4053
50.
RuheK. M.WangmoT.De ClercqE.BadarauD. O.AnsariM.KuhneT.NiggliF.ElgerB. S.AngstR.PopovicM. B.BrazzolaP.HengartnerH.RischewskiJ. (2016). Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology. European Journal of Pediatrics, 175(9), 1147-1155. https://doi.org/10.1007/s00431-016-2754-2
51.
RunesonI.MartensonE.EnskarK. (2007). Children’s knowledge and degree of participation in decision making when undergoing a clinical diagnostic procedure. Pediatric Nursing, 33(6), 505-511.
52.
SalterE. K. (2012). Deciding for a child: A comprehensive analysis of the best interest standard. Theory of Medicine and Bioethics, 33(3), 179-198. https://doi.org/10.1007/s11017-012-9219-z
53.
SimonH. A. (1959). Theories of decision-making in economics and behavioral science. American Economic Review, 49(3), 253-283.
54.
SimonH. A. (1979). Rational decision making in business organizations. American Economic Review, 69(4), 493-513.
SmithL. K.PopeC.BothaJ. L. (2005). Patients’ help-seeking experiences and delay in cancer presentation: A qualitative synthesis. Lancet, 366(9488), 825-831. https://doi.org/10.1016/s0140-6736(05)67030-4
57.
StegengaK.Ward-SmithP. (2008). The adolescent perspective on participation in treatment decision making: A pilot study. Journal of Pediatric Oncology Nursing, 25(2), 112-117. https://doi.org/10.1177/1043454208314515
58.
SteinbergL. (2002). Clinical adolescent psychology: What it is, and what it needs to be. Journal of Consulting and Clinical Psychology, 70(1), 124-128. https://doi.org/10.1037/0022-006X.70.1.124
59.
TennigloL. J. A.LoeffenE. A. H.KremerL. C. M.Font-GonzalezA.MulderR. L.PostmaA.Naafs-WilstraM. C.GrootenhuisM. A.van de WeteringM. D.TissingW. J. E. (2017). Patients’ and parents’ views regarding supportive care in childhood cancer. Support Care Cancer, 25(10), 3151-3160. https://doi.org/10.1007/s00520-017-3723-7
60.
WeaverM. S.BakerJ. N.GattusoJ. S.GibsonD. V.SykesA. D.HindsP. S. (2015). Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer, 121(24), 4416-4424. https://doi.org/10.1002/cncr.29663
61.
WeaverM. S.HeinzeK. E.BellC. J.WienerL.GareeA. M.KellyK. P.CaseyR. L.Anne WatsonA.HindsP. S. (2016). Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliative Medicine, 30(3), 212-223. https://doi.org/10.1177/0269216315583446
62.
WeeksL.BalneavesL. G.PatersonC.VerhoefM. (2014). Decision-making about complementary and alternative medicine by cancer patients: Integrative literature review. Open Medicine, 8(2), e54-e66.
63.
ZwaanswijkM.TatesK.van DulmenS.HoogerbruggeP. M.KampsW. A.BensingJ. M. (2007). Young patients’, parents’, and survivors’ communication preferences in paediatric oncology: Results of online focus groups. BMC Pediatrics, 7, Article 35. https://doi.org/10.1186/1471-2431-7-35
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
