Technology-based approaches to patient education for young people living with diabetes: a systematic...

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Pediatric Diabetes

Review Article

Technology-based approaches to patienteducation for young people living withdiabetes: a systematic literature review

Cooper H, Cooper J, Milton B. Technology-based approaches to patienteducation for young people living with diabetes: a systematic literaturereview.

Helen Coopera,Jessie Cooperb andBeth Miltonb

aFaculty of Health and Social Care,University of Chester, Chester, UK; andbFaculty of Medicine, University ofLiverpool, Liverpool, UK

Key words: educational technology,young people, diabetes mellitus,systematic review

Corresponding author:Prof. Helen Cooper,Department of Community and ChildHealthFaculty of Health and Social CareWestminster BuildingUniversity of ChesterChester, CH1 4BJUK.Tel: 01244 511624;e-mail: [email protected]

Submitted 24 October 2008. Acceptedfor publication 3 February 2009

The aims of this paper were to report on a systematicreview of technology-based approaches to diabeteseducation for young people (defined as children andyoung people up to the age of 21 yr) and to determineeffectiveness and gaps in current research.We report onthe search for relevant studies, the critical appraisalprocess resulting in the selection of five studies and theclinical and research recommendations arising from thenarrative synthesis of these studies.

Background

Four out of five young people with diabetes in the UKhave inadequate blood glucose control, and researchcontinues to describe poor long-term clinical andpsychological prognosis (1). To improve outcomes,

evidence points to the need for educational andpsychological support based on clearly identified needs(2). This is particularly relevant to young people whoshow a precipitous decline in treatment adherence asthey move through adolescence towards adulthood (3).However, significant gaps in educational provisionhave been found for this age group (4), and as a result,a number of educational models have been funded inthe UK for research. Alongside this, Information andCommunication Technology (ICT) has been identifiedas an area for further investigation (5, 6). The questionto be explored here is what role ICT can play in theeducation process, particularly for young people forwhom diabetes self-management evolves alongsideadaptation to developmental changes in associationwith individual contextual factors and disease course.

Pediatric Diabetes 2009: 10: 474–483doi: 10.1111/j.1399-5448.2009.00509.xAll rights reserved

Pediatric Diabetes 2009: 10: 474–483.

474

From this perspective, the educational process isdynamic. It runs along a timeline that has a history aswell as a current and a future perspective. In this light,education is a phenomenon characterized by changeand transformation (7).Various reviews have already looked at the use of

ICT in patient education. Some have focused onyoung people and all types of educational interven-tions with no subgroup analyses for ICT (8–12),others have included all ages with no subgroupanalyses for young people (13–15) and some havefocused on a single type/form of ICT intervention(16–18). The majority have reported positive effects inrelation to knowledge and social support withpossible improvements in behavioural and clinicaloutcomes, highlighting the potential of educationaltechnology to provide a link between education andtreatment concordance. Recommendations includethe need to look at effects for different groups ofpeople with chronic illness. In line with this, ourreview sought to synthesize the best available evidenceon ICT-based interventions for young people (up tothe age of 21 yr) living with diabetes. It aimed toreview effectiveness and to identify gaps in currentresearch. Its purpose was to inform a new researchstudy that is developing an Adolescent DiabetesNeeds Assessment Tool (ADNAT study).

The review

For this review, ICT interventions were defined asthose aiming to enable learning about diabetes self-management using technology-based environments,which allow for diversity of information and/or infor-mation flow and/or connectivity between differentinformation paths. Examples include social networkingtools, such as mobile phones and chat rooms, Internetsites and specialist CD-ROMs.The review also focused on learning about diabetes

self-management as an evolving process with learners’needs in a constant state of change and adaptation. Thisview recognizes education as a complex intervention thatmust account for the facts that knowledge is necessarybut not sufficient; that developmental factors, stress andcoping mechanisms play an important role and thatinteraction between medical, social and psychologicalfactors are key to self-care (19). From this perspective,the aim of any form of education is to develop not onlyself-care competence, that is, relevant knowledge, skillsand attitudes, but also coping skills to help young peopledealwithuncertainty andnewproblemsas theyarise andto be able to creatively adapt to change. This perspectivesees learning as an open system within a series of otherinterrelated systems (e.g., formal learning at school or inthe hospital, informal learning from significant others,e.g., parents and peers, and situational learning throughpersonal experience) that feed back on themselves with

individual learning needs assessment, an ongoing part ofthe process (20). From this perspective, the role ofeducators is to help young people make connectionsbetween all these different forms of learning. Suchlearning is therefore an emergent process, and ICT mayhave a role to play in supporting this process, given thehigh profile of technology in young people’s lives.

Aim

The aims of this study were to provide a systematicreview of the clinical effectiveness of ICT-basededucational interventions for young people living withdiabetes, to provide guidelines for practice and toidentify research gaps.

Design

The review followed the Centre for Reviews andDissemination (CRD) (March 2001) report number 4(21). Clinical effectiveness was based on those definedby the UK Health Technology Assessment (HTA)report (13).

Search methods

Electronic databases covering the medical and socialscience literatures were searched including: Medline,Scopus, Psycinfo, CINHAL, Web of science, BritishNursing Index, UK National Research Register,Conference Papers Index, Research Finding ElectronicRegister, Cochrane Library, CRD (covering DARE,HTA and NHS EED databases), FADE (the NorthWestGrey Literature Search) and theNational LibraryforHealth (full search strategy available from authors).The search strategy had high recall and low precisionbecause of the diversity of terms used to represent thetopic (14 447 titles inspected, including duplicates). Forpapers to be included, they therefore had to meetspecific criteria shown in Table 1.All potential titles and abstracts were provisionally

included for consideration on the basis of full textarticles (n ¼ 196). Any papers that fitted the inclusioncriteria were given a reference number and exportedinto bibliographic databases set-up in Endnote Refer-ence Manager (n ¼ 86). The reproducibility of thisprocess was tested in the early stages of the review andfound to be good. Final inclusion/exclusion decisionswere made by consensus of two researchers aftersubjecting the papers to detailed analysis usinga screening tool adapted from the HTA report (13).Reference lists were searched for additional papers, andcontact made with authors/institutions where furtherinformation was required. Where decisions wereunclear, papers were reviewed by a third independentresearcher for discussion.

Systematic review of educational technology for young people with diabetes

Pediatric Diabetes 2009: 10: 474–483 475

Quality appraisal

All quantitative studies were systematically evaluatedby two researchers using quality checklists in accor-dance with criteria recommended by the CRD (21). Forqualitative studies, the checklist developed by Attreeand Milton (22) was used. Main reasons for exclusionsincluded age of participants (for mixed age groups,paper excluded if no subgroup analysis for youngpeople), health professional education, description ofintervention only, initial feasibility/pilot studies with nofollow-up, biotechnology or telemedicine, diabetes notthe main focus and non-English language texts. Forthose that remained, many focused primarily ontechnological development with little if any informa-tion on outcome effects, while others reported limitedevaluations.While these studies were excluded [(18, 23–37), papers that met the inclusion criteria but failed thequality assessment process], some provided usefuldetailed information on intervention developmentand implementation. Good examples include interac-tive educational games (24–26), a personal interactivetool kit (23), an instructional problem solving and goalsetting system (31) and computer simulations (32, 33,35). Following systematic evaluation, five researchstudies were selected, of which two had been describedin more than one article. Thus, the five studies arerepresented by a total of 11 papers (38–48). The dearth

of available studies for inclusion and the pilot andfeasibility nature of many of the published investiga-tions illustrate the fact that the use of educationaltechnology to enhance diabetes education for this agegroup is very early in its evolution.

Data extraction and synthesis of theevidence

Data were extracted and synthesized onto computer-based forms developed for the review. Meta-analysiswas not undertaken because of heterogeneity of thestudies: mixed methods were used in two of the studies;two used quantitative and one qualitative methodsonly. They varied in relation to numbers of partici-pants, reporting of participant characteristics, durationand type of interventions, length of follow-up, theoret-ical foundations, and settings (only one was UK basedand remaining four USA based). Table 2 providesa detailed summary of each of the studies.

Description of the interventions

ICT interventions included ‘self-instructional’ (n ¼ 2),‘information feedback’, ‘online forums’ and an ‘inter-active game’. Those with linked papers [Franklin et al.(38–42) and Charron-Prochownik et al. (43–45)] paidparticular attention to reporting the process ofintervention (technology) development, including theinvolvement of users. In the case of Franklin et al.,a participatory design methodology was reporteddemonstrating how practitioners, software developersand users worked together. In the case of Charron-Prochownik et al., six phases of CD-ROM programmedevelopment are described, including user involve-ment, pilot testing and evaluation. Three of the studiesmentioned training: Franklin et al. – members of thediabetes team received training in goal setting; Kumaret al. (48) – participants and their families receivedintervention training and Charron-Prochownik et al. –intervention groups received one training session pre-trial. Duration of follow-up was primarily short term(1–3 months) with only one study (Franklin et al.)reporting outcomes at 12 months. Numbers of partic-ipants varied from 7 to 92, and ages of participantsranged from 8 to 21 yr.Oneof the studies (Charron-Prochowniketal.) focused

specifically onone topic (preconceptual counselling). Theremaining four focused on multiple components (andtherefore outcomes) despite the fact that this raisedconfounding issues that had to be taken into account inthe interpretation of the results. Those studies that usedmixed methods [Franklin et al. and Ravert et al. (47)]allowed different dimensions to be captured, expandingtheir scope through triangulation. This, however, de-mands strong theoretical underpinnings to allow sense tobe made of the combined data, particularly where

Table 1. Inclusion criteria

Participants Up to 21 yr of age with any formof diabetes

Intervention Information and CommunicationTechnology-based educationalinterventions

Setting Primary (general practice),secondary (hospital based)and community

Outcomes (14)Clinical end-points Glycated haemoglobinQuality of life Psychosocial effectsCognitive changes Knowledge and specific skill

development, for example,blood glucose monitoring skills

Diabetes-relatedcomplications

Hypoglycaemia andhyperglycaemia (acute)

Follow-up Immediate, intermediate (up to6 months.) and long term(.6 months)

Study design Randomised controlled trialCohort or case–controlled studiesQualitative studiesExisting systematic reviewsExclude:Pre/post studiesPosttest studies onlyDescriptive studies

Reporting Must report sufficient detail ofintervention being tested

Dates 1990–2007Language English

Cooper et al.

476 Pediatric Diabetes 2009: 10: 474–483

Table

2.Desc

riptio

nofstudiesincluded

Study,

year,se

tting

Rese

archdesign,QA,FU

Sample

populatio

nInterventio

n/theory

Resu

lts

Franklin

etal.(38–4

2),

2003–2

007,UK

Mixedmethods(RCT1

interviews).Threegroups:

1.CIT

only

(controls,n¼

28)

2.CIT

1Interventio

n(I)(n

¼33)

3.IIT1

I(n

¼31)

QA:Adequate

inallareas

FU:12months

n¼

92

Meanage:13.1

yrRange:8–1

8yr

M:F–53:47%

Disease

duratio

n:1.7–8

.6yr

Socio-economic:carstairs

depriva

tionsc

ore:23.73

to0.73

Ethnicity:3non-w

hite

Self-instructio

nal:SweetTa

lkGoalse

ttingin

clinic

and

scheduledpatie

nt-sp

ecific

text

mess

ages

Website:biofeedbackof

BG

resu

ltsandgraphs

Questionsandansw

ers

usingtext

mess

ages

Text

‘newsletter’

Stafftraining:motivatio

nal

goalse

tting

Theory:STA

R,Health

BeliefModel

ghb:IITonly

(p,

0.001)

Groups2and1:

Self-efficacy:

p¼

0.003

Adherencesc

ale

(self-report):p¼

0.042

Perceptio

nsofqualityand

frequencyofsu

pportfor:

BG

testing:,0.001

Health

yeatin

g:,0.001

Exe

rcise:,0.001

Groups3and2:

Perceptio

nsofqualityand

frequencyofsu

pportfor:

Health

yeatin

g:0.02

Secondary

outcomemeasu

res:

No.ofclinic

visits:p¼

0.016

Emergencyhotlinecontacts:

p¼

0.011

82%

feltinterventio

nhad

improve

dse

lf-management

Liked:mess

agesrelatin

gto

diabetes;

sharedexp

eriences;

practic

alasp

ects

Most

annoying:receiving

repeats

ofsa

memess

age

Charron-Prochownik

(43–4

5),1998–2

006,USA

Randomisedcontrolled

repeatedmeasu

resstudy.

Threegroups:

1.SC

(controls,n¼

20)

2.SC

1CD-ROM

(n¼

17)

3.SC

1Book(n

¼16)

QA:Adequate:1fla

w–

treatm

entallocatio

nconcealm

entnotreported

FU:im

mediate

and3months

n¼

53

Meanage:17.4

yrRange:16–1

9.9

yrAllfemales

Meandisease

duratio

n:9.9

yrSocio-economic:64%

.middle

income

Ethnicity:4.4%

Afro-American

Self-instructio

nal:CD-ROM

–preconceptualcounse

lling

Theory:STA

R,Exp

anded

Health

BeliefModel

Training:interventio

ngroups–1comprehensive

sess

ionofprogramme

BookandCD:

Ratedashelpfulandeasy

tounderstand

Significantincrease

sin

knowledge,su

stainedat3months

Significantgroup-by-tim

eeffects

forbeliefs

(benefits

andbarriers)

Perceptio

nsofbenefits

improve

d,su

stainedat3months

Perceptio

nsofbarriers:CD

significantdecrease

,book

significantincrease

Nosignificantgroup-by-tim

eorgroupeffects

for

susc

eptib

ility/seve

rity/self-efficacy

Socialsu

pportsignificantincrease

,su

stainedat3months

Intentio

nto

seekPC/family

planning:

significanttim

eeffect,butbook

showedsignificantdecrease

at

3months,

CD

sustainedincrease

Actualbehaviours:nosignificant

group-by-tim

eeffect



Table

2.Contin

ued

Study,

year,se

tting

Rese

archdesign,QA,FU

Sample

populatio

nInterventio

n/theory

Resu

lts

Smith

etal.(46),

2006,USA

Qualitativeethnographic

study

QA:Ove

ralladequate;1

flaw

–sa

mplingstrategy

notreported

FU:4weeks

n¼

7Meanage:notreported

Range:19–2

1yr

M:F–57:43%

Meandisease

duratio

n:.1yr

Socio

economic:all

university

students

Ethnicity:allCaucasian

Inform

atio

nfeedback:

BG

monito

rsanddigita

lcamerasto

collectBG

resu

ltsandphotosof

routin

esparticipants

believe

dhadim

pacton

theirhealth

Data

transferredto

visu

alizatio

nso

ftware

that

hyp

erlinke

ddata

Reviewedwith

staffusing

guidedquestions

Theories:

Predictivetheoriesof

learning

Those

with

problemstookmore

pictures(cognitive

changes)

Emphasize

dpsy

choso

cialconcerns

impactin

gupondiabetesincluding

harm

fulbehaviours

(qualityoflife)

Exp

lainedBG

leve

lsin

term

sofphotos,

use

fulto

understandrelatio

nsh

ipbetweendietandBG

leve

ls(cognitive

changes)

Photosuse

dasmemory

aid

toreconstruct

eve

nts

thatledto

aparticularBG

profile

(cognitive

changes)

Data

showeddesire

topursueunique

identitymore

importantthanpotentia

lhealth

risk

s(qualityoflife)

Photosoffoodsymbolisedannoya

nce

with

restrictio

ns(qualityoflife)

Photosemphasise

dtheneedfor

educatio

nofpeers

(qualityoflife)

Those

alre

adyconsciousoftheirhealth

behaviours

gainedlittle

(cognitive

changes)

Rave

rtetal.(47),

2004,USA

Mixedmethods

QA:Ove

ralladequate;

1fla

w–ethicalissu

es

notreported

FU:Notapplicable

Websites(n

¼8)

Agerange:11–1

9yr

Genderfor48.5%

of

mess

ages:

M:

F–21:79%

Disease

duratio

nfor63%

ofmess

ages:

,1yr,

14%;1–5

yr,24%

Socio-economic:unkn

own

Ethnicity:unkn

own

Onlineforum:

Question/answ

erforums

(Q/A,n¼

155,46%)–

mess

agespostedand

publicly

answ

eredby

profess

ionals

Discuss

ionforums

(D/F,n¼

185,55%)–

themecentredInternet

supportgroupsand

mess

ageboardsin

whichpeers

query

andreply

tooneanother’s

mess

ages

Notheory

reported

Totaln

o.ofmess

ages¼

340;ofthese

:74%

requestsforinform

atio

nwith

majority

(100%)to

Q/A

forum;43%

topeerD/F

TopicsD/F

:Q/A

(%):

Life

tasksrelatingto

adolesc

ence¼

21:14

Socialsu

pport¼

50:1

Medical/health

care

¼1:7

Factualinform

ationondiabetes¼

45:11

Problemsin

self-managing

diabetes¼

28:9

Intrapsychic

concerns,

forexa

mple,eating

disorders

¼8:6

Statisticalanalysis(chi-sq

uared):

Socialsu

pportandlifetasks

more

commonin

D/F

(p,

0.001)

Femalespostedmore

messages

atD/Fsandmalesmore

on

Q/A

forums(p

¼0.041)

Nosignificantgenderdifferences

forrequests/replies/topics

14–1

6yr,postedmost

messages,

then

17–1

9,then11–1

3.Nosignificant

differencesbetweenage/fo

rum

type/topics

Ageatdiagnosis:

10yr1

postedmost

messages,

followedby6–10yr,then,5yr

Nosignificantdifferencesbetweenduration

ofillness

andtypeofforum

Cooper et al.


inconsistencies exist (49, 50).Threeof the studies reportedusing theory: Franklin et al. and Charron-Prochowniket al. used the STAR (Stop-Think-Act-Reflect) decision-making theoretical framework and the Health BeliefModel. Smith et al. (46) used a pedagogical approachbased on the emergence of interventions driven by theways in which users interact with them, rather thanfocusing strictly on a set of learning outcomes as an end-point for evaluation. This approach appreciated educa-tion as an interrelated open system, as discussed in theIntroduction. The remaining two failed to mentiontheory.

Results

Glycaemic control

The two studies reporting ghb data (glycated hemo-globin) (Franklin et al. and Kumar et al.) found noproven significant differences between intervention andcontrol groups in the short term (3.5–5 months) orlonger term (12 months). However, Kumar et al.(n ¼ 40 participants) found that the intervention groupwas3.4 timesmore likely to achieveormaintain ghb levelsof,8% (p ¼ 0.06) with the frequency of hyperglycaemiasignificantly less in the game group (p , 0.001). Franklinet al.’s study (n ¼ 92 participants) had three arms:conventional insulin therapy (CIT) only (control group),CIT1 intervention and intensive insulin therapy (IIT)1intervention. They reported no significant differencesbetween the CIT group with and without ‘Sweet Talk’intervention, and while the IIT group showed significantdifferences (p , 0.001) in ghb, they also found significantdifferences in the number of clinic visits (p ¼ 0.016) andemergency hotline contacts (p ¼ 0.011). They concludedthat differences in glycaemic control may be because ofincreased contact with the diabetes team. This findingrecognizes the complex interplay of factors that influenceclinical outcomes. Of particular note here is that no studyreported outcome data on changes in insulin treatment.

Knowledge

Not all studies reported knowledge outcomes. This mayreflect research that has shown knowledge to be onlyweakly associated with other outcomes (51, 52), giventhat there is a threshold of knowledge beyond whichother factors (e.g., socio-economic status and levels ofsocial support) are more important to achieve diabetes-related treatment goals. For those that did reportknowledge outcomes – Charron-Prochownik et al.(n ¼ 53 participants) and Kumar et al. (n ¼ 40 partici-pants) – significant changes were noted. Ravert et al.(n ¼ 340messages on eight websites) also found that themajority of requests (74%) in discussion and questionand answer forums were for information. For youngpeople, knowledge increments are an essential cognitiveTa

ble

2.Contin

ued

Study,

year,se

tting

Rese

archdesign,QA,FU

Sample

populatio

nInterventio

n/theory

Resu

lts

Kumaretal.

(48),2004

Prosp

ectiveRCT.

Ass

ignedto

PDAsusingagestrata:

8–1

2and13–1

8yr:

With

Game(n

¼19)

With

outgame

(controls,n¼

21)

QA:Ove

ralladequate

but

treatm

entallocatio

nconcealm

ent&intentio

nto

treatanalysis

notreported

FU:4weeks

and3months

N¼

40

Meanage:13.6

yrRange:8–1

8yr

M:F–50:50%

Disease

duratio

n:6.4

yrT1D,n¼

39/T2,n¼

1Socio-economic

factors/ethnicity

notreported

Interactivegame:DiabetNet

software

PDAs/wireless

enabled

diabetesdata

management

software

1BG

monito

r1

motivatio

nalgame

IntegratesBG

leve

ls1

insu

lindose

s1

CHOseaten

Aim

:to

predictBG

leve

lsbase

dongraphicaldisplay

ofpersonaldata

Points

givenforplaying

gameandaccuracyof

predictio

ns

Training:parents

and

adolesc

ents

–use

of

interventio

nNotheory

reported

Ove

rallparticipatio

n:nosignificant

differences.

At3.5–4

months:

ghb:

NosignificantdifferencesGame

group3.4

timesmore

likely

toachieve

/maintain

ghbleve

lsof,8%

(p¼

0.06)

At4weeks

:BGM/No.transm

itted:Gamegroup

p,

0.001(significantly

more)

Meandaily

CHO

intake

:nodifferences

butthose

checkingBG

leve

ls41

times/day:

p,

0.05

Frequencyofhyp

erglycaemia:game

groupp,

0.001(significantly

less

)Diabeteskn

owledge:gamegroup

p,

0.005(significantly

increase

)Satisfactio

n:neith

eragenorgender

predictedsu

ccess

CIT,conve

ntio

nalinsu

lintherapy;

FU,follow-up;IIT,

intensive

insu

lintherapy;

QA,qualityass

ess

;SC,standard

care;STA

R,stop-think-act-refle

ct.

BG,bloodglucose

;RCT,

randomisedcontrolledtrial;PC,pre-conceptualcounse

lling;D/F,discuss

ionforums;

PDA,personaldigita

lass

istant;CHO,corbohyd

rate



component for developing diabetes self-care. However,it is the concept of meaningful learning/engagement thatis important here. The aim should be to move learnersfrom an understanding of general concepts to anunderstanding of specifics that have individual rele-vance. Franklin et al. (n ¼ 92), for example, found thatmessages containing personal information relating totheir diabetes and shared experiences of living withdiabetes, alongside practical aspects such as clinicreminders were particularly valued. Smith et al. foundthat personal visualizations helped young people makeconnections between their blood glucose measures andtheir behavioural routines. Such approaches, however,demand that participants are able to manipulate ideas,highlighting the need for interventions to be develop-mentally appropriate (in this study, participants were19–21 yr old). This is particularly important given theneed to interact with young people when they are readyto take over some of their self-care behaviours. For this,they must have developed reasoning powers, be able tosee the relationships that link things together and beaware of what active measures are needed to controldiabetes (53). While specific length of time sincediagnosis was reported in four of the studies, nonereported developmental stages of participants in relationto reasoning abilities and cognition.

Diabetes self-management

In relation to translation of what participants hadlearnt into self-care behaviours, Franklin et al. (n ¼ 92)reported significant (positive) differences in self-efficacy, adherence and perceptions of quality andfrequency of self-care support at 12 months. Kumar etal. (n ¼ 40) found significant short-term differences inthe numbers of transmitted blood glucose tests[alongside frequency of hyperglycaemia (significantlyless) and a positive trend towards achievement/main-tenance of ghb levels of,8% (p ¼ 0.06)]. Franklin et al.reported that 82% of participants felt that theintervention had improved their self-management,correlating with a significant change in self-reportedadherence.However,Charron-Prochownik et al. (n ¼ 53)found that while intentions to use preconceptual counsel-ling/family planning increased in all groups, there was nosignificant group-by-time effect on actual behaviours at3 months.However, short-term follow-up for twoof thesestudies limits the significance of these findings, givenrecommendations for longitudinal measures of behaviourchange (54).

Psychosocial effects

Akey issue with participants is facilitating discussion ina way that enables them to talk about personal andoften sensitive information. Findings from three of thestudies provide insights into how ITC could support

this process. Ravert et al. (n ¼ 340 messages) foundthat social support was the most common form ofcommunication in online discussions. Franklin et al.reported that their intervention provided a forum fordisclosure of personal or embarrassing questions thatthe young people may have felt unable to ask in clinic.Smith et al. (n ¼ 7) reported that their interventionenabled discussion of psychosocial concerns andpersonal issues, including harmful behaviours. Theyfound that a desire to pursue a unique identitywasmoreimportant than the potential health risks associatedwith certain behaviours. This is not new information. Itis, however, central to our understanding of the need tomeet patients on their own terms and to place themwithin their everyday social context emphasizingconnectedness, relationships and modes of belonging(23). ICT, in this case in the form of an informationfeedback system, appeared to provide a tool forallowing this to happenbut only for those not consciousof their health behaviours. This reinforces the need forsuch tools to be appropriately targeted, as highlightedby Ravert et al. They found that 14- to 16-yr-oldpatients and those diagnosed longer posted the highestnumber of messages on interactive forums, that therewere no significant gender differences for requests/replies/topics, but females posted significantly moremessages at discussion forums and males more on thequestion and answer forums. Franklin found thatfemales sent significantly more discussion-based mes-sages unrelated to diabetes than did boys, and Kumaret al. found that gender differences were not a predictorof success in their intervention. Information on othercharacteristics, in particular ethnicity and socio-economic status, was limited, and no correlations werereported. Franklin, for example, found no correlationbetween total messaging frequency and clinical andsociodemographic characteristics.What was reported inall the studies, however, related primarily to Caucasianpopulations creating a limitation to transferring theresults of this review and highlighting the need for moretargeted research.

Discussion

This paper has systematically reviewed five quality-assessed studies of ICT interventions for young people(ages 8–21 yr) living with diabetes. Findings suggestthat ICT has beneficial effects on knowledge andpsychosocial well-being, with probable improvementsin self-care behaviours. Confounding variables (e.g.,changes in treatment, significant increases in healthcare professional contact and the absence in Franklinet al.’s study of an ITT arm only) make it impossible toprove ghb benefits, although positive trends werereported. These findings are limited, however, bya number of factors, including the small number ofviable studies, the heterogeneity of interventions,

Cooper et al.


short-term follow-up and diverse focal points (vs.interventions focused solely on a single outcome).What is important though is that these findingscorrespond with those from other less targetedreviews of ICT-based patient education reinforcingthe potential of ICT to provide an impact on anda link between education and treatment concordancein the paediatric and young adult populations.Noteworthy and different was that ICT made avail-able peer-based psychological support applicable toboth genders. This is an important area to emerge,given the need for young people to define self whileconforming to a peer group within a different(diabetes) experience and demands further research.Also apparent is the need for more rigorous evidenceand in line with this, the following research gaps havebeen identified:

(i) To date, there is a lack of rigorous ICT diabetesresearch in the developing nations, highlightingthe fact that the use of technology to enhancediabetes education is very early in its evolution.Four of five of the included studies had beenconducted in the USA; Japan and Sweden werealso prominent in the excluded studies, perhapsreflecting nations where ICT plays a bigger partin their health care systems.

(ii) The review has highlighted the need to addressthe complexities of this type of research usinga phased approach to link intervention develop-ment, training and implementation with researchdesign. In line with this, our review has reinforcedthe importance of theory for discerning mecha-nisms of action so that data can be properlyutilized for better clinical outcomes. These con-clusions reinforce those reported in other diabeteseducational reviews (13). Smith et al.’s studyprovides an example of how this can work. Theirstudy appreciated education as an interrelatedopen system characterized by emergence ofpersonal learning outcomes/needs. Here, theintervention enabled participants to make mean-ingful connections between their feelings (psy-chosocial concerns) and their treatment regimenas well as providing a channel for the flow ofpersonal information (memory aid). While find-ings are limited by short follow-up and thenumber and range of participants, it does providean example of a creative intervention that couldbe tested further using a well-designed quantita-tive trial.

(iii) The review found a lack of long-term outcomes,and there was no cost-effectiveness data reported.Without this, it is unlikely that educational tech-nology will be implemented into clinical practicebecause questions about how long effects can bemaintained have not yet been answered.

(iv) To address the uniqueness of each young person,research is needed to develop learning needsassessment tools in alignment with their develop-mental stages, i.e., age-related reasoning andcognitive abilities, alongside age of and timesince diagnosis.

(v) Research needs to be targeted to look at differentethnic and socio-economic communities to answerquestions regarding cultural disparities and healthinequalities.

(vi) There is evidence to suggest that ICT has thepotential to act as a social networking vehicleoffering psychosocial support. The latter is animportant area for further investigation given theimportance of socializing (conversations) to thisage group and to education as a whole.

Conclusions

This review has explored the effectiveness of ICTinterventions for young people living with diabetes.While large numbers of studies were located, the vastmajority were limited by their primary focus on designand implementation without rigorous testing. For thefive studies included, benefit was found in relation toknowledge and psychosocial well being with probableimprovements in self-care behaviours. While positivetrends were reported for glycaemic control, there wereno proven effects. The review has therefore supportedfindings from other less targeted reviews and hashighlighted the need to improve the quantity andquality of ICT research in line with evaluating othercomplex interventions. In addition, the fact that youngpeople’s learning is an emergent process means thatlongitudinal studies are required to explore impact overtime in alignment with the developmental stages ofparticipants. Such research is urgently needed if we areto realize the full potential of technology for a diseasethat has rising prevalence and increasing educationalneed, which is currently not being met effectively.

Acknowledgement

Liverpool University’s Research Development Fund which hassupported the literature search for the Review, and Diabetes UKwho are funding the ADNAT study.

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