Parents' knowledge, awareness and attitudes of cord blood ...

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RESEARCH ARTICLE Open Access Parentsknowledge, awareness and attitudes of cord blood donation and banking options: an integrative review Lisa Peberdy 1* , Jeanine Young 1 , Debbie Louise Massey 1 and Lauren Kearney 1,2 Abstract Background: For over 25 years cord blood has been used as an alternative to bone marrow for therapeutic use in conditions of the blood, immune system and metabolic disorders. Parents can decide if they would like to privately store their infants cord blood for later use if needed or to publicly donate it. Parents need to be aware of the options that exist for their infants cord blood and have access to the relevant information to inform their choice. The aim of this paper is to identify parents knowledge and awareness of cord blood donation, private banking options and stem cell use, and parent sources and preferred sources of this information. Methods: An integrative review was conducted using several electronic databases to identify papers on parentsknowledge, attitudes and attitudes towards umbilical cord blood donation and banking. The CASP tool was used to determine validity and quality of the studies included in the review. Results: The search of the international literature identified 25 papers which met review inclusion criteria. This integrative review identified parentsknowledge of cord banking and/or donation as low, with awareness of cord blood banking options greater than knowledge. Parents were found to have positive attitudes towards cord blood donation including awareness of the value of cord blood and its uses, with the option considered to be an ethical and altruistic choice. Knowledge on cord blood use were mixed; many studiesparticipants did not correctly identify uses. Information sources for parents on cord blood was found to be varied, fragmented and inconsistent. Health professionals were identified as the preferred source of information on cord blood banking for parents. Conclusions: This integrative review has identified that further research should focus on identifying information that expectant parents require to assist them to make informed choices around cord blood banking; and identifying barriers present for health professionals providing evidence based information on cord blood use and banking options. Keywords: Cord blood banking, Cord blood donation, Cord blood stem cells, Womens knowledge, Expectant parentsknowledge, Information sources Background For over 25 years cord blood has been used as an alterna- tive to bone marrow for therapeutic use in conditions of the blood, immune system and metabolic disorders [1]. Cord blood is now one of the main haematopoietic stem cell sources [2]. Umbilical cord blood banking is the process of collecting and storing umbilical cord blood, in the immediate period after the birth of a baby. Cord blood can be collected and stored either publicly or privately. Public cord blood banks operate in all developed countries, and within most developing countries. By 2014, the international cord blood banking network comprised over 160 public cord blood banks in 36 coun- tries, with over 731,000 umbilical cord blood units stored [3]. Public cord blood banks collect, transport, process, test and store cord blood units which have been altruistically donated for allogeneic use, at no financial cost to the donating parents [49]. The donated cord blood unit is not reserved for the use of the donating * Correspondence: [email protected] 1 School of Nursing, Midwifery and Paramedicine, University of the Sunshine Coast, Locked Bag 4, Maroochydore DC, QLD 4558, Australia Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 https://doi.org/10.1186/s12884-018-2024-6

Transcript of Parents' knowledge, awareness and attitudes of cord blood ...

RESEARCH ARTICLE Open Access

Parents’ knowledge, awareness andattitudes of cord blood donation andbanking options: an integrative reviewLisa Peberdy1* , Jeanine Young1, Debbie Louise Massey1 and Lauren Kearney1,2

Abstract

Background: For over 25 years cord blood has been used as an alternative to bone marrow for therapeutic use inconditions of the blood, immune system and metabolic disorders. Parents can decide if they would like to privatelystore their infant’s cord blood for later use if needed or to publicly donate it. Parents need to be aware of theoptions that exist for their infant’s cord blood and have access to the relevant information to inform their choice.The aim of this paper is to identify parent’s knowledge and awareness of cord blood donation, private bankingoptions and stem cell use, and parent sources and preferred sources of this information.

Methods: An integrative review was conducted using several electronic databases to identify papers on parents’knowledge, attitudes and attitudes towards umbilical cord blood donation and banking. The CASP tool was used todetermine validity and quality of the studies included in the review.

Results: The search of the international literature identified 25 papers which met review inclusion criteria. Thisintegrative review identified parents’ knowledge of cord banking and/or donation as low, with awareness of cordblood banking options greater than knowledge. Parents were found to have positive attitudes towards cord blooddonation including awareness of the value of cord blood and its uses, with the option considered to be an ethicaland altruistic choice. Knowledge on cord blood use were mixed; many studies’ participants did not correctlyidentify uses. Information sources for parents on cord blood was found to be varied, fragmented and inconsistent.Health professionals were identified as the preferred source of information on cord blood banking for parents.

Conclusions: This integrative review has identified that further research should focus on identifying information thatexpectant parents require to assist them to make informed choices around cord blood banking; and identifyingbarriers present for health professionals providing evidence based information on cord blood use and banking options.

Keywords: Cord blood banking, Cord blood donation, Cord blood stem cells, Women’s knowledge, Expectant parents’knowledge, Information sources

BackgroundFor over 25 years cord blood has been used as an alterna-tive to bone marrow for therapeutic use in conditions ofthe blood, immune system and metabolic disorders [1].Cord blood is now one of the main haematopoietic stemcell sources [2]. Umbilical cord blood banking is theprocess of collecting and storing umbilical cord blood, in

the immediate period after the birth of a baby. Cord bloodcan be collected and stored either publicly or privately.Public cord blood banks operate in all developed

countries, and within most developing countries. By2014, the international cord blood banking networkcomprised over 160 public cord blood banks in 36 coun-tries, with over 731,000 umbilical cord blood unitsstored [3]. Public cord blood banks collect, transport,process, test and store cord blood units which have beenaltruistically donated for allogeneic use, at no financialcost to the donating parents [4–9]. The donated cordblood unit is not reserved for the use of the donating

* Correspondence: [email protected] of Nursing, Midwifery and Paramedicine, University of the SunshineCoast, Locked Bag 4, Maroochydore DC, QLD 4558, AustraliaFull list of author information is available at the end of the article

© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 https://doi.org/10.1186/s12884-018-2024-6

family, who relinquish their rights of ownership of theblood to the banking facility [10].Private cord blood banks charge parents a fee for the col-

lection, processing and storage of their infant’s cord bloodfor exclusive autologous or family use [4, 8, 9, 11, 12]. Someprivate cord blood banks now also store cord tissue.Parents can decide if they would like to privately store

their infant’s cord blood for later use if needed, publiclydonate it, defer cord clamping to allow their infant to re-ceive optimal volumes of cord blood at birth or to dis-card the remaining cord blood with the placenta afterbirth. Parents need to be aware of the options that existfor their infant’s cord blood and have access to the rele-vant information to inform their choice. Parents’ know-ledge and understanding of cord blood banking anddonation has been reported to be low and little is knownabout their source of information on this topic and thequality of the information provided [13–15]. Thus, ac-curacy of information is difficult to assess and there islimited understanding of how parents use this informa-tion to inform their decision making about cord bloodbanking and donation.

MethodsAimIn this integrative review, we aimed to identify a) par-ent’s knowledge and awareness relating to cord blooddonation, private banking options and stem cell use; b)sources of information received, and c) parents’ percep-tions of appropriate sources and personnel to providethis information. The rationale for the integrative reviewwas to identify gaps in knowledge and to provide direc-tion for the development of antenatal education frame-works for parents in this important and evolving field ofcord blood banking and cord blood use.

MethodologyThe integrative method chosen for this review allowed forrigorous evaluation of the strength of the evidence from acombination of diverse methodologies (Whittmore andKnafi 2005), and identification of gaps in the literatureand areas for further research [16]. The five stages model[17] of problem identification, literature search, dataevaluation, data analysis, and presentation [16], was usedas a framework to guide this integrative review.

Literature searchDatabases searched included PubMed, Scopus, MIDIRS,CINAHL and Google Scholar using search terms: cordblood banking, cord blood donation, cord blood stemcells, women’s knowledge, expectant parents’ knowledge,parent/parental knowledge, sources. Publication datelimits were set between 1991 and July 2017. Cord blood

banking was reported to have commenced in 1991 [18];no papers were found on this topic prior to 1998.

Inclusion and exclusion criteriaInclusion criteria for the review consisted of original re-search studies that investigated and reported parents’knowledge, awareness and attitudes of cord blood dona-tion and banking options, written in the English lan-guage. The initial search was conducted by the firstauthor who identified the potential studies for inclusionbased on title and abstract, with all papers for inclusiondiscussed and agreed upon by co-authors.Exclusion criteria included papers not available in the

English language, discussion papers, papers reporting onknowledge and awareness of embryonic stem cells, andpapers which reported only on women’s choices and rea-sons for choice.Figure 1 details the structured search conducted, in-

cluding the search strategy and inclusion process appliedto the peer reviewed literature which was included inthis integrative review.

Data evaluationEach article was read and summarised to identify the keypoints and common themes. Following the identificationof these, the similarities and differences between studieswere compared. Critical Appraisal Skills Programme(CASP) tools appropriate for the study designs were usedto determine the quality of the studies [19]. Quantitativestudies were assessed using the CASP Cohort StudyChecklist (see Additional file 1). Qualitative and mixedmethods studies were assessed using the CASP QualitativeChecklist (see Additional file 2). No papers were excludedbecause of their validity or quality.

Data analysisA total of 31 articles were retrieved that provided descrip-tion relating to parents’, expectant parents’ or pregnantwomen’s knowledge and awareness of cord blood bankingand donation. Only one paper retrieved also exploredpregnant women’s and/or expectant parents’ knowledgeand awareness of cord tissue banking [20]. Six papers wereexcluded because they did not meet the inclusion criteria,or aims of this integrative review [11, 21–25].Thematic analysis [26] was used to identify emerging

domains and themes in the literature, with three com-mon domains identified: cord blood banking options,cord blood uses, and information sources.

FindingsThis search of the international literature identified 25papers of parents, pregnant women’s and expectant par-ents’ knowledge and awareness of cord blood bankingand donation which met the review inclusion criteria

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 2 of 21

[13–15, 18, 20, 27–46]. Studies selected for inclusion in thereview included empirical studies using qualitative (n = 5),quantitative (n = 18) and mixed methodologies (n = 2).Overall, papers exploring pregnant women’s and expectant

parents’ knowledge and awareness of cord blood donationand banking, were conducted in 15 countries: North Amer-ica and Canada [13, 15, 18, 27, 28, 31], Europe and theUnited Kingdom [14, 29, 30, 32, 34, 36, 41, 42, 46], Australia[40], Asia and the Middle East [33, 35, 37, 43–45], Africa[38, 39] and one international study involving countries inEurope, Asia, Australasia, the Americas and Africa [20].This integrative review included descriptive quantita-

tive studies predominantly using survey designs [13–15,20, 22, 30, 33–36, 39–43, 46]; qualitative studies pre-dominantly comprising focus groups and interviews[18, 27–29, 31, 37]; or mixed method approaches using asurvey design with interviews and focus groups [32, 38] todescribe knowledge, awareness and attitudes of cord blooddonation and banking options. Table 1 summarises the pa-pers included in this review.

Three domains pertaining to pregnant parents’ know-ledge, awareness and attitudes were identified: a) cordblood banking and donation; b) cord blood use; and c)cord blood information sources and preferred informa-tion sources. Cord blood banking and donation optionsencapsulated three themes: knowledge, awareness andattitudes. The second domain, cord blood use, com-prised two themes: knowledge and awareness. The finaldomain, information sources, was also divided into twothemes: actual sources and preferred sources of informa-tion on cord blood banking and donation.

Cord blood banking and donationSeven papers investigated and reported on cord bloodbanking awareness [13, 15, 31, 39–41, 46]. Four studies re-ported a high level of awareness, with around 70% of par-ticipants reporting awareness of the topic [15, 40, 41, 46].Women of lower education levels, age 25 years or less, orof an ethnic minority background were factors associatedwith less awareness of banking and donation [15, 40].

Fig. 1 Peer Reviewed Literature Screening and Inclusion Process

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 3 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

1Mathe

vic&

Erjavec(2016)

Toinvestigateaw

aren

ess,

levelo

fknow

ledg

e,attitud

esandinform

ation

sourcesof

preg

nant

wom

enandho

spitalm

aternity

staff

abou

tcord

bloo

dbanking.

Croatia

2Maternity

OPD

960wom

en96%

respon

serate

Quantitative

Questionn

aire

Overall:Preferen

ceof

voluntarydo

natio

n.One

-third

optedforprivatedo

natio

n.50%

preg

nant

wom

enwho

wereno

tplanning

onCCB

thispreg

nancymostoften

stated

insufficien

tknow

ledg

eandtoomuchpape

rwork

Know

ledgean

daw

areness:

Increaseswith

age,ed

ucation

leveland

preg

nancydu

ratio

n.Majority

unaw

areof

practicalinform

ation.

Inform

ationsources:Med

iamainsource;6%

from

Obs;

nilfrom

othe

rHPs

Streng

th:Large

samplesize

intw

oho

spitalspartly

represen

tativeof

city

popu

latio

n.Weakness:Participant

demog

raph

ics

represen

tativeof

urbanno

tge

neral

popu

latio

n,althou

ghUCBmainlype

rform

edin

urbanpo

pulatio

nsValidationof

tool

notdisclosed

2Matsumotoet

al.

(2016)

Toinvestigatepu

blic

opinionandknow

ledg

eabou

tcord

bloo

dbanking

inJordon

.

Jordon

6Maternity

Hospitals

(4Private,2Pu

blic)

Maternity

OPD

899wom

en100%

return

rate

Con

venien

cesample

Quantitative

Questionn

aire:m

ulti

choice,Likert-scale,

andcode

dshort

answ

erform

at.

Tool

develope

dand

administered

byauthors.

Overall:Po

sitivepu

blic

opinionabou

tCBB.M

ost

wantedmoreinform

ation

onCBB,especially

from

Obs.

Know

ledge&aw

areness

*69%

repo

rted

low

know

ledg

eof

CBB

&transplant

*77%

repo

rted

low

know

ledg

eof

CBD

*Highe

red

ucation&

househ

oldincome=more

likelyto

hear/discuss

CBB

with

Obs.

*Only7%

heardabou

tCBB

from

Obs

Attitudes

andopinions

*CBD

supp

ortedmore

than

CBB;H

ighe

rlikelihoo

dof

CBB

ifpresen

tedwith

future

potentialo

rrecommen

dedby

Obs

*Wom

enwith

prior

know

ledg

eabou

tCB

transplantsfoun

ditethical

/morewillingto

doCDB

Preference

andinform

ation

*66%

wantmoreCBB

inform

ation*71%

Obs

preferredinform

ationsource

Refusalrate

notrecorded

Not

allq

uestions

answ

ered

fully

3Kim

etal.

(2015)

Toassess

theknow

ledg

e&

attitud

eof

early

post-partum

wom

enin

Koreawith

regard

tostorage,

Korea

3metropo

litan

maternity

hospitals

320early

post-partum

wom

enwho

hadstored

(n=109),

donated

Quantitative

2Questionn

aires,yes/no

answ

erform

atforknow

ledg

eassessmen

t;4po

intscalefor

attitud

eform

at.Too

lsadapted

from

2previous

stud

ies

Overall:CBD

decide

dearlier

than

CBB.M

assmed

iamost

influen

tialfactorforCBD

Reason

sforCB

B/CB

D*93%

CBB

-as

insuranceforbaby.

*73%

CBD

-du

eto

unlim

ited

Lacked

thorou

ghexam

inationon

deliveryof

CBed

ucation

Someparticipants

believedthey

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 4 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

donatio

n&disposal

ofCB,&to

iden

tifyfactors

influen

cing

CBdo

natio

n.

(n=34),

discarde

d(n

=177)

theircord

bloo

d.Con

venien

ceSample

Kim

etal.(2009)andLee(2006)

uses

ofCB

Know

ledgean

dAttitudeof

CBuse

*Highe

rknow

ledg

eandpo

sitiveattitud

etowards

CBB

&CBD

increased

likelihoo

dof

CBD

CBEducation

*Wom

enwho

used

CBD

wereen

couraged

bymed

ia*44.2%

who

CBB

and12%

who

CBD

were

educated

HP

wereed

ucated

onCBB

byHPbu

tthey

wereCBB

employees

working

intheho

spitals

4Bioinformant

(2014)

Tode

term

inethefactors

involved

inexpe

ctantparents’

decision

toprivatelystore,

publiclydo

nate

ordiscard

theirinfant’scord

bloo

d.

International:

Australia,N

Z,Asia,

Europe

,USA

,Canada,MiddleEast,

SthAmerica,Mexico,

Cen

tralAmerica,

Caribbe

an,A

frica

603Expectant

parentsand

recent

parents

(with

in3years)

Samplemetho

dun

sure

Quantitative

Survey

Questionn

aire

Branched

survey.

Specificqu

estio

nsasked

ofdifferent

respon

dent

popu

latio

ns.

Overall:Moststud

yparticipants

hadno

tbe

eninform

edof

CBB

optio

nsby

theirantenatal

health

care

profession

al.

Source

ofCB

banking

inform

ation:

Obs

(35%

),Family

&frien

ds(35%

),ANC(14%

).45%:Informationfro

mCBB

was

influen

tialintheirde

cision

.30%:O

bssign

ificantly

influen

tialinparent

decision

.77%:d

idno

tCBB

asun

awareof

optio

n.62%:O

bsdidno

tmen

tionCBB.

63%:A

NCdidno

tmen

tion

cord

bloo

dbanking.

Analyticalstrategy

was

notde

scrib

ed

5Jorden

set

al.

(2014)

Toexplore

awaren

essand

unde

rstand

ingof

cord

bloo

dbanking

amon

gAustralian

wom

en,and

theeffect

ofed

ucationof

planne

dchoices

onthedisposal

ofcord

bloo

d.

Australia,

NSW

14pu

blicand

privateantenatal

clinicsandclassesin

maternity

hospitals

inmetropo

litan

(n=8),reg

ional

(n=4)

andrural

(n=2)

[includ

ed3

hospitalsthat

facilitateCBdo

natio

n]

1873

Preg

nant

wom

en(>

24wks

gestation,

low

risk)

Target

n=2050

Respon

serate=87%

PurposiveSampling

Quantitative

Self-adm

inistered

Questionn

aire:m

ulti-choice

form

at.(mod

ified

version

ofFernande

zet

al.,2003)

Overall:Most

wom

enwanted

inform

ationfro

mANCprovider

Manyrespon

dents

wereaw

are

ofCBB.C

BBed

ucationincreased

intentionto

CBB

/CBD

Awareness*71%

indicated

awaren

essof

CBB;m

orelikely

toknow

ofCBB

vsCBD

Source

ofCB

bankinginform

ation

*Hospitalp

rintinform

ation

(43%

);printmed

ia(22%

);ANC

(21%

),TV

/radio(19%

),family/relatives

(17%

)Decision

saboutCB

B

Only1Stateof

Australiasampled

;no

trepresen

tative

ofnatio

nalp

opulation

Awaren

ess,no

tknow

ledg

ewas

repo

rted

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 5 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

*After

receivingCBB

basicinform

ation,

prop

ortio

nwho

indicatedthey

wou

ldCBB

orCBD

increased

from

30to

68%.

CBBpreferencesan

dbeliefs*O

nly13%

had

been

askedabou

tCBB

orCBD

priorto

commen

cing

survey.

*93%

:CBB

andCBD

inform

ationdu

ring

preg

nancyshou

ldbe

givenby

ANCgiver.

6Alexand

eret

al.

(2014)

Tode

term

ine

awaren

essof

CB

donatio

nand

bankingam

ong

preg

nant

wom

en.

Nigeria

1tertiary

university

teaching

hospital,ANC

302Preg

nant

wom

enCon

venien

cesampling

Quantitative

Structured

Questionn

aires

Overall:Awaren

essof

CBD

andCBB

amon

gpreg

nant

wom

enis

low,w

ithmed

iathe

mainsource

ofinform

ation.

Awareness

*Only19%

awareof

CB

dueto

theabsenceof

CBB

andCBD

inNigeria.

Inform

ationsources

*Hospitals(30%

);Med

ia(39%

),Friend

s(24%

),Internet

(7%)

CBB

andCBD

notavailablein

the

Cou

ntry

somay

contrib

uteto

low

awaren

ess.

7Karagiorgo

uet

al.(2014)

Toanalysethe

attitud

esand

know

ledg

eof

Greek

citizen

swith

high

reprod

uctive

capacity

(age

d18–24years)

abou

tcord

bloo

dbanking

andtherapies.

Greece

5Greek

cities,

2Greek

island

commun

ities.

1019

Public

citizen

s;292parents

Respon

serate=100%

ofapproached

target

popu

latio

nRand

omSampling

Quantitative

Standard

anon

ymou

smulti-choice

questio

nnaires

Find

ings

from

parents

onlyrepo

rted

here

Overall:HighCBB

awaren

esslevel,with

almosthalfinform

edby

aHP

Know

ledgean

dattitudes

aboutCB

B*80%

knew

ofCBB;83%

awareof

CBuses;87%

positive

abou

tCBB

Inform

ationquality

*48%

stated

main

source

ofCBB

inform

ation,

43%

ofCBuseinform

ation

camefro

mHP.

Future

attitudes

*53%

preferredCBD

vs47%

preferredCBB

forfuture

use.

Focusedon

gene

ral

popu

latio

nof

childbe

aringage.

Did

notclearly

represen

tpreg

nant

wom

enor

expe

ctantcoup

les.

Awaren

essno

tknow

ledg

erepo

rted

.

8Vijayalakshm

i,(2013)

Toassess

antenatalm

othe

rs’

know

ledg

e

India

1region

alho

spital’s

ANC

100Anten

atal

mothe

rsNon

-probability

Quantitative

Questionn

aires

Overall:95%

had

poor

know

ledg

eof

CBB

andcollection.

Minim

alinform

ation

onknow

ledg

equ

estio

nsasked

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 6 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

regardingcord

bloo

dcollectionandstorage.

Tofindan

association

betw

eenknow

ledg

eandde

mog

raph

icson

cord

bloo

dcollection

andstorage.

Purposivesampling

*Significantassociation

betw

eenknow

ledg

escores

andde

mog

raph

ics

(live

birth,

abortio

n,de

ath,

placeof

reside

nce,

type

offamily

and

mem

bershipto

any

organizatio

n)was

foun

d*Age

,religion,

gravida,para,

education,

occupatio

n,income,ne

wspaper

andmagazine

subscriptio

nshow

edno

correlationwith

know

ledg

escore

Minim

alanalysis

offinding

spresen

ted

Survey

tool

notvalidated

9Meissne

r-Ro

loff

&Pepp

er(2013)

Toassess

theextent

ofpu

blicsupp

ort

fortheestablishm

ent

ofapu

bliccord

bloo

dbank.

SouthAfrica

1urbanun

iversity

hospital,ANC

217Mothe

rsCon

venien

cesampling

Mixed

metho

dsQualitative

Interview

anded

ucation

QuantitativeAno

nymou

sQuestionn

aires

Survey

toolsvalidated

Overall:Stud

yrevealed

positivesupp

ortfora

publicCBbank

inSouthAfrica

Willingn

essto

dona

teplacenta

andCB

*80%

supp

orted

placen

tald

onation,

while

2.5%

unwilling

todo

nate

placen

tawou

lddo

CBD

*78%

supp

orted

apu

blicbank;78%

willing

tohave

HIV

testing

forCBD

process

Know

ledgeof

CBstem

cells

*70%

unaw

areof

stem

cells

priorto

educationsession;

94%

opinionthat

stem

cells

couldtreatbloo

ddisorders

Influence

ofAg

e*You

nger

wom

enmorewillingto

donate

placen

tasthan

olde

rwom

en(84%

v77%),

morelikelysupp

ortCBD

(92%

v82%)

Cen

trespecialized

inhigh

risk

pregnancies;participants

may

have

had

bette

raccessto,

andreceived

more,

inform

ationthan

restof

popu

lation

attend

ingotherclinics

10Padm

avathi

(2013)

Toassess

stem

cellandCBbanking

know

ledg

eam

ong

antenatalm

othe

rsbe

fore

andaftera

structured

teaching

prog

ram.

Toassess

the

effectiven

essof

structured

teaching

India

1districtmaternity

hospital,ANC

30Anten

atal

mothe

rsPu

rposive

sampling

Qualitative

Structured

interviews

preandpo

sted

ucation

Posted

ucationinterviews

attend

ed7days

followinged

ucation

Overall:Results

sugg

estastructured

teaching

prog

ram

was

effectiveand

increasedANC

mothe

rs’kno

wledg

eon

stem

cells

andCB.

Pre-testKnow

ledge*57%

had

poor

know

ledg

e;43%

hadaverageknow

ledg

e.

Unclear

ofed

ucation

conten

tin

teaching

sessionandho

wknow

ledg

ewas

assessed

Unclear

ifsame

interview

questio

nsused

preand

posted

ucation.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 7 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

prog

ram

oncord

bloo

dbankingandstem

cell

know

ledg

eam

ong

antenatalm

othe

rs.

Post-testknow

ledge*70%

hadgo

odknow

ledg

e;30%

hadaverageknow

ledg

e.*M

eanpo

st-testknow

ledg

ehigh

er(21.9%

)then

pre-test

know

ledg

e(10.2%

).

11Screncietal.

(2012)

Toexploreknow

ledg

eabou

tCBstem

cells,and

preferen

cesfordo

natio

nor

privatebankingand

themotivationbe

hind

thede

cision

.

Italy

University

ofRo

me,ANC

239preg

nant

wom

enbe

fore

CB

educationgiven

Surveysdistrib

uted

n=300

Respon

serate=80%

[298

femalebloo

ddo

nors]

Con

venien

ceSampling

100mothe

rswho

haddo

nated

CB(fo

rverification

ofdo

natio

nmotivation)

Quantitative

Ano

nymou

sQuestionn

aires

Find

ings

repo

rted

forpreg

nant

wom

enon

ly.O

verall:Large

supp

ortforCBD

sugg

estsCBB

isno

tan

obstacleto

expansionof

CBD

.HPand

institu

tions

shou

ldprovideCBB

inform

ation.

Know

ledgeof

CB*93%

gene

ralkno

wledg

e;42%

prob

ability

ofclinicaluse;

31%

therapeutic

uses;58%

difference

CBD

VsCBB;

71%

donatio

ncriteria

CBDaw

areness

*95%

awareof

CBD

Inform

ationsource

*42%

Obs;25%

internet

CBchoice

(n=215)

*61%

wou

ldCBD

,56%

had

altruisticandothe

rreason

s;*7%

wou

ldCBB,

73%

wou

lddo

soto

safegu

ardfuture

*32%

wou

lddiscardCB,

logistics(28%

),lack

ofinterest(28%

)

Samplefro

mon

eInstitu

tionon

lyso

may

notb

egeneralised

Survey

tool

notvalidated

12Shin

etal.(2011)

Toinvestigatethe

know

ledg

eof

CBand

attitud

estowards

CB

bankingam

ongwell

educated

,high-po

tential

dono

rs.

Korea

1Maternity

hospital

863preg

nant

wom

enattend

ing

antenatalclasses

which

didno

tconsistof

CB

bankinged

ucation

compo

nent

Con

venien

cesamplingSurveys

distrib

uted

=1430

Respon

se=60.3%

Quantitative

Questionn

aires

Questionn

aire

adaptedand

enhanced

from

3previous

stud

ies

(Fernand

ezet

al.

2003,Perlow

etal.

2006,Fox

etal.2007)

Overall:Minim

allevelo

fknow

ledg

ewas

recorded

.Obs

have

insign

ificant

rolein

dissem

inating

know

ledg

eKnow

ledge57%

correctly

answ

ered

CB

curren

tuse

andlim

itatio

nsCB

collectionreason

*CBD

:Altruism

most

common

reason

(94%

)*Safeg

uard

for

Onlyhigh

lyed

ucated

,urbanwom

enwho

received

antenatalcare

anded

ucation

wereinclud

ed.

Results

may

not

bege

neralized

.Survey

Tool

notvalidated

.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 8 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

future

was

most

common

reason

forCBB

(75%

)*M

ostcommon

reason

forno

CBcollection

was

inconven

ience

ofconsen

tand

med

icalqu

estio

nnaire

CBDon

ationmotivation

*54%

ofCBD

were

bloo

ddo

nors

Source

ofinform

ation

*88%

received

CBD

inform

ation;

most

common

sourcesCBD

ofinform

ationwas

med

ia/in

ternet

(37%

)andbrochu

res

(31%

).*2%

and4%

learnt

abou

tCBD

andCBB

respectivelyfro

mObs.

*97%

received

CBB

inform

ation;

mostcommon

CBB

inform

ation

source

was

advertisem

ents(38%

)andmed

ia/in

ternet

(36%

).

13Maneg

oldet

al.

(2011)

Toexploretheattitud

esof

donatin

gparents

towards

publicand

privateCBbanking.

Switzerland

PublicCBbank

300Recent

Swiss,

western

andeastern

Europe

anpu

blic

CBdo

nors.

PurposiveSampling

Surveys

distrib

uted

=621

Respon

serate=48.3%

Quantitative

Standardised

anon

ymou

squ

estio

nnaire

20multi-choice

andop

enen

ded

questio

ns

Overall:Motivation

forprivateor

hybrid

CBbanking

islow

inthispo

pulatio

n.Source

ofCB

Dinform

ation

*54%

from

HP

*22%

from

morethan

1source:fam

ily,friend

sandmed

ia*34%

activelysoug

htCBD

inform

ation

CBDvs

CBBOptions

*2%

wou

ldCBB

forne

xtinfant

*27%

didno

tknow

ofCBB

*69%

optedfor

CBD

dueto

altruism

and

costof

CBB

84%

oftheop

enqu

estio

nswere

unansw

ered

Onlydo

norswho

seCBwas

accepted

forstoragewere

includ

edin

stud

yMay

notbe

gene

ralized

tothe

entiredo

norp

opulation

Survey

tool

notvalidated

14Katz

etal.(2011)

Europe

Toexplorepreg

nant

wom

en’saw

aren

ess

ofCBstem

cells

andtheir

5Europe

ancoun

tries:

France,G

ermany,Italy,

Spain,UnitedKing

dom.

1620

Preg

nant

wom

enwho

hadno

tpreviously

Quantitative

Ano

nymou

sself-directed

Overall:Stud

yrevealed

strong

preferen

ceforCBD

.Attitu

deswereno

tan

Ethn

icbreakdow

nwas

notrepo

rted

.Datacollectiondiffered

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 9 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

attitud

etowards

banking.

6urbanmaternity

hospitalanten

atal

clinicswith

over

1000

births

perannu

m(Germany=2antenatal

classesin

lieuof

clinic)

enrolledin

aCB

bankingprog

ram.

France

n=318

UKn=290

Germanyn=313

Spainn=323

Italyn=376

PurposiveSampling

multi-choice

questio

nnaire

obstacleto

CBB.

CBInform

ation

andknow

ledge

*79.4%

declared

poor

CBB

know

ledg

e.*59.6%

received

inform

ationviamass

med

iaandinternet.

*20%

received

inform

ationfro

mHP.

*91.6%

believed

they

shou

ldbe

system

aticallyinform

ed.

CBbankingchoices

*89%

wou

ldcollect

CB;

11%

wou

lddiscardCB;77%

wou

ldCBD

;12%

wou

ldCBB;12%

wou

ldstore

inhybrid

bank

Choice

forCB

D*59%

said

altruism

;30%

believe

adu

tyto

donate

*24%

wou

ldchange

birthho

spitalin

orde

rto

beableto

CBD

Choice

forCB

B*12%

wou

ldCBB;

51%

ofthese

wom

enwou

lddo

sodu

eto

possible

future

med

ical

research

therapies

*16%

wou

lddo

sofor

insurancereason

s

acrosssites:German

questionnairesconducted

inantenatalclasses

notclinicsas

inother4

countries

CBB

notavailable

in3coun

tries

attim

eof

stud

y(France,ItalyandSpain)

Know

ledg

eno

taw

aren

essrepo

rted

.Survey

tool

validated

15Suen

etal.

(2011)

Toassess

know

ledg

eof

privatecord

bloo

dbankingam

ong

preg

nant

wom

en

Hon

gKo

ng2largepu

blicmaternity

units

1866

Preg

nant

wom

enaccessing

antenatalclinic.

Surveysdistrib

uted

=2000

Respon

serate=93.3%

Con

venien

ceSampling

Quantitative

Cross-sectio

nal

self-administered

questio

nnaire

Survey

validated

Overall:Stud

yrevealed

inadeq

uate

know

ledg

eon

CBB

anduse.

Und

erstan

ding

*78.2%

repo

rted

noun

derstand

ingof

likelihoo

dCBB

use

Awareness

*Only58.5%

wereaw

are

ofCB

useforchildho

odleukem

iaKnow

ledge

*20.3%

knew

ofCB

availabilityfro

mpu

blic

CBbanks

Samplinglim

itedto

publicpatients

who

didno

thave

theop

tion

ofCBB

unless

indicatedfor

med

icalreason

s.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 10 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

Preferredsource

ofCB

Binform

ation

*44%

stated

Dr.;32%

stated

CBB

staff

*22%

stated

unsure

who

toreceiveinform

ation

from;7%

stated

N/M

Ws

Governm

entinvolvem

ent

*89%

wantedmore

prom

otionanded

ucation

onCBB

16Salvaterra

etal.

(2010)

Toanalyzeknow

ledg

e,compreh

ension

,opinion

s,attitud

esandchoices

relatedto

cord

bloo

ddo

natio

nof

preg

nant

wom

en,futureparents,

dono

rs,m

idwives,

obstetricians/gynaecolog

ists.

Tocompare

preferen

ces

ofpu

blicversus

private

banking.

Italy

Hospital,commun

ity&academ

icsector

participation

Preg

nant

wom

en,

future

parentsand

dono

rs(n

=30)

32antenatal

health

care

providers

consistin

gof:10

commun

itymidwives

12ho

spitalm

idwives

10ob

stetricians

(pub

licandprivate)

Multip

lesampling

metho

ds

Mixed

metho

dsusingparticipatory

approach

with

establishm

entof

ataskforceand

publicmultid

isciplinary

roun

dtable

Focusgrou

ps;

(max.n

=10

participants,led

by2psycho

logists)

Self-adm

inistered

questio

nnairesat

completionof

focusgrou

ps(n

=20)

Find

ings

repo

rted

from

preg

nant

wom

en,future

parentsanddo

nor

perspe

ctives:

Overall:

*CBD

considered

agift

ofmoralandsocialvalue;

Participantswou

ldCBD

for

altruisticpu

rposes.

*CBB

was

associated

with

egoism

andfraud

.*100%

wantedmore

inform

ationandclear

proced

ures

onCBB.

*100%

stated

HPshou

ldbe

educated

onCBB/CBD

andinform

future

parents

durin

gpreg

nancy

*70%

(14/20)repo

rted

poor

know

ledg

eof

CBD

Includ

edon

lythose

inan

urbansetting

anddidn

’tinclud

eanyminority

grou

ps.

Few

know

ledg

equ

estio

ns;m

ost

opinionbased.

Smallsam

ple

sizesallowed

for

limitedbe

tween

grou

pcomparison

sResearchersde

velope

dow

nassessmen

ttool

Know

ledg

eno

treported

17Ru

cinskiet

al.

(2010)

Toexploretheknow

ledg

e,attitud

es,b

eliefsand

practices

regarding

cord

bloo

ddo

natio

nam

ongHispanicand

non-Hispanicblackwom

en.

UnitedStates

ofAmerica

1Com

mun

ityHealth

Cen

treand1Com

mun

ityHospitalinChicago

,Illino

is

41Hispanicand

non-Hispanic

preg

nant

black

wom

en,o

rwho

hadgivenbirth

inthelast12

mon

ths,

>18

yrs.,had

received

antenatal

care

bythe2n

dtrim

ester;didno

thave

anyreligious

objections

todo

natio

n.Pu

rposivesampling.

Qualitative

5Focusgrou

ps:

1Hispanic(Eng

lish)

n=5

1Hispanic(Spanish)n=9

3no

n-Hispanicn=8/9/10

Overall:Mostno

taw

areof,

whatitinvolved

,orthe

valueof,C

BDfortreatm

ent

andresearch.Participants

believedthat

Drsprovide

CBD

inform

ation

Initialanalysisdidno

treveal

strong

ethn

icdifferencein

know

ledg

eor

attitud

estowards

CBD

.Know

ledge/Aw

areness

*Participantswho

repo

rted

awaren

essof

saving

CB,

was

inreferenceto

CBB

notCBD

.*Participantsrepo

rted

confusionbe

tween

CBD

andCBB

optio

ns.

Inform

ationneeds

andsources

*Tho

sewho

hadbirthe

d

Very

specific

inclusioncriteria

soresults

could

notbe

gene

ralized

tothewider

popu

latio

n.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 11 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

expressedconcernthat

they

had’tbe

eninform

edby

HPon

CBD

optio

n*M

anywantedCBD

info

from

theirDr.du

eto

trust/respectin

Dr.be

ing

source

offactualinformation

andpe

rceivedability

toansw

erqu

estio

nson

topic.

*Som

eparentsrepo

rted

Dr.

indifferenceon

topicandDr.

failure

tospen

dtim

eprovidinghe

alth

related

answ

ersto

questio

nswhich

redu

cedfaith

that

Drs

werereliablesource

ofinform

ation.

18Palten&

Dud

enhausen

(2010)

Toevaluate

thecorrelation

betw

eenGerman-spe

aking

wom

en’sknow

ledg

eof

cord

bloo

dbankingandtheirlevel

ofed

ucation.

Germany

(Perlow,2006)

1ob

stetric

hospital

inBerlin,

3ANC

300Preg

nant

wom

enover

theageof

18yearsin

their3rdtrim

ester

Surveysdistrib

uted

=313

Respon

serate=96%

Quo

taSampling:

togain

comparative

numbe

rto

Foxet

al.

(2007)

stud

y

Quantitative

Multi-choice

respon

seQuestionn

aire

Overall:Wom

enwere

poorlyed

ucated

abou

tCBstorageusefulne

ss,

costsandmetho

ds.

Education

*35%

welledu

cated

(University

degree).

*Wom

enwith

high

ered

ucation

levelh

adread

moreCBB

inform

ation

Know

ledge

*50–65%

were

unaw

areof

CB

treatableillne

sses

Source

ofCB

inform

ation

*74%

:reading

material

andcommercials.

*59%

:materialb

yprivateCBB.

*26%

:pub

licCBD

banks.

CBdiscussio

nwith

obstetrician

*5%

discussedit

with

Obs;1%

haditraised

byObs

Lang

uage

interpreted

tool

used

byFoxet

al.(2007),

althou

ghcultu

ral

andhe

alth

system

differences

make

comparison

sof

finding

sdifficult.

Awaren

essno

tknow

ledg

erepo

rted

.

19Dinc&Sahin

(2009)

Tode

term

inepreg

nant

wom

en’sknow

ledg

eand

attitud

estowards

stem

cells

andcord

bloo

dbanking

inInstanbu

l.

Turkey

2Anten

atalclinics:

1in

aUniversity

Med

icalCen

tre,

1in

aFamily

Planning

Cen

tre.

334Preg

nant

wom

enaccessingantenatal

clinicin

Instanbu

l.Con

venien

ceSampling

Qualitative

Exploratoryde

scrip

tive

stud

yof

Interviews:

yes/no

andop

enen

dedqu

estio

ns

Overall:Wom

enwith

ahigh

ered

ucationhad

high

erlevelsof

know

ledg

eabou

tCBandstem

cells.

Mosthadalack

ofknow

ledg

eon

thetopics

andwantedmore

inform

ationfro

mHP.

Select

sample

ofwom

enin

2antenatalclinicsin

1locatio

nso

may

notbe

gene

ralized

totherestof

thepo

pulatio

n.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 12 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

Know

ledge

*Only26.9%

awareof

CB

andstem

cells.

Source

ofCB

inform

ation

*72%

stated

med

ia;

28%

stated

Obs

Preferredsource

ofinform

ation

*79%

stated

Obs;

21%

stated

N/M

WMainreason

sforCB

B*48.9%

stated

possiblefuture

need

*22%

itisbe

neficial;

10%

future

regret

*8%

insuranceforchild

Mainreason

sagainstCB

B*68.7%

not

necessary;21%

limitedinform

ation

Awaren

essno

tknow

ledg

erepo

rted

.

20Foxet

al.

(2007)

Toevaluate

patient

unde

rstand

ingof

cord

bloo

dbanking.

UnitedStates

ofAmerica

1largeObstetric

Hospital,New

York

with

access

topu

blic

andprivateCB

banking,

ANC

325preg

nant

wom

enQuo

tasampling

Surveysdistrib

uted

=724

Respon

serate=44.9%

Quantitative

Ano

nymou

smulti-choice

questio

nnaire

Overall:Wom

enhadvery

poor

unde

rstand

ingof

CB

uses

andbanking.

Educationstatus

94%

completed

unde

rgradu

atede

gree

58%

completed

post

graduate

degree.

Awareness

*54.4%

unaw

areof

med

icalcond

ition

streatablewith

CB.

MainCB

Inform

ationsource

*86.5%

:private

CBB

literature

*29.2%

:Pub

licCBD

banksliterature

*36.9%

:Discussionwith

Obs

thou

ghno

tstated

who

initiated

theconversatio

n.Reason

sfor

privateCB

B*83%

:protect

infant

infuture

Survey

cond

ucted

inearly

preg

nancy.

Only45%

ofsurveyscompleted

somay

indicate

abias

ofresults.

Stud

ydidno

texam

inetheextent

ofthewom

en’s

know

ledg

eof

CBB.

21Perlo

w(2006)

Tode

term

inepatients’

know

ledg

eof

cord

UnitedStates

ofAmerica

425Preg

nant

wom

enattend

ingforantenatal

Quantitative

Con

venien

ceSampling

Overall:Patients

poorlyinform

edAdd

ressed

private

CBB

only.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 13 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

bloo

dbanking.

1ObstetricMed

ical

Cen

tre

Phoe

nix,Arizon

a.

consultatio

n,or

ultrasou

nd.

Con

venien

ceSampling

2.partq

uestionn

aire:

1.Awaren

ess

157(37%

)un

aware

ofCBbanking.

Com

pleted

part1on

ly.

2.Kn

owledg

e268(63%

)completed

part1&

2.

abou

tCBB

(74%

,315/425).

Few

receive

CBed

ucation

from

HP.Lack

ofknow

ledg

eand

expe

nseCBB

barriers.

Awarenessof

CBB

*63%

wereaw

are.

Remaind

erexclud

edfro

mpart2of

stud

y.*W

omen

with

lower

educationless

likelyto

beaw

arethan

wom

enwith

aUniversity

degree

(22%

v78%).

*Wom

enun

derage25

less

likelyto

beaw

are

(53%

v68%).

*Ethnicwom

enhadless

awaren

essthen

Caucasian

wom

en.

Know

ledgeof

CBB

*74%

stated

minim

ally

inform

ed.

*3%

stated

extrem

ely

know

ledg

eableon

thesubject.

Source

ofCB

Binform

ation

*53%

inform

edby

med

ia;17.5%

inform

edby

Dr.;

8.2%

inform

edby

othe

rHP.

Barriersto

CBB

*Cost(30%

);low

know

ledg

e(31%

),misinform

ationon

who

could

useCB(50%

).

Con

ducted

inon

elocatio

non

lyso

may

notbe

represen

tativeof

thege

neralp

opulation.

Lack

ofcultu

ral

diversity,small

numbe

rsof

Native

andAfricanAmericans

inthesurvey.

Lasttw

oqu

estio

nsof

thesurvey

wereno

tcompleted

byallp

articipants.

22Danzeret

al.

(2003)

Toevaluate

the

attitud

esof

mothe

rstowards

cord

bloo

ddo

natio

nfortherapeutic

use6mon

ths

postdo

natio

n.

Switzerland

1University

Hospitalw

itha

CBcollectioncentre

78Wom

en6mon

ths

post-partum

who

donatedcord

bloo

dPu

rposiveSampling

Respon

serate=59.5%

(Totalsurveys

distrib

uted

=131)

Quantitative

Survey

Standardized

anon

ymou

squ

estio

nnaires

Multi-choice

form

at,w

ith1op

enen

dedqu

estio

n.

Overall:AHigh

degree

ofsatisfaction

with

CBD

.Respon

sesregardingCB

D100%

believedCBD

was

ethical

*96.1%

wou

ldCBD

again

*74.8%

emotionally

satisfiedabou

tCBD

Original

source

ofCB

Dinform

ation

Wom

enfro

mon

eInstitu

tionon

lyweresurveyed

.Atotalo

f131

weresent

surveys

however,40.5%

did

notrespon

d.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 14 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

*81.3%

from

theirDr.;18.7%

from

med

iaandfrien

ds.

*Nosign

ificant

associationbe

tween

inform

ationsource

andde

cision

todo

nate

again.

Ope

nen

ded

questio

ncommen

ts*8

wom

ensupp

orted

impo

rtance

ofCB

collectioncentres;

5expressedconcern

forim

prop

eruse,

2expressed

concerndo

nated

CBmay

not

beavailable

forow

nchild.

23Fernande

zet

al.

(2003)

Toexam

inepreg

nant

wom

en’sknow

ledg

eandattitud

esregarding

CBbanking,

which

maybe

used

inthede

velopm

ent

ofpo

liciesand

proced

ures

for

publicandprivate

CBbanking?

Canada

1Region

alWom

en’sHospital

443Englishspeaking

preg

nant

wom

enattend

ingantenatalclinic.

Respon

serate=68%

(Totalsurveys

distrib

uted

=650)

Con

venien

ceSampling

Quantitative

Questionn

airesde

velope

dby

Autho

rs

Overall:Mostwom

enweresupp

ortiveof

CBD

fortransplantation

andresearch.

Know

ledge

*72%

repo

rted

poor

orvery

poor

CBB

know

ledg

e(n

=310)

25%

overestim

ated

risk

ofachild

requ

iring

astem

celltransplant

PreferredCB

educationsource

*66%

HP;68%

Dr.;70%

ANC.

CBBankingoption

*14%

wou

ldchoo

seCBB

dueto

ago

odinvestmen

t.*86%

wou

ldchoo

seto

CBD

due

toaltruism

.

Highprop

ortio

nof

participantswere

university

orcollege

educated

.Littleethn

icdiversity

ingrou

p.Noestablishe

dpu

blicor

private

CBbanksin

thearea

atthetim

ethestud

ywas

cond

ucted.

24Sugarm

anet

al.

(2002)

Toevaluate

the

inform

edconsen

tprocessforcord

bloo

ddo

natio

n.

UnitedStates

ofAmerica

2CBCollectioncentres

associated

with

aPu

blicCB

Bank.

170Preg

nant

wom

enin

the3rdtrim

ester

who

hadconsen

ted

tocord

bloo

ddo

natio

nCon

venien

ceSampling

Qualitative

Teleph

oneinterviews

Overall:Wom

enweresatisfied

with

consen

tprocess(96.9%

),most(98.8%

)wou

lddo

nate

again,

thou

ghdidno

tseem

toknow

abou

talternatives

toCBD

.Other

respon

sesto

CBDprocess

*Only32.9%

unde

rstood

they

hadtheop

tionno

tto

have

CBcollected

.

Samplelim

itedto

thosewho

had

consen

tedto

CBD

at1pu

blicbank.

Und

erstanding

ofCBD

anduses

may

differin

wom

enwho

choseno

tto

CBD

and

whe

reCBB

is

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 15 of 21

Table

1Overview

ofpape

rsinclud

edin

thereview

(Kno

wledg

e,aw

aren

ess,attitud

e,inform

ationsource,p

ublic

donatio

n,privatebanking)

(Con

tinued)

No.

Autho

r/Year

Aim

Cou

ntry

Setting

SampleInclusion

Design

Find

ings

Limitatio

ns

*Only55.3%

unde

rstood

the

optio

nof

CBB.

78.8%

incorrectly

thou

ghtthey

coulddo

nate

CBto

aspecificrecipien

t.Incorrecten

dorsem

entof

CBD

*Diagn

osisof

gene

ticdisease

ofinfant

(92.9%

)andmothe

r(88.2%

)*Diagn

osisof

infectious

diseaseof

infant

(88.2%

)andmothe

r(87.1%

)*Protectionfor

infant

(48.8%

)

anop

tion.

Interviewswere

cond

ucted1mon

thpo

st-partum

soinform

ationpreviously

conveyed

and

unde

rstood

may

have

been

forgotten.

25Sugarm

anet

al.

(1998).

Tolearnabou

tpreg

nant

wom

en’s

concerns

regarding

CBcollection

andbankingin

orde

rto

establisha

compreh

ensive

recruitm

ent

andinform

edconsen

tprocessfordo

natio

n.

UnitedStates

ofAmerica

3antenatalclinics

(1private,2pu

blic)

affiliatedwith

CB

collectioncentres.

19Preg

nant

wom

enin

their2n

d&

3rdtrim

ester

Purposivesampling

Qualitative

Focusgrou

pdiscussion

sOverall:100%

indicated

they

lacked

sufficien

tor

substantialp

riorknow

ledg

eof

CBtechno

logy.

Desire

formoreinform

ation

abou

tcollection,

storage

anduseof

CB,espe

cially

differencebe

tweenCBB

andCBD

was

iden

tified.

CBeducation

*100%

believedin

impo

rtance

ofCBB

educationinclud

ing

collection,

storageanduse.

*Earliertheed

ucationwas

provided

prom

oted

afeeling

ofchoice.

*CBed

ucationshou

ldbe

invario

usform

ats:clinic

pamph

lets/posters,p

aren

ting

magazines,information

hotline

s,television

advertisem

ents&repo

rts,ANC.

Safetyof

motheran

dinfant

*Impo

rtantto

inform

wom

enthat

CBcollectiondo

esno

talterthebirthprocess.

Reason

sforCB

D*Altruism

was

mainreason

*Influen

ceof

othe

rsmay

give

causeformore

likelyCBD

.

Find

ings

context

specific,no

table

tobe

gene

ralized

tobroade

rpo

pulatio

n.

Key:CB

Cord

bloo

d,CB

BPrivatecord

bloo

dba

nking,CB

DPu

bliccord

Bloo

dDon

ation,Obs

Obstetrician,N/M

WNurse/M

idwife,D

rPh

ysician,HPHealth

Profession

al,A

NCAnten

atalClass,OPD

Outpa

tient

Clinic

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 16 of 21

Three papers reported low awareness of cord bloodbanking and donation [13, 31, 39]. Participants who hadheard about cord blood banking expressed considerableconfusion between public and private banking options[31], with cord blood donation having the least aware-ness reported in North America [13, 31].Thirteen studies reported on cord blood banking and do-

nation knowledge [14, 15, 18, 27, 28, 32–34, 37, 41, 43–46],with most studies assessing knowledge by participantself-report, as opposed to knowledge being measured by as-sessment of associated facts. Ten studies identifiedparent-reported suboptimal knowledge about collectionand storage options for cord blood [15, 18, 27, 28, 32–34,37, 43, 44], and of parents being minimally informed aboutcord blood banking and donation options [15, 28, 32–34,37, 44, 45].Exceptions to these low knowledge findings were re-

ported by four studies, with more than 70% of participantsof three studies reported to be knowledgeable about cordblood banking and donation [14, 41, 46]. Findings fromearly postpartum women (n = 320) surveyed by Kim et al.(2015) on their knowledge and attitudes of storage, dona-tion and disposal of cord blood suggested that a high levelof knowledge about cord blood was associated withwomen opting for cord blood donation.Ten papers investigated parents’ attitudes towards

cord blood banking and donation with samples includingpregnant women, expectant parents and new parents[14, 28, 29, 32, 34, 35, 41, 42, 44, 46]. Overall, the find-ings from these studies indicated that parents were moreinclined to support donation than private cord bloodbanking [14, 28, 32, 34, 35, 42, 45]. Key themes of parentattitudes towards donation and storage of cord blood in-cluded altruism, ethical practice, duty to society and in-surance for the baby. Only one paper reported lowregard for altruism or public benefit surrounding cordblood donation, however this may be attributed to lackof awareness of cord blood donation as public cordblood banking was not available at the time of thisstudy’s data collection [45].Several papers found parents to be positive towards

cord blood banking [29, 41, 44, 45]. Reasons given forprivate cord blood banking included insurance for theirbaby [44], the cord blood may be needed in the futureand they may have future regret of not storing theirbaby’s cord blood [29].

Cord blood useFive papers reported on cord blood use awareness[13, 31, 38, 41, 46], with only one paper reporting highawareness, which included participants who were alreadyparents [41]. Three studies used mixed methods andreported that considerable proportions of the parent

population had relatively low awareness relating to uses ofcord blood [13, 31, 38].Nine papers reported knowledge of cord blood use

[13, 27–30, 33, 35, 36, 46] and knowledge deficits wereidentified. Treatment of blood cancers was the mostcommonly known use of cord blood [13, 29, 30, 35],with over 50% of participants correct in their responsesin studies by Fox and colleagues (n = 70%) [14] and Pal-ten and Dudenhausen (50–65%) [26]. Limited knowledgewas reported for other uses [13, 30, 36], including thelikelihood of use of cord blood stem cells [28, 33]. Mati-jevic and Erjavec (2016) reported 95% of participants intheir study self-reported knowledge of cord blood treat-ments as either insufficient or basic [46].

Cord blood informationSource of informationSource of cord blood banking information was investi-gated by 16 of the reviewed papers [13–15, 20, 28, 30, 31,34–36, 39, 40, 42, 44–46]. The main sources of parent in-formation were hospitals; health professionals, includingantenatal classes; media and magazines; cord blood banks;and family and friends. Table 2 summaries the sources ofinformation reported in the studies reviewed.Six authors reported health professionals and/or ante-

natal classes were the main source of information on cordblood banking [14, 20, 36, 41, 42, 44], with a further twoauthors reporting these were the second most commonsources [39, 40]. Health professionals, particularly doctors,were identified as important informers of cord bloodbanking options [20, 36, 42, 45]. Receiving this informa-tion from a health professional significantly influenced theparental decision to store cord blood [20].Four authors reported low numbers of participants

had received cord blood information from health profes-sionals [15, 34, 35, 45, 46], and a further study foundthat participants had to actively enquire in order to re-ceive information on cord blood donation [14].Print and electronic (including internet) media and ad-

vertising were the main information source of cord bloodbanking reported in six studies [15, 30, 34, 35, 39, 46], andwas the second most common source in two further pa-pers [36, 40] after health professionals [36] and privatecord blood banks [40].Four studies listed cord blood banks as a source of

cord blood banking information [13, 20, 30, 40], withJordens and colleagues [36] reporting this was the mainsource for their participants. Private banking informa-tion was reported as a more common source of informa-tion compared to public banks [13, 30]; one studyreported that almost half of their sample indicating thatinformation from private cord blood banks was influen-tial in their decision to store cord blood [20].

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 17 of 21

Six reports noted family and friends to be a source of in-formation [14, 20, 36, 39, 42, 47], though only one paperstated this was their main source [20]. Three studies com-bined ‘family, friends and media’ as a single informationsource category [15, 28, 32]. These studies reported similarfindings with approximately 20% of participants identifyingthis category as a source of cord blood banking informationand an influence in their decision-making [15, 32, 38].

Preferred source of informationFive papers reported on participants preferred source ofinformation on cord blood banking and donation [28,29, 31, 33, 40, 45]. Four studies listed antenatal healthprofessionals, including antenatal classes, as the mostimportant and preferred source [29, 31, 33, 40, 45]. Onlyone paper reported cord blood banks as a preferredsource of information [33]. Table 2 displays the preferredinformation sources reported by participants of studiesincluded in this review.

DiscussionCord blood banking and donation has been an optionfor parents for the past quarter century, yet an under-standing of knowledge and awareness of these options,and consistency of information provided to parents, re-mains low. This is the first integrative review to exploreparents’ knowledge, awareness and attitudes towardscord blood banking and donation, and parent sources,and preferred source, of information on this topic.This integrative review identified parents’ knowledge

of cord banking and/or donation as generally low [18,27, 28, 32–34, 37, 44–46]. Higher knowledge levels wereidentified where participants had previously donatedcord blood and where participants had been providedwith information on these options by their antenatalhealth care provider or in antenatal classes [14, 41, 44].This finding highlighted the importance of providingparents with this information as part of routine antenataleducation. Overall, awareness of cord blood banking op-tions was found to be higher than knowledge in this in-tegrative review [15, 41, 47]. Like knowledge findings,this may be attributed to the availability of informationprovided at birthing facilities, and the level of educationof participants [15, 40, 41].Positive attitudes towards cord blood donation among par-

ents were found, with the option considered to be an ethical[42] and altruistic choice for parents [14, 28, 34, 35, 41]. Thiscould be indicative that cord blood donation has a moral as-sociation, and this finding may be important when healthprofessionals discuss this option with parents as they mayfeel pressure or an obligation to choose this option. Positiveattitudes towards private cord blood banking were alsofound, with only one study reporting negative findings [32].Participants who chose to privately store their infant’s cord

blood did so because they viewed this option as an invest-ment for future use, insurance or protection for their childor family [28, 29, 34, 35, 44]. The desire of parents to do thebest for their children and provide for their future may influ-ence their interpretation of the importance of the scientificbenefit on storing cord blood stems cells for future healthprotection, and illustrates the emotional element frequentlyattached to this option.Knowledge on cord blood use among study participants

was mixed. Over 50% of participants in many of the studiescould not correctly identify uses of cord blood [13, 18, 27,29, 30, 33, 36, 46]. This lack of knowledge emphasises theuncertainty about the source and the quality of the infor-mation being provided. When knowledge was self-reportedby participants, general uses for cord blood was higher thanspecific uses [29, 30, 36], with treatment of blood cancersthe highest correct response reported [14, 26].Awareness among parents of the value of cord blood and

cord blood uses was found to be less than knowledge levelsof cord blood value and use. We identified that the provisionof information by health professionals greatly influencedawareness of the value of cord blood and its’ potential uses.This finding again emphasises the need for information tobe provided as part of routine antenatal care.In this integrative review, we found that there was in-

consistency in information provided to parents aboutcord blood banking and cord blood use. This inconsist-ency created awareness and knowledge deficits and argu-ably prevents parents from making informed choices.This is an important finding; in Australia, the Healthand Safety commission have identified involving con-sumers in health care choices is associated with betterclient experience and promotes client centered care [48].Information sources for parents on cord blood was found

to be varied, fragmented and inconsistent [14, 20, 35, 40].This inconsistency of information is concerning because forparents to make informed choices about cord blood bank-ing or donation they need appropriate, relevant, objectiveinformation that is accurate, valid, regulated and based onthe latest evidence in a variety of consumer-friendly formatsthrough trustworthy sources [49].Health professions were identified as the preferred

source of information on cord blood banking for parents[28, 29, 31, 33, 40, 45]. The views of clients are amongmany factors that influence change to health services[50] and it is imperative that information on cord bloodbanking and donation is considered as part of routineantenatal education for parents.

Strengths and limitations of this studyThe integrative approach chosen for this review of par-ent knowledge and awareness of cord blood banking, do-nation and cord blood banking, including sources andpreferred sources of information, allowed for the

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 18 of 21

inclusion of a diverse range of qualitative, quantitativeand mixed methods studies with participant samplesfrom nations representing most world continents. Des-pite the literature review being extensive, inclusive ofpublished studies meeting eligibility criteria since cordblood banking became available in 1991, this integrativereview was limited to studies published in the Englishlanguage only. Different terminology and sampling de-scriptions (pregnant women and / or parent / couples’knowledge) used across studies, and a lack of clarity andconsistency within studies relating to study aims andmethods reported, limited interpretation of some studyresults.The papers included in this review varied significantly

in sample size (n = 30 to 1873), but this may have beendriven by the research approach chosen [18, 31, 32, 37].Survey tools to measure knowledge, awareness and atti-tudes were poorly described or not validated in somestudies [14, 32, 35–37, 43, 46], with only two studiesusing the same (or modified version) tool [13, 30].Several papers reported on awareness, not knowledge,

as indicated in their title or abstract [29, 30, 32, 40, 41]or on knowledge, when awareness was indicated [34].The findings of some studies were context specific andmay not be generalised [14, 18, 31, 35–37], or partici-pants did not have access to both cord blood bankingand donation which may have influenced study findings[15, 27, 28, 33, 34, 39].

Implications for practice, education and researchIn this integrative review, inconsistencies, and uncertaintyin knowledge and awareness that parents have regardingcord blood use and banking options have been highlighted.These findings are indicative of the need for expectant par-ents to be informed of the cord blood banking optionsavailable to them by their antenatal care providers and/orat their birthing facility so that they can make an informeddecision about what option is appropriate for their familycircumstances. Maternity care policy and practice evolvewith the emergence of new research evidence [49]; healthservices therefore need to be responsive to client and con-sumer input and needs [48] and involve clients in healthcare and informed decision making.

ResearchParent knowledge of cord blood banking options and cordblood use has been identified as poor. This integrative re-view identified that parents have a lack of knowledge aboutthe options of cord blood banking and donation, and theuses of cord blood. There is lack of clarity and consistencyin the information provided for parents on cord bloodbanking, donation and cord blood use. Future research isneeded to explore health professionals’ knowledge of, andattitudes towards, cord blood banking, donation and cord

blood use and how this impacts on the information thatthey provide to expectant parents in their care. The optionof cord blood banking and donation has been available toparents for over 25 years so it is timely to investigate wherethe gaps in health professionals’ knowledge lie.

PracticeInformation on cord blood banking and cord blood use isnot a standard element of antenatal education and this isconcerning because parents require this information tomake a fully informed choice of their options regarding theirinfant’s cord blood following birth. We argue that there is aneed for health professionals to provide accurate andevidence-based information to parents. This integrative re-view has demonstrated that information provision to expect-ant parents by health professionals on the topic of cordblood banking and donation is not a consistent part of ante-natal education. Research is needed to identify and under-stand barriers to the information provision to parents oncord blood banking and donation, and why this importanttopic is not yet a standardised part of antenatal education.

EducationHealth professionals are the parent preferred source ofcord blood banking information. It is vital that healthprofessionals are educated and informed of all aspectsand elements of cord blood banking to enable them toprovide appropriate information to parents. We arguethat cord blood banking should be incorporated intohealth professional curricula and antenatal education.

ConclusionCord blood banking is complex and often poorly under-stood by parents and health professionals. This integra-tive review makes an important contribution to the bodyof knowledge in this field by identifying knowledge,highlighting gaps and suggesting direction for future re-search, practice and education in relation to cord bloodbanking and donation and cord blood use.Significant gaps in parents’ knowledge and awareness

of cord blood banking have been identified in this reviewof current evidence. This is an important topic and onethat requires parents to make informed and rationalechoices. For this to occur, information provided needs tobe accurate, objective valid, timely and appropriate, andsupplied by parent preferred sources. As identified inthis integrative review, currently this is not the case.This integrative review has identified that further re-

search should focus on identifying the information ex-pectant parents would like to receive to assist them tomake an informed choice around cord blood bankingand to identifying the barriers to health professionalsproviding this evidence-based information on cord blooduse and banking options.

Peberdy et al. BMC Pregnancy and Childbirth (2018) 18:395 Page 19 of 21

Additional files

Additional file 1: Appraisal of Quantitative studies by study designusing CASP tools. CASP tool assessments of Quantitative studies listedchronologically. (DOCX 15 kb)

Additional file 2: Appraisal of Qualitative studies by study design usingCASP tools. CASP tool assessments of Qualitative studies listedchronologically. (DOCX 14 kb)

Availability of data and materialsNot applicable to this integrative review of published studies.

Authors’ contributionsAll authors conceptualized the review and selected the review methodology.LP conducted the literature search, identified articles for inclusion andanalysis, and drafted the initial manuscript. JY, DM and LK checked thesearch strategy, reviewed included articles, and contributed to thecontributed to critical revisions of the manuscript. All named authorscontributed sections of the text and approved the final manuscript.

Ethics approval and consent to participateNot applicable.

Consent for publicationNot applicable.

Competing interestsThe authors declare that they have no competing interests.

Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.

Author details1School of Nursing, Midwifery and Paramedicine, University of the SunshineCoast, Locked Bag 4, Maroochydore DC, QLD 4558, Australia. 2Sunshine CoastHospital and Health Service, Maroochydore DC, Queensland, Australia.

Received: 10 August 2017 Accepted: 25 September 2018

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