Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider perspectives. Engagement in decision-making against the backdrop of normative developmental processes of acquiring autonomy and gaining independence contributes to the complexity of decision-making. Semi-structured qualitative interviews from 11 AYA and caregiver dyads and eight oncology providers examined decision-making processes with specific attention to the role of shared decision-making, cognitive and emotional processes, and coping with the decision-making experience. Five decision-making patterns were identified, with collaborative decision-making and AYA-driven decisions most commonly described. Utilizing hypothesis coding, AYA and caregivers explained how cognitive (i.e., pros/cons) and emotional (i.e., shock and fear of missing out) processes influenced cancer-related decisions. Coping strategies provided clarity and respite when engaged in decision-making. Our findings illuminate important implications for how to best support decision-making among AYA and caregivers, including the role oncology providers can play during decision-making.
BarakatL. P.SchwartzL. A.ReillyA.DeatrickJ. A.BalisF. (2014). A qualitative study of phase III cancer clinical trial enrollment decision-making: Perspectives from adolescents, young adults, caregivers, and providers. Journal of Adolescent and Young Adult Oncology, 3(1), 3–11. https://doi.org/10.1089/jayao.2013.0011
2.
BlascovichJ. (2008). Challenge, threat, and health. In ShahJ. Y.GardnerW. L. (Eds.), Handbook of motivation science (pp. 481–493). The Guilford Press.
3.
DayE.JonesL.LangnerR.StirlingL. C.HoughR.Bluebond-LangnerM. (2018). “We just follow the patients’ lead”: Healthcare professional perspectives on the involvement of teenagers with cancer in decision making. Pediatric Blood & Cancer, 65(3), Article e26898. https://doi.org/10.1002/pbc.26898
4.
FerrerR. A.GreenP. A.BarrettL. F. (2015). Affective science perspectives on cancer control: Strategically crafting a mutually beneficial research agenda. Perspectives on Psychological Science, 10(3), 328–345. https://doi.org/10.1177/1745691615576755
HartR. I.CameronD. A.CowieF. J.HardenJ.HeaneyN. B.RankinD.JesudasonA. B.LawtonJ. (2020). The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: A qualitative study involving adolescents and young adults with cancer and their caregivers. BMC Health Services Research, 20(1), Article 25. https://doi.org/10.1186/s12913-019-4851-1
7.
HeadK. J.IannarinoN. T. (2019). “It changed our outlook on how we want to live”: Cancer as a transformative health experience for young adult survivors and their family members. Qualitative Health Research, 29(3), 404–417. https://doi.org/10.1177/1049732318800674
8.
IlowiteM. F.CroninA. M.KangT. I.MackJ. W. (2017). Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity. Cancer, 123(20), 3995–4003. https://doi.org/10.1002/cncr.30960
9.
KellyK. P.GanongL. (2011). Moving to place: Childhood cancer treatment decision making in single-parent and repartnered family structures. Qualitative Health Research, 21(3), 349–364. https://doi.org/10.1177/1049732310385823
10.
KyngäsH.MikkonenR.NousiainenE. M.RytilahtiM.SeppänenP.VaattovaaraR.JämsäT. (2001). Coping with the onset of cancer: Coping strategies and resources of young people with cancer. European Journal of Cancer Care, 10(1), 6–11. https://doi.org/10.1046/j.1365-2354.2001.00243.x
11.
LeventhalH. (1970). Findings and theory in the study of fear communications. In BerkowitzL. (Ed.), Advances in experimental social psychology (Vol. 5, pp. 119–186). Academic Press. https://doi.org/10.1016/S0065-2601(08)60091-X
12.
LeventhalH.DiefenbachM.LeventhalE. A. (1992). Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cognitive Therapy and Research, 16(2), 143–163. https://doi.org/10.1007/BF01173486
13.
MackJ. W.FascianoK. M.BlockS. D. (2019). Adolescent and young adult cancer patients’ experiences with treatment decision-making. Pediatrics, 143(5), Article e20182800. https://doi.org/10.1542/peds.2018-2800
14.
MakoulG.ClaymanM. L. (2006). An integrative model of shared decision making in medical encounters. Patient Education and Counseling, 60(3), 301–312. https://doi.org/10.1016/j.pec.2005.06.010
15.
MazzoccoK.MasieroM.CarrieroM. C.PravettoniG. (2019). The role of emotions in cancer patients’ decision-making. eCancermedicalscience, 13, 914–914. https://doi.org/10.3332/ecancer.2019.914
16.
MianoS. J.DouglasS. L.HickmanR. L.DiMarcoM.PicconeC.DalyB. J. (2020). Exploration of decisional control preferences in adolescents and young adults with cancer and other complex medical conditions. Journal of Adolescent and Young Adult Oncology, 9(4), 464–471. https://doi.org/10.1089/jayao.2019.0135
17.
MiedemaB.HamiltonR.FortinP.EasleyJ.MatthewsM. (2010). “You can only take so much, and it took everything out of me”: Coping strategies used by parents of children with cancer. Palliative and Supportive Care, 8(2), 197–206. https://doi.org/10.1017/S1478951510000015
18.
NahataL.AnazodoA.ChervenB.LoganS.MeachamL. R.MeadeC. D.Zarnegar-LumleyS.QuinnG. P. (2020). Optimizing health literacy to facilitate reproductive health decision-making in adolescent and young adults with cancer. Pediatric Blood & Cancer, Article e28476. Advance online publication. https://doi.org/10.1002/pbc.28476
19.
PowerT. E.SwartzmanL. C.RobinsonJ. W. (2011). Cognitive-emotional decision making (CEDM): A framework of patient medical decision making. Patient Education and Counseling, 83(2), 163–169. https://doi.org/10.1016/j.pec.2010.05.021
20.
PratherA. A. (2016). Neuroendocrine and neuroimmunological mechanisms of emotion. In BarrettL. F.LewisM.Haviland-JonesJ. M. (Eds.), Handbook of emotions (4th ed., pp. 634–652). Guilford Press.
21.
Pyke-GrimmK. A.FranckL. S.Patterson KellyK.Halpern-FelsherB.GoldsbyR. E.KleimanA.RehmR. S. (2019). Treatment decision-making involvement in adolescents and young adults with cancer. Oncology Nursing Forum, 46(1), E22–E37. https://doi.org/10.1188/19.ONF.E22-E37
22.
Pyke-GrimmK. A.SchulzG. L.PearsonH.KellyK. P. (2020). Treatment decision making. In HindsP. S.LinderL. (Eds.), Pediatric oncology nursing: Defining care through science (pp. 169–190). Springer International Publishing. https://doi.org/10.1007/978-3-030-25804-7_10
23.
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
24.
RussellJ. A. (1980). A circumplex model of affect. Journal of Personality and Social Psychology, 39(6), 1161–1178. https://doi.org/10.1037/h0077714
25.
SaldañaJ. (2013). The coding manual for qualitative researchers. SAGE.
26.
SiskB. A.FriedrichA.BlazinL. J.BakerJ. N.MackJ. W.DuBoisJ. (2020). Communication in Pediatric Oncology: A qualitative study. Pediatrics, 146(3), Article e20201193. https://doi.org/10.1542/peds.2020-1193
27.
SiskB. A.SchulzG. L.BlazinL. J.BakerJ. N.MackJ. W.DuBoisJ. M. (2021). Parental views on communication between children and clinicians in pediatric oncology: A qualitative study. Supportive Care in Cancer, 29, 4957–4968. https://doi.org/10.1007/s00520-021-06047-6
28.
SnethenJ. A.BroomeM. E.KnaflK.DeatrickJ. A.AngstD. B. (2006). Family patterns of decision-making in pediatric clinical trials. Research in Nursing & Health, 29(3), 223–232. https://doi.org/10.1002/nur.20130
29.
StinsonJ.SungL.GuptaA.WhiteM.JibbL.DettmerE.BakerN. (2012). Disease self-management needs of adolescents with cancer: Perspectives of adolescents with cancer and their parents and healthcare providers. Journal of Cancer Survivorship, 6(3), 278–286. https://doi.org/10.1007/s11764-012-0222-1
30.
TindleD.WindsorC.YatesP. (2019). Centralizing temporality in adolescent and young adult cancer survivorship. Qualitative Health Research, 29(2), 173–183. https://doi.org/10.1177/1049732318797087
31.
TreffersT.PutoraP. M. (2020). Emotions as social information in shared decision-making in Oncology. Oncology, 98(6), 430–437. https://doi.org/10.1159/000505341
32.
WellerS. C.VickersB.Russell BernardH.BlackburnA. M.BorgattiS.GravleeC. C.JohnsonJ. C. (2018). Open-ended interview questions and saturation. PloS One, 13(6), e0198606. https://doi.org/10.1371/journal.pone.0198606
33.
ZafarS. Y.AlexanderS. C.WeinfurtK. P.SchulmanK. A.AbernethyA. P. (2009). Decision making and quality of life in the treatment of cancer: A review. Supportive Care in Cancer, 17(2), 117–127. https://doi.org/10.1007/s00520-008-0505-2
34.
ZebrackB.ButlerM. (2012). Context for understanding psychosocial outcomes and behavior among adolescents and young adults with cancer. Journal of the National Comprehensive Cancer Network, 10(9), 1151–1156. https://doi.org/10.6004/jnccn.2012.0118
35.
Zikmund-FisherB. J.FagerlinA.UbelP. A. (2010). Risky feelings: Why a 6% risk of cancer does not always feel like 6%. Patient Education and Counseling, 81(Suppl. 1), S87–S93. https://doi.org/10.1016/j.pec.2010.07.041
36.
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(1), Article 35. https://doi.org/10.1186/1471-2431-7-35
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