RESEARCH ARTICLE Open Access

An integrative review on the informationand communication needs of parents ofchildren with cancer regarding the use ofcomplementary and alternative medicineTrine Stub1*, Agnete E. Kristoffersen1, Grete Overvåg2 and Miek C. Jong1

Abstract

Background: Parents often choose Complementary and Alternative Medicine (CAM) as a supportive agent with theaim to reduce cancer treatment-related symptoms in their children. Therefore, it is necessary to understand parents´information and communication needs regarding CAM. The aim of the present study was to review the researchliterature as to identify the information and communication needs of parents of children with cancer, and thechildren themselves, regarding the use of CAM.

Methods: An integrative systematic review design was chosen. Searches were performed in AMED, CAMbase,CINAHL (Ebsco), EMBASE, PubMed and PsycInfo, Theme eJournals and Karger. The search was limited to studiespublished in English, German, Dutch, and the Scandinavian languages. Using predefined inclusion and exclusioncriteria, two reviewers independently screened the title and abstracts of the relevant papers. A data extraction formand critical appraisal checklists were used to extract data for analysis, and a mixed methods synthesis was applied.

Results: Out of 24 studies included, 67% were of quantitative and 33% of qualitative study design. Five mainthemes emerged from the analysis of 21 studies: Information on CAM, sources of CAM information, communicationabout CAM, informed decision-making on CAM, and Risk/benefit of CAM. The majority of the parents did notdisclose the CAM use of their children because they feared negative reactions from the attending oncologist. Tomake informed treatment decisions for their children, parents wanted unbiased information about CAM and wouldact accordingly. They demand open communication about these modalities and respect for the family’s autonomywhen choosing CAM for their children.

Conclusion: There is an urgent need for parents of children with cancer for high quality information on CAM fromreliable and scientific sources. Development of authoritative evidence-based decision tools is thus warranted toenable health care professionals and parents of children with cancer to make well informed, individual decisionsconcerning CAM.

Keywords: Complementary health approaches, Complementary medicine, Paediatric oncology, Systematic review,Decision-making, Traditional medicine

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you giveappropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate ifchanges were made. The images or other third party material in this article are included in the article's Creative Commonslicence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commonslicence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtainpermission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to thedata made available in this article, unless otherwise stated in a credit line to the data.

* Correspondence: trine.stub@uit.no1National Research Center in Complementary and Alternative Medicine(NAFKAM), Department of Community Medicine, Faculty of Health Sciences,UiT The Arctic University of Norway, Hansine Hansens veg 19, 9019 Tromsø,NorwayFull list of author information is available at the end of the article

BMC ComplementaryMedicine and Therapies

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 https://doi.org/10.1186/s12906-020-02882-y

BackgroundThe symptom burden in children with cancer is high,and is reported to increase with disease progression andcancer-related treatment [1, 2]. According to parents,symptoms such as pain, emotional distress, fatigue andloss of appetite cause the most problems for childrenundergoing cancer treatment [3]. Parents often chooseComplementary and Alternative Medicine (CAM) assupportive agent with the aim to reduce these cancertreatment-related symptoms in their children [4]. CAMis defined as a group of diverse medical and health caresystems, practices, and products that are not generallyconsidered part of conventional medicine [5]. More spe-cifically, if a non-mainstream practice is used togetherwith conventional medicine, it is considered “comple-mentary”, and if a non-mainstream practice is used inplace of conventional medicine, it is considered “alterna-tive” [5]. Reported prevalence rates of CAM use amongchildren with cancer vary between 6 and 100% [6],depending on the definition of CAM, the sample, andcountry surveyed [7]. The prevalence of CAM use is onaverage 47.2% in high-income countries [7]. Additionallyto using CAM as supportive care, parents also use CAMfor treatment and cure of cancer in their children [7].Abandonment of conventional cancer treatment in favorof CAM has been reported, and may have serioussurvival implications for children. A recent study inThailand reported that the median survival duration inchildren who were diagnosed with acute leukemia andsolely used CAM to cure cancer was 1 month, and theirfive-year survival rate 0% [8]. CAM modalities mostcommonly used in children with cancer are herbs, diet-ary and nutritional supplements, and spiritual treatmentsincluding faith, prayer, and healing [6, 7]. Whereaspatterns of CAM use have found to be different betweentreatment and post-treatment in adults with cancer [9],this does not seem to appear in children with cancer. Astudy by Turhan et al. [10] demonstrated that there wasno difference in the use of herbs or vitamins/minerals/nutrient supplements in children during chemotherapytreatment or after chemotherapy treatment.Despite the high prevalence of CAM use in children

with cancer, the majority of parents do not discloseCAM use to the attending oncologist or physician of thechild [7]. Common reasons of parents not to tell aboutCAM are their belief that CAM is safe, fear of the physi-cian’s reaction, that the medical staff lacks knowledge,and that the physician does not ask [7]. However,parent-physician communication on CAM use in chil-dren with cancer is of utmost importance, not alone asto prevent the risk of decreased efficacy of conventionalcancer therapy because of the potential interaction withCAM modalities such as herbs and dietary supplements[11, 12]. Physicians acknowledge that it is important to

know which CAM modalities their patients use, but theyhave little knowledge about them, and find themselvesunable to inform parents about the safety and efficacy ofCAM therapies [13, 14].Other authoritative resources that parents may turn to

for information are websites that advise patients onCAM use for cancer, such as the website of the NationalCancer Institute [15], CAM cancer of NAFKAM (http://cam-cancer.org), and the website of the National Centerfor Complementary and Integrative Health (https://nccih.nih.gov). These websites however, are more di-rected towards cancer in adults and contain sparse to noinformation on the suitability of CAM modalities for usein children. Other sources that parents rely on to obtaininformation about CAM use are the Internet. Informa-tion from Internet is less reliable [16, 17] and can beoverwhelming for parents. In addition, parents oftenlearned about CAM from friends and family [18].To develop future authoritative and reliable CAM re-

sources, specifically for parents of children with cancer,it is necessary to understand which information andcommunications needs they have regarding CAM.Therefore, the present study was initiated with the aimto review the research literature as to identify the infor-mation and communication needs of parents of childrenwith cancer, and the children themselves, regarding theuse of CAM. To the best of our knowledge, no previoussystematic review or protocol for such a planned reviewon information and communication needs of CAM ofparents of children with cancer has been published.

MethodsDesign and objectiveThere are several systematic approaches to review andsynthesize the literature [19]. Given the aim of the study,an integrative review was deemed the most suitable typeof review method. An integrative review is a specificreview method that summarizes past empirical or theor-etical literature to provide a more comprehensive under-standing of a particular phenomenon or healthcareproblem [20]. An integrative review allows for the inclu-sion of studies with different methodologies to morefully understand a particular phenomenon of concern[21]. The aim of this integrative review differs from theaim of a scoping review, which is to identify knowledgegaps, scope a body of literature, or clarify concepts, with-out any methodological quality assessment and integrativesynthesis of the included studies [22]. This integrativereview was performed in accordance with the method-ology of Whittemore and Knafl [21], and the results, wereapplicable, were reported according to the PreferredReporting Items for Systematic review and Meta-Analyses(PRISMA) [23]. The protocol of the integrative review wasnot registered in a database and involved secondary

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 2 of 19

analysis of data already published in the literature. There-fore, the present study was exempt from medical ethicalreview.The objective and main research questions of thisintegrative review were guided by a Population – Concept– Context (PCC) mnemonic [24]. The population wasparents, families, and/or caregivers of children withcancer, and children/adolescents with cancer themselves;the concept was the information and communicationneeds regarding CAM; and the context was studies of bothquantitative and qualitative methodology in all types ofsettings. The objective of this integrative review was toidentify and describe the information and communicationneeds of parents of children with cancer, and children/ad-olescents themselves, regarding CAM. The integrativereview questions were: 1. Which information needs can beidentified for parents of children with cancer, and/or theirchildren? 2. Which sources do parents of children withcancer, and/or their children use to obtain CAM cancer-relevant information? 3. What needs do parents ofchildren with cancer, and/or their children have regardingcommunication about CAM?

Eligibility criteriaEligibility criteria for inclusion and exclusion of studieswere defined according to the PCC mnemonic:1. Thestudies included described the perspective of the parents,families, and caregivers of children with cancer, as wellthe perspectives of children/adolescents with cancer upto 18 years. Studies describing the perspective of health-care professionals or CAM providers were excluded.2.The studies included described how to search and findinformation on CAM regarding childhood cancer andCAM information needs.3. The studies included described the needs to com-

municate about CAM regarding childhood cancer withhealthcare professionals, CAM providers, friends, andrelatives. Studies that described information and com-munication needs regarding cancer in adults wereexcluded, as well as studies that reported solely aboutthe patients’ and/or parents’ disclosure of CAM use(without any study data) to health care professionals.Different quantitative and qualitative research method-

ologies were included such as experience reports, surveys,expert opinions, individual and group interviews, andguidelines. Studies describing all type of cancers and stagesof cancer, including treatment phase, post-treatment, andpalliative phase, and in all settings were included. Studiesincluded could be published in the Danish, Dutch, English,German, Norwegian, and Swedish languages. Since authorsof this integrative review had excellent understanding ofthese six languages, translation of included studies was notnecessary. Studies that were available only in the form ofabstracts or notes were excluded. Searches were notrestricted to any time/date.

Information sources and search strategySearches were performed by a health sciences librarianand the first author in the following databases: AMED,CAMbase, CINAHL (Ebsco), EMBASE, PubMed andPsycInfo. The German publishers Theme eJournals andKarger were also searched for studies. To identifyadditional studies not found by electronic searches, thereference lists of articles were checked. Depending onthe database, abstracts and keywords were searched andvarious combinations of medical subject headings(MESH) terms and keywords were used, such as neo-plasms, paediatrics child, adolescents, puberty, youngadult, alternative therapies, complementary therapies,communication, information, information needs, dia-logue, patient education, physician-patient relations, anddietary supplements. They were combined with “OR”and “AND” (the search-strings are attached as additionalinformation). Keywords were adapted for the otherelectronic databases according to the specific subjectheadings or structure (see supplementary file).

Study selection and data managementSearch results were uploaded in the reference managerprogram Endnote to facilitate study selection, and asingle data management file was produced of all refer-ences identified through the search process. Duplicateswere removed and two authors screened the remainingreferences independently. Two authors read the includedarticles and extracted the data, Disagreements betweenthe authors were discussed and solved. In two cases ofdisagreement between the authors, additional informa-tion from study corresponding authors was sought onthe basis of which it was decided that the articles didnot meet the inclusion criteria. Reasons for excludingarticles were documented. Neither of the review authorswas blind to the journal titles, study authors, or institu-tions. A flowchart of the study selection and identifica-tion according to the (PRISMA-P) guidelines [23] wasgenerated (see Fig. 1). Two authors read the articles andextracted the data. Data was extracted from all includedarticles using a pre-defined data charting form. Dataextracted was study characteristics such as subject of thestudy, methodology, study design, aim, participants,sample size, inclusion and exclusion criteria, mainfindings, and funding of the study.

Appraisal of study qualityCritical appraisal tools from the Joanna Briggs Institutewere used to assess the methodological quality of theincluded cross-sectional studies [25] and expert opinions[26]. Qualitative studies were assessed using the 10-question appraisal tool from the Critical Appraisal SkillsProgram (CASP) checklist [27]. The criteria used tocritically appraise the quality of each study design are

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 3 of 19

described in Table 2. Two review authors conductedstudy quality assessment, and discrepancies between theauthors’ assessments were discussed and resolved. Atable was generated for each quality item among allstudies with the same design.

Data synthesisThe extracted data was analyzed according to the stagesas described by Whittemore and Knafl [21], using amixed methods synthesis [50]. First, primary source datawas divided by three study designs (cross-sectional

studies, expert opinions, and qualitative studies), and asegregated synthesis analysis per design was performed. Datareduction was performed on predetermined thematiccategories (deductive) and new appearing categories (induct-ive) that were relevant for the review question. Predeter-mined thematic categories were risk perception (risk/benefitof CAM), direct risk situations (adverse effects/ negativeinteractions of CAM), indirect risk situations (ethical,disease causality, and treatment philosophy), risk communi-cation (ineffective provider-patient relationship, delay,decline conventional medicine, how to talk about the use of

Fig. 1 Flow chart of the inclusion process in this study

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 4 of 19

CAM), and information regarding CAM (lack of knowledgeabout CAM, where do patients gather information, unmetinformation needs). These categories derived from a previ-ously performed study on perception and communicationamong conventional and complementary health care pro-viders involving cancer patients’ use of CAM [51]. An add-itional predetermined thematic category, informed decisionmaking, derived from a previous study on effective commu-nication about the use of CAM in cancer care [52].The next step was data display, converting data from

individual sources into a matrix display to assemble datafrom multiple sources around the three study designs. Sub-sequently, quantitative data was translated to qualitativedata to allow for a mixed methods synthesis. Constant datacomparisons between the three display matrixes resulted insub-themes and main emerging themes. The emergingthemes were categorized into a table format, and discern-ment of main themes and sub-themes were verified withthe primary source data for accuracy and transparency.Two review authors extensively discussed the outcome ofeach stage in the analysis process as to agree on emergingthemes. Both review authors had previous experience withinterviewing parents of children with cancer concerningtheir information and communication needs on CAM.However, both authors were aware as to not let their previ-ous research experience affect the objectivity of dataanalysis and result interpretation. A record was kept duringthe stages of analysis as to document all thoughts, patterns,relationships, and interpretations made.

ResultsSearchesThe literature searches resulted in 802 potentially relevantstudies (Fig. 1). All abstracts were screened for relevanceusing Endnote version X9 and the Annotated referencestyle. The Endnote program allowed the researcher toread the abstracts, exclude duplicates (n = 125), and putthe studies into different categories of relevance. A total of630 studies were excluded in a first round due to irrele-vance (7 studies were abstracts, 67 studies were duplicates,162 studies were irrelevant, 174 had no information aboutCAM, 104 studies were not about CAM, 97 studiesincluded adults with cancer, 8 studies included health careproviders, 10 studies were in languages other than English,German, Dutch, Swedish, Danish, and Norwegian, and 1study used the same data set as another included study).In a second screening round, 23 studies were excluded (3studies included adults with cancer, 5 studies were notabout CAM, 10 studies had no information about CAM, 5studies had not included the parents’ perspective). A totalof 24 studies (Fig. 1) were included in this review [10, 18,28–49], n = 16 surveys [10, 18, 28–41], n = 5 expertopinions [42–46], and n = 3 qualitative studies [47–49].

The characteristics of included studies are tabulated inTable 1.

Assessment of methodological quality/critical appraisalFive (n = 5) cross-sectional studies were assessed as lowrisk of bias as they had addressed nine out of nine itemsin its design, conduct, and analysis [31, 34, 38, 40, 41](see Table 2). Three cross-sectional studies (n = 3) [10,18, 28] addressed eight items, six studies (n = 6) [30, 32,33, 35–37] addressed seven items, one study (n = 1) [29]addressed six items, and one study (n = 1) [39] addressedonly four out of nine items. Three (n = 3) expert opinionpapers [42, 45, 46] were assessed as low risk of bias asthey had addressed all six items in its design, conduct,and analysis. Two expert opinion papers (n = 2) [43, 44]had addressed five out of six items. One qualitative study(n = 1) [48] was assessed with low risk of bias as it hadaddressed eight out of ten items in its design, conduct,and analysis. One study (n = 1) had addressed six items[49] and one study (n = 1) [47] addressed only four outof ten items. Of n = 24 studies, n = 12 were rated as highmethodological quality (low risk of bias), n = 10 wererated as medium methodological quality, and n = 2 wererated as low methodological quality.

Exclusion of studies for further analysisThree (n = 3) out of the 24 included studies wereexcluded from further analysis [29, 39, 47]. The articleof Ball et al. [29] was about the use of dietary supple-ments by children with a chronic illness. However, only20% of the total respondents were parents of childrenwith cancer. Therefore, the results cannot be generalizedto communication and information needs of parents ofchildren with cancer specifically. The studies of Raja-nandh and Bold et al. [39, 47] were excluded fromfurther analysis due to low methodological quality andthereby high risk of bias (see Table 2). Therefore,twenty-one studies were used for further analysis in thisreview (see Fig. 1).

Main themesThe data was organized in five main themes. Three ofthe five emerging themes directly related to the threeintegrative review questions: Information on CAM(review question 1), sources of CAM information (reviewquestion 2), and communication about CAM with foursub-themes (respect, decline of conventional medicine,hope and control, disclosure of CAM use) (review ques-tion 3). Another emerging theme that related to reviewquestion 1 was informed decision-making on CAM. Thefifth main theme observed was risk/benefit of CAM.“CAM use” refers to the use of CAM among childrenwith cancer.

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 5 of 19

Table

1Characteristicsof

theinclud

edstud

ies

Stud

yID

Subject/

Popu

latio

nMetho

dDesign

Setting

Aim

(s)

Participant(s)

Sample

size

Inclusion/exclusion

criteria

Results

Fund

ing

Agap

itoJ,

2000

[42]

Ethicalissuesof

declining

conven

tional

cancer

treatm

ent

Text

andop

inion

pape

r,basedon

acase

NA

Hospital

NA

13yearsbo

ywith

osteosarcoma

with

lung

metastasis

n=1

NA

Theob

ligationof

conven

tionalh

ealth

care

providersto

treatpe

ople

holistically,and

the

need

forthem

tode

lvemorede

eply

into

the

philosoph

ical

unde

rpinning

sof

parentsview

points

NR

AL-Qud

imat,

MR,

2011

[28]

Use

ofCAM

amon

gchildren

with

cancer

inJordan

Questionn

aire

and

interviewswith

parents

Descriptive

cross-

sectional

design

Apaed

iatric

oncology

departmen

tin

Jordan

Toexam

inethe

useof

CAM

amon

gchildren

with

cancer,

includ

ing

prevalen

ce,C

AM

mod

alities

used

,reason

foruse

andparent-

perceivedbe

nefit

ofCAM

Parentsof

childrenwith

cancer

n=84

0–18

yearsof

age;

diagno

sed

with

cancer

atleast

2mon

thspriorto

thestud

ywith

parentsthat

agreed

toparticipatein

the

stud

y

Nearly

halfof

the

participants(45,5%

)that

used

CAM

perceivedbe

nefits

from

CAM.Paren

tsuseCAM

tosupp

ort

theirchild’smed

ical

treatm

entandto

use

allp

ossiblemetho

dsto

cure

theirchild.

Mosthave

not

discussedthisuse

with

themed

ical

staff

Nofund

ing

The

American

Academ

yof

Paed

iatrics,

2001

[43]

Childrenwith

chronicillne

ssanddisabilities

includ

ingcancer

Recommen

datio

nsforclinicians/

paed

iatricians

Guide

lines

USA

Toprovide

inform

ationand

guidance

for

paed

iatricians

whe

nconsultin

gfamilies

abou

tCAM

NA

NA

NA

Itisim

portantto

maintainascientific

perspe

ctiveto

providebalanced

advice

abou

ttherapeutic

optio

ns,

togu

ardagainstbias,

andto

establishand

maintainatrustin

grelatio

nshipwith

families

NR

BallS

D,

2005

a[29]

Thenature

and

prevalen

ceof

dietary

supp

lemen

tuse

amon

gchronically

illchildren

Self-repo

rted

questio

nnaire

Survey

Subspeciality

med

icalclinics

inSouthLake

City,U

tah

Investigatethe

nature

and

prevalen

ceof

dietary

supp

lemen

tuse

asan

adjunctto

conven

tional

med

ical

treatm

entin

chronically

illchildren

Parentsof

chronically

illchildren

n=505,of

which

n=100with

cancer

Parentswith

chronically

illchildrenthat

were

accompanyingtheir

child

ontheclinical

visitin

thepe

riod

February

toaugu

st,

2001.

Dietary

supp

lemen

tsuseisprevalen

tam

ongchronically

illchildrenespe

cially

amon

gthosewith

poor

diagno

sisor

for

who

marelim

ited

conven

tionalm

edical

treatm

ent.The

physicians

wereno

tinform

edabou

ttheir

patientsuseof

dietary

supp

lemen

ts

NR

Ben

Arush,

2006

[30]

Prevalen

ce,

type

sand

characteristics

ofCAM

use

Face

toface

questio

nnaire

Cross-

sectional

stud

y

Paed

iatric

haem

atolog

yon

cology

departmen

tat

Meyer

Children’s

hospitalin

Toevaluate

the

prevalen

ce,types

andcharacteristics

ofCAM

useby

ethn

icde

mog

raph

icsocio-econ

omic

anddiseasefactors

Parentsof

childrenwith

cancer,or

adolescents

with

cancer

n=74

parentsandn=26

adolescents

Allpatients/parents

who

visitedthe

clinicdu

ringthe

lasthalfof

2003.

Patientswith

benign

teratoma

andcranio-

Mostparticipants

wereinterested

inreceivinginform

ation

onCAM

andthe

availabilityof

CAM

intheho

spital.Most

used

CAM

with

out

NR

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 6 of 19

Table

1Characteristicsof

theinclud

edstud

ies(Con

tinued)

Stud

yID

Subject/

Popu

latio

nMetho

dDesign

Setting

Aim

(s)

Participant(s)

Sample

size

Inclusion/exclusion

criteria

Results

Fund

ing

Rambam

med

ical

centre,Israel

aswellasinvolve

men

tof

thetreatin

gph

ysicians

pharyngiom

awere

exclud

edinform

ingtheir

physician.

BoldJ,

2001

a[47]

Childrenwith

cancer

Semi-structured

teleph

one

interviews

Qualitative

stud

yRegion

ofSaskatchew

an,

Canada

Toestim

atethe

preferen

ceof

unconven

tional

therapyuse,

includ

ing

iden

tificationof

the

common

lyused

therapiesandto

describ

eexpe

ctations

andexpe

riences

offamilies

seeking

unconven

tional

therapies

Parentsof

all

childrenwith

cancer

n=44

Parentsof

all

childrenwho

were

aged

14yearsor

youn

gerwhe

ndiagno

sedwith

cancer

durin

g1994

and1995

inSaskatchew

anand

stilllivingat

the

timeof

thestud

y

36%

ofthe

participantsrepo

rted

usingCAM,21%

considered

it.Parents

iden

tifiedane

edfor

better

quality

inform

ation

abou

tCAM

NationalC

ancer

Institu

teof

Canada;

TheCanadianCancer

Society;L.Schu

lman

TrustFund

Clayton

MF,

2006

[44]

Braintumou

rin

a10

year

oldbo

yText

andop

inion

pape

rbasedon

acase

NA

NA

Describethe

impo

rtance

ofgo

odpatient-careprovider

commun

ication,

basedon

nursinga

10year

oldbo

ywho

died

atho

me(pallia

tiveph

ase)

NA

NA

NA

Com

mun

icationby

usingevery

oppo

rtun

ityto

learn

andlessen

following

upon

concerns,and

delivering

inform

ationin

away

that

preservestheir

(paren

ts)ho

peand

respecttheir

decision

s

NR

Fernan

dez

C,1

998[31]

Paed

iatric

patients

diagno

sedwith

cancer

Questionn

aire

Retrospe

ctive

coho

rtstud

yTertiary

care

paed

iatric

oncology

Cen

trein

British

Colum

bia

Toexam

inetheuse

ofCAM

therapiesin

paed

iatricon

cology

patients

Parentsof

childrenwith

cancer

n=366

Parentsof

children

inwho

ma

diagno

sisof

cancer

was

madebe

tween

June

30,1989and

July1,1995.

Patientswho

died

with

in1weekof

diagno

sis,patients

with

Lang

erhans’

cellhistiocytosis,

bening

teratomas

and

cranioph

aryngiom

awereexclud

ed

42%

used

CAM.

Herbalteas,plant

extractsandvitamins

was

themostused

.Factorsthat

influen

cedCAM

use

wereprioruse,

positiveattitud

etowards

CAM,

inform

ationfro

mfamilies

andfrien

dsor

from

CAM

practitione

rs

NR

Fletch

erPC

,20

04[48]

Children

diagno

sedwith

cancer

Phon

einterviews

Qualitative

stud

yOntario,

Canada

Tointerview

parents

abou

ttheexpe

rience

they

facedwhe

ncoping

with

achild

who

hasbe

endiagno

sedwith

cancer,w

ithfocuson

theuseof

CAM

therapies

Parentsof

childrenwith

cancer

n=29

Parentswho

sechildrenhave

been

diagno

sedwith

cancer

with

inthe

previous

5-year

perio

d.Parentswho

losttheirchild,or

ofwhich

thechild

was

inthepalliative

stagewere

exclud

ed

Threethem

es1:

Parent’sop

positio

nto

CAM

utilisatio

n.2.Parentssupp

ortof

CAM

usewith

their

childrenwith

cancer

3.Ph

ysicians

view

sof

CAM

aspe

rceived

byparents

NR

Gag

nonEM

,20

03[32]

Paed

iatric

oncology

patients

Questionn

aire

Cross-

sectional

survey

Paed

iatric

oncology

clinicin

USA

Toinvestigateho

wparentspreferred

levelo

fcontrolin

Parentsor

caretakersof

paed

iatric

n=118

Englishspeaking

parentsof

paed

iatricpatients,

Mostparents

preferredactiveor

collabo

rative

TheAge

ncyfor

Health

care

Research

andQuality,The

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 7 of 19

Table

1Characteristicsof

theinclud

edstud

ies(Con

tinued)

Stud

yID

Subject/

Popu

latio

nMetho

dDesign

Setting

Aim

(s)

Participant(s)

Sample

size

Inclusion/exclusion

criteria

Results

Fund

ing

treatm

entde

cision

makingisrelatedto

theirpe

rson

alhe

alth

care

involvem

ent

andtheirde

cision

touseCAM

fortheir

child

patients

accompanyinga

child

foran

appo

intm

ent,the

child

hadbe

endiagno

sedat

least

1mon

thprior,and

was

either

receiving

treatm

entor

had

completed

treatm

entless

than

2yearsprior.

Parents

accompanying

childrenfor

consultatio

nsor

emerging

med

ical

visitswere

exclud

ed

decision

-making.

Preferen

cefor

controlinde

cision

makingwas

not

associated

with

CAM

use

Leon

ardP.Zakin

Cen

terforIntegrated

Therapiesat

the

Dana-Farber

Cancer

Institu

te

Gilm

ourJ,

2011

[45]

Adverse

effectsof

chem

othe

rapy

ina6yearsold

boydiagno

sed

with

med

ulloblastoma

Expe

rtop

inion

basedon

acase

stud

y

NA

NA

Toexplainclinicians

obligations

whe

nob

taininginform

consen

tto

treatm

ent

anddiscussthe

clinician’s

respon

sibilityto

tell

parentsor

patients

abou

tapo

tential

bene

ficialC

AM

therapy

A6year

old

boy

NA

NA

Physicians

have

anethicald

utyto

bene

ficen

ce,todo

good

andno

tharm

.They

mustbe

aware

ofcurren

tresearch

onpain

and

symptom

managem

entand

othe

raspe

ctsof

care.Thismay

includ

eCAM

therapieswhe

nthereisreliable

eviden

ceof

therapeutic

bene

fit

SikKidsfoun

datio

n,Alberta

heritage

Foun

datio

nfor

Med

icalResearch,

TheCanadian

Institu

tesof

Health

research.

Goz

umS,

2007

[33]

Childho

odcancer

Semi-structured

questio

nnaire

(face

toface

interviewsbased

onthe

questio

nnaire)

Cross-

sectional

stud

y

Paed

iatric

oncology

unit

ineastern

Turkey

Togain

insigh

tinto

theprevalen

ceand

factorsrelatedto

the

useof

CAM

Parentsof

childrenwith

cancer

n=88

Parentsof

children

with

cancer

who

weretreatedat

the

centre

andhad

childrenbe

tween

0and18

yearsof

age,at

least2

mon

thspo

stdiagno

sisand

agreed

verballyto

participate

48,9%

used

CAM.

Mostcommon

was

herbalprod

ucts/

tea/meal

NR

Krogstad

T,20

07[49]

Childho

odcancer

Focusgrou

pinterviews

Qualitative

stud

yHospital

Investigatethe

percep

tions

and

expe

riences

abou

tdietarysupp

lemen

tsandnaturalp

rodu

cts

amon

gparentsof

childrenwith

cancer.

From

who

mthey

prefer

toreceive

inform

ationfro

mand

how

they

perceive

advice

from

family

andfrien

ds

Parentsof

childrenwith

cancer

n=21

NR

Parentswerevery

restrictivein

giving

naturalp

rodu

ctsto

theirchildren.

How

ever,m

any

parentsfelt

considerable

pressure

from

med

ia,com

mercial

advertisingandthe

health

food

market

togive

such

prod

uctsto

the

NR

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 8 of 19

Table

1Characteristicsof

theinclud

edstud

ies(Con

tinued)

Stud

yID

Subject/

Popu

latio

nMetho

dDesign

Setting

Aim

(s)

Participant(s)

Sample

size

Inclusion/exclusion

criteria

Results

Fund

ing

child.

Recommen

datio

nsfro

mfrien

dsand

family

were

difficultto

hand

lebe

causefailure

tofollow

upadvice

feltlikeabu

rden

.Theparentsdid

notreceive

inform

ationfro

mtheirph

ysicianabou

ttheseprod

ucts

Ladas

EJ,

2014

[34]

Cancerdiagno

sis

inchildrenand

adolescents

Questionn

aire

Cross-

sectional

stud

y

Paed

iatric

oncology

centre

inGuatemala

City

Tode

scrib

ethe

prevalen

ce,p

attern

ofuseand

descrip

tive

associations

ofTC

AM

buseam

ong

childrendiagno

sed

with

cancer

Parentsof

childrenand

adolescents

n=100

Parentsof

children

andadolescents

who

were

unde

rgoing

treatm

entfor

cancer,receiving

palliativecare,or

have

completed

treatm

ent

90%

ofparents

repo

rted

useof

TCAM.67%

used

TCAM

forsupp

ortive

care

and34%

for

curativepu

rposes.

Mostusewas

oral

supp

lemen

ts

NR

Laen

glerA,

2008

[35]

Cancerdiagno

sis

unde

rtheage

of15

Questionn

aire

Retrospe

ctive

survey

AllGerman

hospitalsthat

repo

rted

totheGerman

Childho

odCancer

Registry

Tocompare

the

grou

pof

homeo

pathyusers

with

usersof

othe

rCAM

therapieswith

regard

topatternof

CAM,and

the

attend

ing

circum

stancesof

previous

expe

riences

ofCAM

Parentsof

childrenwith

cancer

n=367

Allparentsin

Germanywith

achild

unde

rtheage

of15

diagno

sedin

2001

with

cancer

that

was

recorded

bytheGerman

childho

odcancer

registry.Exclusion

:Death

ofachild

with

inthefirst8

weeks

afterthe

diagno

sisand

developm

entof

asecond

cancer

35%

ofthe

respon

dentshad

used

CAM.Sou

rces

ofinform

ationabou

tCAM

werein

most

casesno

doctors.

71%

oftheusershad

commun

icated

the

useof

CAM

with

thedo

ctor

TheDeutsche

Kind

erkreb

sstiftung

Bonn

Mag

iT,

2015

[18]

Childrenand

adolescentswith

cancer

Questionn

aire

Retrospe

ctive

survey

University

Children

HospitalB

ern,

Switzerland

Tocollect

inform

ationon

CAM

useby

childho

odcancer

patients

Families

ofchildrenwith

cancer

n=123

Allpatients

betw

een0and18

yearswho

were

diagno

sedbe

tween

Janu

ary1,2002

and

Decem

ber31,2011,

andregistered

intheSw

iss

childho

odcancer

Registry

(SCCR).

Exclusion:Death

with

in2mon

thsof

diagno

sisand

parentsrefusalto

participatein

asurvey

53%

hadused

CAM,

25%

ofpatients

received

inform

ation

abou

tCAM

from

med

icalstaff.Most

frequ

entreason

for

notusingCAM

was

lack

ofinform

ation

Swisspe

diatric

oncology

grou

p;Schw

eizeriche

konferen

zde

rkanton

alen

gesund

heitd

irektorinne

nun

d-direktoren

;Sw

issCancer

Research;

Kind

erkreb

shilfeSchw

eiz;

Ernst-Göh

nerStiftun

g;Stiftun

gDom

aren

a,CSL

Behring

Molassiotis

A,2

004[36]

Childrenwith

cancer

betw

een

5and18

years

ofage

Questionn

aire

Cross-

sectionalstudy

Alarge

hospitalintheUK

Tode

term

inethe

preferen

ceof

CAM

useam

ongchildren

with

cancer

and

Parentsof

childrenwith

cancer

n=49

Parentsof

children

who

have

been

diagno

sedwith

cancer

betw

een

32,7%

repo

rted

CAM

use.Mostused

were

multivitamins,

arom

athe

rapy

and

NR

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 9 of 19

Table

1Characteristicsof

theinclud

edstud

ies(Con

tinued)

Stud

yID

Subject/

Popu

latio

nMetho

dDesign

Setting

Aim

(s)

Participant(s)

Sample

size

Inclusion/exclusion

criteria

Results

Fund

ing

motives

ofparents

fordo

ingso

Novem

ber1999

andNovem

ber2001

massage

.Paren

tsiden

tifiedane

edfor

moreinform

ation

Ndao

DH,

2013

Childho

odcancer

survivors

Interviewer

(inpe

rson

orph

one)

based

questio

nnaire

Survey

Herbe

rtIrving

Child

and

Ado

lescen

t,Oncolog

ycentre,

Colum

bia

University

med

ical

centre,N

Y

Toinvestigatethe

prevalen

ceof

CAM

use,type

sandreason

foruse,andthe

determ

inantsof

use

amon

gsurvivorsof

childho

odcancer

Children,

adolescents

andyoun

gadults

n=197

Children,

adolescentsand

youn

gadults

visitin

gtheHerbe

rtIrvingOncolog

yCen

tre,all

participantswereat

least3mon

thsfro

mcompletionof

treatm

entfor

cancer

58%

repo

rted

using

CAM,72%

ofwhich

used

biolog

ically

basedtherapies

(sup

plem

ents,

nutrition

,vitamins,

minerals,he

rbs).51%

ofallC

AM

therapies

weredisclosedto

theph

ysician

TamarindFoun

datio

n

OlbaraG,

2018

[38]

Health

care

providers

perspe

ctives

onTC

AM

inKenya

Questionn

aire

Cross-

sectional

stud

y

MTRH,the

largestpu

blic

tertiary

hospitalin

Western

Kenya

Toexplorehe

alth

care

providers

perspe

ctives

onTC

AM

involved

inthecare

ofchildrenwith

cancer,p

ersonal

expe

riencewith

TCAM,h

ealth

beliefs,

compo

nentsof

TCAM,

recommen

ding

ordiscou

raging

TCAM,

commun

ication

betw

eenhe

alth

care

providers,parents

andTC

AM

practitione

rsand

know

ledg

eabou

tTC

AM

Health

care

providers

N=155

Allhe

alth

care

providersiden

tified

from

theho

spital

employed

registry

Health

care

providers

feltthat

commun

icationwith

parentsabou

tTC

AM

shou

ldbe

emph

asised

and

wereen

thusiasticto

improvetheir

know

ledg

eabou

tit.

NR

Rajana

ndh

MG,2

018a

[39]

Paed

iatriccancer

Questionn

aire

Survey

Tertiary

care

SouthIndian

Hospital

Investigatethe

prevalen

ceof

CAM

useam

ong

paed

iatriccancer

patientsin

atertiary

care

hospital

Maleand

female

patientsless

than

18year

ofage,or

theirparents

n=277

Patientsless

than

18year

ofage

clinicaldiagno

sed

with

anytype

ofcancer

formore

than

threemon

ths.

Patientswith

any

comorbiditieswere

exclud

ed

7,6%

used

CAM,

mostcommon

Aryurveda.N

oneof

theparentsdisclosed

theCAM

useto

the

oncologists

NR

Sing

endon

kM,2

013[40]

Paed

iatriccancer

Questionn

aire

Prospe

ctive

multicen

tre

stud

y

Sixacadem

icho

spitalsin

the

Nethe

rland

s

Investigatethe

prevalen

ceof

CAM

use,po

ssible

determ

inantsof

use,

parentalattitud

etowards

commun

icationand

research

onCAM

therapies

Parentsof

childrenwith

cancer

n=304

Parentsof

children

with

cancer

age0–

21with

adiagno

sis

ofmalignancyin

thepast5years,

attend

ingthe

oncology

outpatient

clinics

from

June

2011

toJanu

ary2012.

Parentswith

insufficien

tknow

ledg

eof

the

Dutch

lang

uage

wereexclud

ed

42,4%

hadused

CAM

thepast12

mon

ths.

19,1%

hadused

morethan

onetype

ofCAM,26.5%

had

used

over

the

coun

terprod

ucts.

75%

foun

dCAM

mod

alities

effective

Nofund

ing

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 10 of 19

Table

1Characteristicsof

theinclud

edstud

ies(Con

tinued)

Stud

yID

Subject/

Popu

latio

nMetho

dDesign

Setting

Aim

(s)

Participant(s)

Sample

size

Inclusion/exclusion

criteria

Results

Fund

ing

Susilawati

D,2

016[41]

Cancerdiagno

sis

inchildren

Questionn

aire

Cross-

sectional

stud

y

Paed

iatric

departmen

tof

aho

spitalin

Indo

nesia

Exploreandcompare

perspe

ctives

(paren

tsandhe

alth

care

profession

als)on

CAM

inchildrenwith

cancer

Caretakersof

childrenwith

cancer

n=176

Allparentsof

childrenwith

cancer

who

were

hospitalized

orvisitedtheclinic

from

Septem

ber

2013

toOctob

er2014

54%

thinkthat

CAM

may

behe

lpfulin

cancer

treatm

entof

children.Most

recommen

dedCAM

was

prayer

(93%

).Health

care

providers

andparentshad

different

perspe

ctive

onCAM

usein

childrenwith

cancer

Noo

rd-ZuidProg

ramma,

TheStichtingMed

icines

forALL

andthedo

ctor

2DoctorProg

ram

TautzC,

2005

[46]

Childrenwith

cancer

Expe

rtop

inion

NA

Child

and

adolescence

med

icine

departmen

tof

thege

neral

hospital

Herde

cke,

Germany

Toprovidean

overview

oftheCAM

metho

dsmost

common

lyused

inthetreatm

entof

childrenwith

cancer

Parentsand

doctors

NA

NA

Thetheo

retic

bases

foranthropo

soph

ical

med

icine,

homeo

pathy,

phytothe

rapy,

Bosw

ellia

prep

arations,

vitamins,en

zymes,

diarysupp

lemen

tsandpsycho

-oncolog

yarede

scrib

ed

NR

Turhan

AB,

2016

[10]

Childho

odcancer

Questionn

aire

Cross-

sectional

stud

y

Outpatient

paed

iatric

oncology

clinic

Toexplorethe

frequ

ency

ofCAM

use,factorsaffecting

theuse,andthe

individu

alCAM

treatm

entsused

,the

percep

tionof

families

regardingthe

efficacyandsafety

ofCAM

andtheir

sourcesof

inform

ation

Parent

ofchildrenwith

cancer

n=74

Children

unde

rgoing

chem

othe

rapy

orwho

have

completed

courses

ofchem

othe

rapy,

betw

een0and18

years,in

thelast

threemon

thspo

stdiagno

sis,and

parentsagreed

verballyto

participate.Children

inpalliativecare,

haddied

,orhad

second

cancers

wereexclud

ed

67.5%

used

these

prod

ucts,m

ain

source

ofinform

ationwas

internet,usedCAM

with

outinform

ation

healthcare

profession

als,

incorporateitinto

conven

tionalcare

NR

NANot

applicab

leM,N

RNot

Repo

rted

,aExclud

edfrom

furthe

ran

alysisdu

eto

either

poor

metho

dologicalq

ualityor

othe

rbias,bTC

AM,Traditio

nalC

AM

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 11 of 19

Table

2Assessm

entof

themetho

dologicalq

ualityof

each

includ

edstud

y

1.Sample

represen

tative

forthetarget

popu

latio

n?

2.Sampleinclud

edin

thestud

yin

avalid

andreliable

way?

3.Ade

quate

explanationwhe

ther

therespon

dents

differedfro

mno

n-respon

ders?

4.Istherean

acceptable

respon

serate

(70%

orabove)?

5.Are

measuremen

tsapprop

riate?

6.Isdata

collection

standardized

?7.Isdata

analysis

standardized

?

8.Are

the

results

relevant

for

clinical

practice?

9.Are

the

results

inlinewith

othe

ravailable

stud

ies?

Survey

sa

AL-Qudimat,M

R,2011

[28]

++

–+

++

++

+

BallSD

,2005[29]

++

??

–+

++

+

BenArush,2006

[30]

++

??

++

++

+

Fernan

dezC,

1998

[31]

++

++

++

++

+

Gagno

nEM

,2003

[32]

++

??

++

++

+

Gozum

S,2007

[33]

++

?–

++

++

+

LadasEJ,2014[34]

++

++

++

++

+

LaenglerA,2008

[35]

++

?–

++

++

+

MagiT,2015[18]

++

+–

++

++

+

Molassio

tisA,

2004

[36]

++

––

++

++

+

NdaoDH,2013

[37]

++

–?

++

++

+

OlbaraG,2018[38]

++

++

++

++

+

Rajana

ndhMG,

2018

[39]

+?

–?

–+

++

–

Sing

endonk

M,

2013

[40]

++

++

++

++

+

Susilaw

atiD

,2016

[41]

++

++

++

++

+

Turhan

AB,2016

[10]

++

?+

++

++

+

1.Isthe

source

ofthe

opinionclea

rly

iden

tifie

d?

2.Doe

sthe

source

ofthe

opinionha

vestan

dingin

the

field

ofexpertise?

3.Are

theinterests

oftherelevant

pop

ulationthe

centralfoc

usof

the

opinion?

4.Isthestated

positionthe

resultof

anan

alytical

process?

5.Isthere

referenc

eto

the

extant

literature?

6.Isan

yinco

ngruen

cewith

theliterature/

sourceslogically

defen

ded

?

Expertop

inions

b

Agapito

J,2000

[42]

++

++

++

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 12 of 19

Table

2Assessm

entof

themetho

dologicalq

ualityof

each

includ

edstud

y(Con

tinued)

1.Sample

represen

tative

forthetarget

popu

latio

n?

2.Sampleinclud

edin

thestud

yin

avalid

andreliable

way?

3.Ade

quate

explanationwhe

ther

therespon

dents

differedfro

mno

n-respon

ders?

4.Istherean

acceptable

respon

serate

(70%

orabove)?

5.Are

measuremen

tsapprop

riate?

6.Isdata

collection

standardized

?7.Isdata

analysis

standardized

?

8.Are

the

results

relevant

for

clinical

practice?

9.Are

the

results

inlinewith

othe

ravailable

stud

ies?

TheAm

erican

Academ

yof

Paediatrics,2001

[43]

++

++

++

ClaytonMF,2006

[44]

++

++

+?

Gilm

ourJ,2011

[45]

++

++

++

TautzC,

2005

[46]

++

++

++

1.Was

there

aclea

rstatem

entof

theaimsof

theresearch

?

2.Isaqua

litative

metho

dolog

yap

propriate?

3.Was

theresearch

designap

propriate

toad

dresstheaims

oftheresearch

?

4.Was

the

recruitm

ent

strategy

appropriateto

theaimsof

the

stud

y?

5.Was

thedata

colle

ctionin

away

that

addressed

the

research

issue?

6.Isrelation

ship

betwee

nresearch

eran

dparticipan

tsad

equa

tely

considered

?

7.Have

ethicalissue

sbee

ntake

ninto

consideration?

8.Was

the

data

analysis

sufficiently

rigo

rous?

9.Isthere

aclea

rstatem

ent

of findings?

10.Isthe

research

valuab

le?

Qua

litativestud

iesc

BoldJ,2001

[47]

+?

++

?–

?–

–+

FletcherPC,2004

[48]

++

++

++

–?

++

Krogstad

T,2007

[49]

++

++

+–

––

+–

(+)=

Yes

(−)=

No

(?)=

Uncertain/Una

bleto

assess

Assessedaccordingto

thefollowingchecklists:aTh

eJoan

naBriggs

Institu

te(201

7):C

ritical

App

raisal

toolsforusein

JBIS

ystematicRe

view

s.Che

cklistforAna

lytical

Cross

Sectiona

lStudies.bTh

eJoan

naBriggs

Institu

te(201

7):C

ritical

App

raisal

toolsforusein

JBIS

ystematicRe

view

s.Che

cklistforText

andOpinion

,and

c Critical

App

raisal

SkillsProg

ramme(CASP

)checklistforqu

alita

tiveresearch

(accessed20

19)

Stub et al. BMC Complementary Medicine and Therapies (2020) 20:90 Page 13 of 19

INFORMATION on CAMHaving a child with cancer is time consuming and manyparents do not have the time to find reliable informationabout CAM. This review found that there is an apparentneed among parents of children with cancer for informa-tion on CAM [40]. Fernandez [31] and Molassiotis et al.[36] reported that the most common reason for notusing CAM was lack of information. In a survey, Ben-Arush et al. [30] found that the majority of the parentswere interested in obtaining more information and guid-ance about CAM.Many parents wanted information on CAM from

authoritative sources such as the oncologist or hospitalwhere they are treated. Singendonk et al. [40] reportedthat parents wanted information on CAM to be providedby the treatment oncologist and offered in the hospital.If CAM treatment had been offered in the hospital, theywould have considered it for their child [30, 36]. This isin accordance with a Norwegian study where the parentswould have liked to receive information from the hos-pital staff or the physician [49]. They would also haveliked to receive information from the pharmacist,because they believed this was a more impartial source.This is in line with Fletcher et al. [48] who found in aqualitative interview study that parents wanted informa-tion about CAM integrated in the services they alreadyreceived in the hospital, as lack of time hindered themto examine CAM modalities themselves.Susilawati et al. [41] acknowledged that parents know

little about CAM. This study found that the majority ofthe parents reported that their knowledge about thesafety and efficacy of CAM was inadequate, and theywanted to learn or read more about it.

Sources of CAM informationMany parents want CAM information that is easily ac-cessible, preferably from authoritative sources. However,according to nine studies (n = 9), the sources of informa-tion about CAM were mostly (i) family and friends, (ii)health care providers (CAM and conventional), and (iii)the media [10, 31, 33, 35–37, 45, 49]. (i) Family andfriends: Fernandez et al. [31] reported that parents ofchildren with cancer received information on CAM fromfamilies and friends. This is in accordance with Gozumet al. [33] who reported that most parents in Turkeylearn about CAM from friends and relatives or otherfamilies with children who have cancer. According toGilmour [45], the reason for using family and friends asthe main source of information was that they did notreceive CAM information from the oncologists. Childrenand young adults attending an oncology clinic in NewYork received information from their parents [37]. Krogstadet al. [49] found that parents received information aboutsupplements/herbs from friends, families, commercials, and

natural health food stores. The parents were, however,sceptical towards commercials regarding these products.They regarded information from families and friends trust-worthy, but their advice felt like a burden because of failureto follow up. This was also the case for families in Turkeywhere the most frequent source of information about CAMreported by families was the Internet and relatives [10].Family and friends were also the main source of informa-tion for the majority of the parents in Germany [35] andthe UK [36].(ii) Health care providers (CAM and conventional): In

addition to the parents, children and young adultsattending an oncology clinic in New York also receivedinformation from integrative providers [37]. In Germany[35] the source of information about CAM was in mostcases health care providers other than doctors. Fernandezet al. [31] who investigated the use of CAM reported thatthe factors that influenced the CAM use were prior CAMuse and positive attitude towards CAM, in addition toinformation from CAM providers. Molassiotis et al. [36]reported that health care providers were the second mostcommonly used source of information in the UK. How-ever, in Switzerland Magi et al. [18] found that patientsmainly received information on CAM from the medicalstaff at the University hospital in Bern. In addition, Ladaset al. [34] reported that a source of information aboutTCAM in Guatemala City was doctors and health careprofessionals.(iii) The media: Even though many parents wanted

information on CAM from reliable sources, they oftenused less reliable sources such as the media. Fernandezand Thuran et al. [10, 31] reported that one third of theparticipants in their study received information from thissource. This was in line with Laengler and Ndao et al. [35,37] who found that the media was one out of three sourceswhere parents gathered information on CAM. Molassiotiset al. [36] reported that the parents identified a need formore information and that the media was the mostcommonly used source of information.

Communication about CAMFor better quality of care, communication about CAMuse is needed between parents of children with cancerand their conventional providers. According to theAmerican Academy of Paediatrics, CAM may improvethe quality of life and address specific concerns of thechild and family regarding cancer [43]. Therefore, aconversation about CAM may avert feelings of frustra-tion and powerlessness that impel families to thesemodalities.

Respect Health care providers provide ethical care byrespecting parents’ choice on using CAM for their child.They have an ethical obligation to do good, and respect

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the parents’ needs to try everything for their child. Ateam of nurses managed to maintain open communica-tion with a mother of a severely ill son [44]. The motherinformed them about the supplements the boy used, andthe nurses were able to anticipate adverse interactionswith other medications. She responded to the nurses’willingness to listen by keeping them informed abouther son’s CAM treatment.

Decline of conventional medicine. Autonomy and therole of the family to decide treatment for their child arevital ethical dilemmas when it comes to declining con-ventional medicine. These issues must be handled withcare by health care providers and the government, as dif-ferent philosophic worldviews between parents andhealth care providers may lead to a decline of conven-tional medicine [42]. Agapito described a case where thesocial services department went to court to protect a 13-year-old boy from his father’s influence. The family wasreligious and believed that faith alone could save him.The boy rejected conventional medical care, and thesocial services went to court to overrule this decision.During the legal process, the boy was diagnosed withlung metastasis and the case was dropped. Consensusregarding the choice of treatment can usually bereached, but it requires time and willingness to commu-nicate. However, the decision to go to court created acommunication barrier with the family and thereby thevaluable consensus and share purpose usually foundbetween health care providers and their patients andfamilies broke down [42]. Agapito pointed out theethical obligation of conventional health care providersto treat people holistically and do good [44]. They needto delve more deeply into the philosophical underpin-nings of the parents’ viewpoints.

Hope and control The importance of keeping hopealive when the child is serious ill is important. Loss ofhope creates despondency or desperation, and parentsneed to maintain some sense of control over life, andhope against possible death of their child. Health careproviders provide ethical care by respecting parents’choice on using CAM for their child [44]. The importanceof keeping hope alive when the child was serious ill wasaddressed by three studies in this review [28, 42, 44]. Tomaintain hope, parents often perceived CAM safer andmore efficient than research demonstrated, as to haverationale for trying all possible treatment methods fortheir child [28, 44]. Information about CAM gave a senseof control of the child’s treatment for the parents. It alsoprovided additional ways of helping their child to getthrough his/her cancer treatment. Moreover, it gave par-ents the feeling that they were doing everything possibleto support their child’s recovery [36]. Gagnon and

Recklitis [32] investigated how the parents’ preferred levelof control in treatment decision making was related totheir personal health care involvement and their decisionto use CAM for their children. They found that most par-ents using CAM preferred active or collaborative versuspassive decision-making. Preference for control indecision-making was not associated with CAM use.

Disclosure of CAM use This review found that patientswant an open and non-judgmental communicationabout CAM with their health care provider. Qudimatet al. [28] reported that a minority of CAM users dis-cussed the use of CAM with their health care providers.The reason for non-disclosure was that the parentsthought it was not important. Others thought theywould receive negative reactions from the physician, anda few stated it was because the doctor did not ask.Gozum et al. [33] reported that one third of the CAMusers discussed the topic with doctors and nurses andthat the majority did not. Ben-Arush [30] reported thatmore than half of the CAM users had never consultedor discussed CAM use with any of their physicians, on-cologists, or nurses. Half of the participants, who askedthe physician about CAM, reported that the physiciansencouraged CAM use or proposed a consultation with aphysician well trained in CAM. A minority decided notto use CAM even though they asked for advice. Thehealth care providers raised the issue of CAM in onlyfour cases. Singendonk et al. [38] found that in the ma-jority of the cases the parents initiated the discussionabout CAM use. The reactions from the health care pro-viders were impartial or positive, and none had experi-enced negative reactions. Magi et al. [18] reported thatmore than half of the parents reported to have told theattending oncologist about CAM. Laengler et al. [35]found that most parents spoke to a doctor about the useof CAM. This is in accordance with Fernandez et al. [31]who reported that only a few of the parents were un-comfortable discussing CAM with their oncologist. Themajority of the parents felt that their oncologist had noopinion about CAM or had not made their opinionknown. Susilawati et al. [41] found that half of the par-ents would not raise the topic of CAM if they perceivedthe doctor as sceptical. Despite caution and scepticism,doctors should facilitate an atmosphere of openness inthe consultation so that the patients feel comfortablediscussing CAM. The parents perceived that a moreopen doctor-parent communication about CAM mightenhance the doctor’s knowledge of which CAM modal-ities patients were using.According to a study by Fletcher et al. [48], parents

emphasized that the physicians should be receptive toCAM to obtain support for their choice. The health careproviders, on the other hand, were cautious about CAM

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use during conventional cancer treatment and wanted tobe informed prior to the administration of CAM. Thenthey could determine whether the modalities in questionwere appropriate. According to the parents, the physiciansadvised them not to initiate any treatment withoutinforming their health care team. Krogstad et al. [49]found that if parents asked the physicians about possibleuse of multivitamins for the child, the physicians answeredthat they should decide themselves. Ndao et al. [37]reported that the disclosure rate of CAM use among chil-dren and adolescents to the physician increased from1998 to 2008. According to the American Academy ofPaediatrics [43], clinicians should listen carefully andacknowledge the families’ concerns, priorities, and fears,including social and cultural factors. They must continueto care for the family even though they choose to useCAM. This is in line with Gilmore [45] who pointed outthe physician’s obligation to do good, and be updated onbeneficial CAM treatment options.

Informed decision-making on CAMIt is important that parents get easily accessible and reli-able information about CAM to make informed deci-sions about these modalities. Agapito and Fernandezpointed out the importance of autonomy of the familywhen making treatment decisions for children [31, 42].Adequate understandable information may empowerparents and give them freedom to act on that informa-tion [31]. Clyton [44] disclosed a story about a motherwho preferred to make decisions about CAM independ-ently after receiving information from the health careteam. Molassiotis et al. [36] argued that doctors andnursing staff should offer and discuss CAM with parentsso that they are able to make informed decisions andthat CAM literature should be available at the ward.This is in line with Tautz et al. [46] who reported that tosupport parents in decision making, the doctor needs tobuild a trustworthy and resilient relationship with theparents. They must do that without judgement. To makeinformed consent, parents should be informed about theplacebo effect and the need for conducting controlledstudies. Tautz et al. [46] proposed to make a decisionaid with scientific content because there is lots of infor-mation out there that is hard to assess for the parents.

Risk/benefit of CAM useMany parents hold the belief that in order to use CAM fortheir children, the modalities should be absolutely safe andbeneficial. A six-year-old boy with medulloblastoma experi-enced adverse effects of chemotherapy. The boy receivedacupuncture that helped relieve chemotherapy-relatedvomiting. Based on this case, Gilmore [45] discussed theclinician’s responsibility to inform the parents or patientsabout potential beneficial CAM modalities for adverse

effects of conventional cancer treatments. According toTautz et al. [46], many parents fear the consequences ofconventional cancer treatment for their child and raise theneed for information on supportive CAM modalities. Theparents in this study wanted to know whether CAM wassafe, had less adverse effects, and was equally effectivecompared to conventional medicine. According to theAcademy of American oncologists, parents should beadvised about the indirect harm that may be caused by thefinancial burden of CAM and other unanticipated costs,such as the time investment required to administer themodality [43].

DiscussionSummary of evidenceThis review demonstrates that parents of children withcancer want high quality and reliable information on CAMfrom authoritative sources provided at the hospital wheretheir children are treated. Parents want this informationprimarily from conventional health care personnel. Theyemphasize autonomy for the family when making CAMtreatment decision for their children. To have some senseof control of their children’s recovery and do everythingpossible for them, they demanded unbiased informationfrom scientific sources to act freely on that information. Inaddition, they wish an open, non-judgmental conversationabout CAM with the attending physician or oncologist whorespect their choice. To provide ethical care and preventdecline of conventional cancer treatment, conventionalhealth care providers need to update their knowledge aboutCAM, discuss risks and benefits of CAM with parents andbe aware of the philosophical underpinnings of the parents’viewpoints.

LimitationsThis integrative review must be read in light of its limi-tation, which largely concerns the search methodologysuch as the keywords and MESH term used, languagelimitations and scope. Generally, the variation in keyterms and concepts regarding parents’ information andcommunication needs on CAM may have possiblymissed some relevant papers pertinent to the study.Likewise, limiting studies to English, German, Dutch,and the Scandinavian languages could have missed use-ful papers in other languages. However, the combinationof a clearly articulated (PCC) mnemonic and searchmethods, including a research librarian in the researchteam and reviewing articles with multiple experts, aswell as applying critical appraisal tools to measure themethodological quality, contributed to counteract theobvious limitations of performing a systematic review.Another limitation of this review is the inclusion ofstudies with varying designs and study quality, whichmay have affected the study outcome. However, the

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integrative design of this review allowed for inclusion ofstudies of different designs, and studies of low qualitywere excluded from this integrative analysis.

ConclusionIn this integrative review, the communication and infor-mation needs on CAM of parents who have childrenwith cancer were systematically investigated. Of 24 in-cluded papers, 21 were of medium to high quality andtherefore of potential use to inform paediatric oncologypolicy, clinical practice, and stakeholders in the field.The five main themes identified were consistent withinthe theories of Frankel and Stub on risk communicationand information on CAM use in cancer care [52, 53],namely, information, communication, and informeddecision-making.

InformationParents wanted to know whether CAM was safe, hadless adverse effects, and was equally effective comparedto conventional medicine. However, they mostly ob-tained CAM information from less authoritative sourcessuch as family, friends, and the media. They expressed aneed for good quality information from evidence-basedsources provided at the hospital where their children re-ceived treatment (oncologists, physicians, or nurses).Many CAM modalities have not been investigated in arigorous scientific manner and information available inthe medical literature on CAM use may be inaccessibleand difficult to interpret for the lay public [31]. More-over, adverse effects of CAM and interaction with con-ventional care have been reported [54–56]. Advancestatus of the child’s disease, high risk of death at diagno-sis, and influence of family and friends are significantfactors in choosing CAM and may also mitigate againsta truly free choice [31]. Despite these concerns, few par-ents in this review perceived the quality of life of theirchild to be compromised by using CAM, in fact most ofthem felt that it had improved. The American Academyof Paediatrics [43] recommends clinicians to guide par-ents and help them seek and assess the merits of specificCAM modalities.

CommunicationParents emphasize an open communication aboutCAM with health care providers as this may avert feel-ings of frustration and powerlessness that impel fam-ilies to these modalities. By respecting the parents’choice and their needs to try everything for their chil-dren, health care providers provide ethical care. How-ever, healthcare providers may need to delve moredeeply into the philosophical underpinnings of the par-ents’ viewpoints, as fear of negative reactions from thetreating oncologist/physician was found to be a major

reason for parents to not disclose their children’s CAMuse. According to the American Academy of Paediatrics[43], clinicians should avoid dismissal of CAM in waysthat communicate a lack of sensitivity or concern forthe family’s perspective. One should avoid angry anddefensive reactions and seek ethical consultation in dif-ficult cases. The refusal of conventional cancer treat-ment in favour of CAM is rare in Western countries, asthese modalities are often used complementary [57].Paediatricians from developing countries often face thechallenge of convincing families who believe in the useof CAM alone [8].

Informed decision-makingResults from this review demonstrate that the autonomyof the family is important when making treatment deci-sions for children, as adequate understandable informa-tion may empower parents and give them freedom to acton that information [31]. It is therefore of vital importancethat health care providers build trustworthy and resilientrelationships with parents to support them in decision-making [46], something parents of children with cancerdemands, according to data from this review. Providinghealth–related information to patients and their relativescan empower them to make informed decisions concern-ing prevention, screening, and treatment [58]. It is alsoregarded as an essential element of high quality care [59].A systematic review from 2015 [59], that investigated theinformation needs independent of certain diseases inpatients and relatives in Germany, found that informationabout cancer treatment and juvenile rheumatic arthritiswere the most prominent topics of interest. Informationon CAM and nutrition was also of high interest. In a studyon the demand for CAM among cancer patients, almosthalf of the participants who were interviewed demandedconsultations about CAM, irrespective of whether theyalready used CAM [60]. Only a minority was not inter-ested in CAM.

Implication for clinical practice and further researchBased on the results of this integrative review, parentsoften receive advice from family and friends to chooseCAM as supportive care for their children with cancer,to treat adverse effects of conventional cancer treatmentor to promote quality of life and to possibly “cure” thecancer process itself. Parents express a need for highquality information on CAM from authoritative sources,preferably from healthcare professionals. These findingsstress the importance to develop evidence-based deci-sion tools on CAM use, to enable health care profes-sionals and parents of children with cancer to make wellinformed, individual decisions concerning CAM.

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AbbreviationsCAM: Complementary and alternative medicine

AcknowledgementsWe want to thank Jane Ekelund for technical support. The publicationcharges for this article have been funded by a grant from the publicationfund of UiT The Artic University of Norway.

Authors’ contributionsTS initiated the project and performed the database searches together withGO. TS and MJ performed the methodological assessment, screening of thestudies and data extraction and analysis. TS, AEK and MJ contributed toconceptualization and design of the study. They revised the manuscriptcritically for important intellectual content. All authors read and approvedthe final version of the manuscript.

Authors’ informationAEK is a language sociologist and a complementary therapist. She holds aPhD in Medical science and is trained in quantitative research design. MJholds a PhD in Medicine and has considerable expertise in understandingthe use of complementary modalities, and patient-provider communicationabout complementary therapy use. TS is trained in complementary medicine.She holds a PhD in Medical science and is specialized in both qualitative andquantitative research methodology. GO is a senior librarian and responsiblefor the training of students and researchers in literature search and Endnoteat the Institute of Health Science at UIT the Arctic University of Norway.

FundingThis research was funded by the Children’s Cancer Society Troms andFinnmark, Norway.

Availability of data and materialsNA

Ethics approval and consent to participateNA

Consent for publicationNA

Competing interestsThe authors declare that they have no competing interests.

Author details1National Research Center in Complementary and Alternative Medicine(NAFKAM), Department of Community Medicine, Faculty of Health Sciences,UiT The Arctic University of Norway, Hansine Hansens veg 19, 9019 Tromsø,Norway. 2Science and Health Library, UiT The Arctic University of Norway,Hansine Hansens veg 19, 9019 Tromsø, Norway.

Received: 11 September 2019 Accepted: 5 March 2020

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