Development of a Support Program for Children of Parents With Cancer: Expert Consensus Using the Delphi Method

Abstract

Introduction

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.

Keywords

parental cancer child support support progam child caregiver burden psychology Delphi method support program minor caregivers help program

Get full access to this article

View all access options for this article.

References

Adam

Kitzmann

Rios

Pegliasco

Olivier

J.-B.

Raft

(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

Alexander

O’Connor

Rees

Halkett

(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

Antoni

Soerjomataram

Møller

Bray

Ferlay

(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

Azarbarzin

Malekian

Taleghani

(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

Bedway

A. J.

Smith

L. H.

(1997). For kids only. Journal of Psychosocial Oncology, 14(4), 19–28. https://doi.org/10.1300/J077v14n04_02

Bourrée

Michel

Salmi

L. 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

Bugge

K. E.

Helseth

Darbyshire

(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

Bultmann

J. C.

Beierlein

Romer

Möller

Koch

Bergelt

(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

Buyse

Al-Salehi

Laethem

J.-L. V.

Kentos

Luce

Mekinda

Ena

Roumeguère

Demols

Sokolow

Simon

Bailly

Marchand

Gaspard

(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

10.

Call

D. A. C.

(1990). School-based groups. Journal of Psychosocial Oncology, 8(1), 97–118. https://doi.org/10.1300/J077v08n01_07

11.

Cancer today . (sd). Consulté 11 janvier 2024, à l’adresse. https://gco.iarc.fr/today/home

12.

Chalmers

K. I.

Kristjanson

L. J.

Woodgate

Taylor-Brown

Nelson

Ramserran

Dudgeon

(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.

Davey

M. P.

Kissil

Lynch

Harmon

L.-R.

Hodgson

(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.

Diamond

I. R.

Grant

R. C.

Feldman

B. M.

Pencharz

P. B.

Ling

S. C.

Moore

A. M.

Wales

P. 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.

Ellis

S. J.

Wakefield

C. E.

Antill

Burns

Patterson

(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.

Flahault

Barthier

Dolbeault

(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.

Gedda

(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.

Giesbers

de Leeuw

I. M. V.

van Zuuren

F. J.

Kleverlaan

van der Linden

M. 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.

Greening

(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

20.

Greening

(1999). Support groups for children of patients with cancer. Cancer Practice, 7(4), 208–211. https://doi.org/10.1046/j.1523-5394.1999.74010.x

21.

Heiney

S. P.

Lesesne

C. A.

(1996). Quest. An intervention program for children whose parent or grandparent has cancer. Cancer Practice, 4(6), 324–329.

22.

Inhestern

Haller

A.-C.

Wlodarczyk

Bergelt

(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.

John

Becker

Mattejat

(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.

John

Becker

Mattejat

(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.

Johnson

J. L.

Norby

P. A.

(1981). We can weekend: A program for cancer families. Cancer Nursing, 4(1), 23–28.

26.

Kobayashi

Heiney

S. P.

Osawa

Ozawa

Matsushima

(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.

Kühne

Krattenmacher

Bergelt

Ernst

J. C.

Flechtner

H.-H.

Führer

Herzog

Klitzing

K. v.

Romer

Möller

(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-Dattée

Boinon

Roig

Bouregba

Delaigue-Cosset

M.-F.

Dauchy

(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.

Lewis

F. M.

Brandt

P. A.

Cochrane

B. B.

Griffith

K. A.

Grant

Haase

J. E.

Houldin

A. D.

Post-White

Zahlis

E. H.

Shands

M. 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.

Lewis

F. M.

Casey

S. M.

Brandt

P. A.

Shands

M. E.

Zahlis

E. 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.

Liu

Morère

J.-F.

Vernois

Casassus

Baubet

(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

32.

Lyonnais

É.

(2021). À la recherche d’un consensus professionnel, la méthode Delphi. Sages-Femmes, 20(6), 52–54. https://doi.org/10.1016/j.sagf.2021.09.013

33.

Phillips

Prezio

E. 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.

Semple

C. J.

McCaughan

(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

35.

Shah

B. K.

Armaly

Swieter

(2017). Impact of parental cancer on children. Anticancer Research, 37(8), 4025–4028. https://doi.org/10.21873/anticanres.11787

36.

Shallcross

A. J.

Visvanathan

P. D.

McCauley

Clay

van Dernoot

P. 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.

Spath

M. 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-Brown

Acheson

Farber

J. 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.

Thastum

Munch-Hansen

Wiell

Romer

(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.

Visser

Huizinga

G. A.

van der Graaf

W. T. A.

Hoekstra

H. J.

Hoekstra-Weebers

J. 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.

Walczak

McDonald

Patterson

Dobinson

Allison

(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