Parental cancer disrupts family dynamics. Children who have parents suffering from cancer may suffer from caregiver burden syndrome, including physical and psychological symptoms. Few support programs are available for them. In France, these programs are mainly discussion groups.
Methods
The aim of this work was to elaborate a support program for young minor caregivers. The first step was to conduct a systematic literature review, followed by the Delphi method to reach a consensus.
Results
26 articles were retrieved during the literature review step. 57 items were identified. Two questionnaires (one for children and one for teenagers) were sent by email to 14 experts, working as general practitioners, oncologists, psychologists, or pediatric nurses. After four rounds, experts reached a consensus for each question. Items were evaluated by a yes-no scale. The consensus was validated if a question obtained over 70% of votes. The number, length and content of the sessions, and the healthcare professionals required for their organization were determined by consensus.
Discussion
The next step will be to implement support programs based on this method and test them in real life to evaluate their impact.
Plain Language Summary
Parental cancer disrupts family routine. Children and teeanager may suffer from anxiety, sleep disorders or parentification. After having achieved a systematic review of literture, we built two programs with experts, to help children and teenagers living with a parent suffering from a cancer.
AdamV.KitzmannR.RiosM.PegliascoC.OlivierJ.-B.RaftJ. (2013). Évaluation d’un groupe de soutien aux enfants de parents atteints de cancer après 4 années d’expérience. Bulletin du cancer, 100(3), 237–245. https://doi.org/10.1684/bdc.2013.1712
2.
AlexanderE.O’ConnorM.ReesC.HalkettG. (2019). A systematic review of the current interventions available to support children living with parental cancer. Patient Education and Counseling, 102(10), 1812–1821. https://doi.org/10.1016/j.pec.2019.05.001
3.
AntoniS.SoerjomataramI.MøllerB.BrayF.FerlayJ. (2016). An assessment of GLOBOCAN methods for deriving national estimates of cancer incidence. Bulletin of the World Health Organization, 94(3), 174–184. https://doi.org/10.2471/BLT.15.164384
4.
AzarbarzinM.MalekianA.TaleghaniF. (2016). Adolescents’ experiences when living with a parent with cancer: A qualitative study. Iranian Red Crescent Medical Journal, 18(1), Article e26410. https://doi.org/10.5812/ircmj.26410
BourréeF.MichelP.SalmiL. R. (2008). Consensus methods: Review of original methods and their main alternatives used in public health. Revue D’Epidemiologie et De Sante Publique, 56(6), 415–423. https://doi.org/10.1016/j.respe.2008.09.006
7.
BuggeK. E.HelsethS.DarbyshireP. (2008). Children’s experiences of participation in a family support program when their parent has incurable cancer. Cancer Nursing, 31(6), 426–434. https://doi.org/10.1097/01.NCC.0000339250.83571.b0
8.
BultmannJ. C.BeierleinV.RomerG.MöllerB.KochU.BergeltC. (2014). Parental cancer: Health-related quality of life and current psychosocial support needs of cancer survivors and their children. International Journal of Cancer, 135(11), 2668–2677. https://doi.org/10.1002/ijc.28905
9.
BuyseS.Al-SalehiL.LaethemJ.-L. V.KentosA.LuceS.MekindaZ.EnaG.RoumeguèreT.DemolsA.SokolowY.SimonP.BaillyB.MarchandM.GaspardB. (2012). L’espace enfants/adolescents, un lieu d’accueil pour les enfants et les adolescents dont un parent est atteint d’un cancer children’s/teenagers’ corner: For children and teenagers with a parent affected by cancer. Psycho-Oncologie, 6(4), 246–252. https://doi.org/10.1007/s11839-012-0389-8
ChalmersK. I.KristjansonL. J.WoodgateR.Taylor-BrownJ.NelsonF.RamserranS.DudgeonD. (2000). Perceptions of the role of the school in providing information and support to adolescent children of women with breast cancer. Journal of Advanced Nursing, 31(6), 1430–1438. https://doi.org/10.1046/j.1365-2648.2000.01449.x
13.
DaveyM. P.KissilK.LynchL.HarmonL.-R.HodgsonN. (2013). A culturally adapted family intervention for African American families coping with parental cancer: Outcomes of a pilot study. Psycho-Oncology, 22(7), 1572–1580. https://doi.org/10.1002/pon.3172
14.
DiamondI. R.GrantR. C.FeldmanB. M.PencharzP. B.LingS. C.MooreA. M.WalesP. W. (2014). Defining consensus: A systematic review recommends methodologic criteria for reporting of Delphi studies. Journal of Clinical Epidemiology, 67(4), 401–409. https://doi.org/10.1016/j.jclinepi.2013.12.002
15.
EllisS. J.WakefieldC. E.AntillG.BurnsM.PattersonP. (2017). Supporting children facing a parent’s cancer diagnosis: A systematic review of children’s psychosocial needs and existing interventions. European Journal of Cancer Care, 26(1). https://doi.org/10.1111/ecc.12432
16.
FlahaultC.BarthierS.DolbeaultS. (2003). « Quand j’avais huit ans, ma mère a eu un cancer »: Un film et un groupe de partage en prévention des réactions anxieuses infantiles et parentales à l’annonce du cancer et de ses traitements. [“When I was eight years old, my mom had cancer”: A movie and a group in prevention of children and parental anxious reactions when announcing cancer and its treatments]. Revue Francophone de Psycho-Oncologie, 2(1-2), 17–24.
17.
GeddaM. (2015). Traduction française des lignes directrices PRISMA pour l’écriture et la lecture des revues systématiques et des méta-analyses. Kinésithérapie, La Revue, 15(157), 39–44. https://doi.org/10.1016/j.kine.2014.11.004
18.
GiesbersJ.de LeeuwI. M. V.van ZuurenF. J.KleverlaanN.van der LindenM. H. (2010). Coping with parental cancer: A web-based peer support in children. Psycho-Oncology, 19(8), 887–892. https://doi.org/10.1002/pon.1636
19.
GreeningK. (1992). The « Bear Essentials » program: Helping young children and their families cope when a parent has cancer. Journal of Psychosocial Oncology, 10(1), 47–61. https://doi.org/10.1300/J077v10n01_05
HeineyS. P.LesesneC. A. (1996). Quest. An intervention program for children whose parent or grandparent has cancer. Cancer Practice, 4(6), 324–329.
22.
InhesternL.HallerA.-C.WlodarczykO.BergeltC. (2016). Psychosocial interventions for families with parental cancer and barriers and facilitators to implementation and use—A systematic review. PLoS One, 11(6), Article e0156967. https://doi.org/10.1371/journal.pone.0156967
23.
JohnK.BeckerK.MattejatF. (2010). [Mothers with breast cancer and their children: Initial results regarding the effectiveness of the family oriented oncological rehabilitation program « gemeinsam gesund werden »]. Praxis der Kinderpsychologie und Kinderpsychiatrie, 59(5), 333–358. https://doi.org/10.13109/prkk.2010.59.5.333
24.
JohnK.BeckerK.MattejatF. (2013). Impact of family-oriented rehabilitation and prevention: An inpatient program for mothers with breast cancer and their children. Psycho-Oncology, 22(12), 2684–2692. https://doi.org/10.1002/pon.3329
25.
JohnsonJ. L.NorbyP. A. (1981). We can weekend: A program for cancer families. Cancer Nursing, 4(1), 23–28.
26.
KobayashiM.HeineyS. P.OsawaK.OzawaM.MatsushimaE. (2017). Effect of a group intervention for children and their parents who have cancer. Palliative & Supportive Care, 15(5), 575–586. https://doi.org/10.1017/S1478951516001115
27.
KühneF.KrattenmacherT.BergeltC.ErnstJ. C.FlechtnerH.-H.FührerD.HerzogW.KlitzingK. v.RomerG.MöllerB. (2012). Parental palliative cancer: Psychosocial adjustment and health-related quality of life in adolescents participating in a German family counselling service. BMC Palliative Care, 11, Article 21. https://doi.org/10.1186/1472-684X-11-21
28.
Landry-DattéeN.BoinonD.RoigG.BouregbaA.Delaigue-CossetM.-F.DauchyS. (2016). Telling the truth…with kindness: Retrospective evaluation of 12 years of activity of a support group for children and their parents with cancer. Cancer Nursing, 39(2), E10–E18. https://doi.org/10.1097/NCC.0000000000000262
29.
LewisF. M.BrandtP. A.CochraneB. B.GriffithK. A.GrantM.HaaseJ. E.HouldinA. D.Post-WhiteJ.ZahlisE. H.ShandsM. E. (2015). The enhancing connections program: A 6-State randomized clinical trial of a cancer parenting program. Journal of Consulting and Clinical Psychology, 83(1), 12–23. https://doi.org/10.1037/a0038219
30.
LewisF. M.CaseyS. M.BrandtP. A.ShandsM. E.ZahlisE. H. (2006). The enhancing connections program: Pilot study of a cognitive-behavioral intervention for mothers and children affected by breast cancer. Psycho-Oncology, 15(6), 486–497. https://doi.org/10.1002/pon.979
31.
LiuM.MorèreJ.-F.VernoisS.CasassusP.BaubetT. (2012). Soutenir les enfants de parents touchés par le cancer. Soins - Pediatrie, Puericulture, 34(270), 42–45. https://doi.org/10.1016/j.spp.2012.09.001
PhillipsF.PrezioE. A. (2017). Wonders & worries: Evaluation of a child centered psychosocial intervention for families who have a parent/primary caregiver with cancer. Psycho-Oncology, 26(7), 1006–1012. https://doi.org/10.1002/pon.4120
34.
SempleC. J.McCaughanE. (2013). Family life when a parent is diagnosed with cancer: Impact of a psychosocial intervention for young children. European Journal of Cancer Care, 22(2), 219–231. https://doi.org/10.1111/ecc.12018
ShallcrossA. J.VisvanathanP. D.McCauleyR.ClayA.van DernootP. R. (2016). The effects of the CLIMB® program on psychobehavioral functioning and emotion regulation in children with a parent or caregiver with cancer: A pilot study. Journal of Psychosocial Oncology, 34(4), 259–273. https://doi.org/10.1080/07347332.2016.1191577
37.
SpathM. L. (2007). Children facing a family member’s acute illness: A review of intervention studies. International Journal of Nursing Studies, 44(5), 834–844. https://doi.org/10.1016/j.ijnurstu.2006.05.008
38.
Taylor-BrownJ.AchesonA.FarberJ. M. (1993). Kids can cope: A group intervention for children whose parents have cancer. Journal of Psychosocial Oncology, 11(1), 41–53. https://doi.org/10.1300/J077V11N01_03
39.
ThastumM.Munch-HansenA.WiellA.RomerG. (2006). Evaluation of a focused short-term preventive counselling project for families with a parent with cancer. Clinical Child Psychology and Psychiatry, 11(4), 529–542. https://doi.org/10.1177/1359104506067875
40.
VisserA.HuizingaG. A.van der GraafW. T. A.HoekstraH. J.Hoekstra-WeebersJ. E. H. M. (2004). The impact of parental cancer on children and the family: A review of the literature. Cancer Treatment Reviews, 30(8), 683–694. https://doi.org/10.1016/j.ctrv.2004.06.001
41.
WalczakA.McDonaldF.PattersonP.DobinsonK.AllisonK. (2018). How does parental cancer affect adolescent and young adult offspring? A systematic review. International Journal of Nursing Studies, 77, 54–80. https://doi.org/10.1016/j.ijnurstu.2017.08.017
