Self-management interventions for people with intellectual disabillities: a systematic review

(1)

Self-management

interventions

for

people

with

intellectual

disabilities:

A

systematic

review

Janice

Sandjojo

a,b,c,

*

,

Emma

G. Eltringham

a

,

Winifred

A. Gebhardt

a,b

,

Aglaia

M.E.E.

Zedlitz

a,b

,

Petri

J.C.M.

Embregts

d

,

Andrea

W.M.

Evers

a,b,e a_Leiden_University,_Institute_of_Psychology,_Health,_Medical_and_{Neuropsychology}_Unit,_Leiden,_the_Netherlands

b

LeidenUniversity,LeidenInstituteforBrainandCognition(LIBC),Leiden,theNetherlands

c

Raamwerk,Noordwijkerhout,theNetherlands

d

Tranzo,TilburgSchoolofSocialandBehaviouralSciences,TilburgUniversity,Tilburg,theNetherlands

e

LeidenUniversityMedicalCenter,DepartmentofPsychiatry,Leiden,theNetherlands

ARTICLE INFO Articlehistory:

Received11December2018 Receivedinrevisedform4May2020 Accepted6June2020

Keywords:

Behaviouralchangetechnique Intellectualdisabilities Intervention Review Self-Management

ABSTRACT

Objective:Peoplewithintellectualdisabilities(ID)oftenexperiencedifﬁcultiesmanagingtheiraffairs. This studyreviewedself-managementinterventionsforpeoplewithmildtomoderateID,studying interventions’effectivenessandappliedbehaviouralchangetechniques(BCTs).

Methods:AsystematicliteraturesearchwasconductedinPubMed,PsychINFO,WebofScience,Embase, Emcare, Cochrane, and ProQuest. Data were extracted on study, intervention, and participant characteristics,andresults.

Results:Ofthe681studiesretrieved,36mettheinclusioncriteria.Moststudiesusedcasestudydesigns and smallsamples.Therewereeight randomised controlledtrialsand onenon-randomisedstudy. Studiesweremostlyofmoderatequality(MixedMethodsAppraisalTool).Twenty-twointerventions targetedasingularpracticalskillforaspeciﬁccontext.Inallinterventions,theproviderappliedseveral BCTs;in13studiesparticipantswerealsotrainedtoapplyBCTsthemselves.Inallstudies,improvements in self-management were reported, which mostly maintained over time (n = 20). If measured, generalisationtoothersettingswasalsofound.

Conclusions:Futurestudiesshouldaimforahighermethodologicalqualityandcouldconsidertargeting moregenericself-managementandawiderapplicationofBCTsbypeoplewithIDthemselves. Practiceimplications:Theﬁndingssuggestthattrainingcanpromoteself-managementinpeoplewithID.

Contents

1. Introduction ... 1984

2. Methods ... 1984

2.1. ThissystematicreviewwasperformedinaccordancewiththePRISMAguidelines[28] ... 1984

2.1.1. Searchstrategyandinclusioncriteria ... 1984

2.2. Studyselection ... 1985

2.3. Dataextractionandanalysis ... 1985

3. Results ... 1986 3.1. Searchresults ... 1986 3.2. Studycharacteristics ... 1986 3.3. Studyquality ... 1986 3.4. Participantcharacteristics ... 1986 3.5. Outcomemeasures ... 1986

* Correspondingauthorat:JaniceSandjojo,LeidenUniversity,FacultyofSocialandBehaviouralSciences,InstituteofPsychology,Health,MedicalandNeuropsychology Unit,POBox9555,2300RB,Leiden,theNetherlands.

E-mailaddress:j.sandjojo@fsw.leidenuniv.nl(J.Sandjojo).

https://doi.org/10.1016/j.pec.2020.06.009

ContentslistsavailableatScienceDirect

Patient

Education

and

Counseling

(2)

3.6. Interventioncharacteristics ... 1986

3.7. Settingandprovider ... 1989

3.8. Lengthandintensity ... 1989

3.9. Behaviouralchangetechniques ... 1989

3.10. Interventioneffectiveness ... 1989

4. Discussionandconclusion ... 1993

4.1. Discussion ... 1993 4.2. Limitations ... 1994 4.3. Conclusion ... 1994 Sourceoffunding ... 1994 Acknowledgements ... 1995 References ... 1995 1.Introduction

Awareness isincreasingthatpeoplewithintellectual disabil-ities(ID)shouldhaveequalrightsand beincludedasequal co-citizensinsociety.Thisissupported bytheUnitedNations[1], whichfurtherdeclarethatpeoplewithIDshouldbeenabledtolive asindependentlyaspossibleandtobeautonomouswithrespectto makingtheirown decisions.In theNetherlands,thisincreasing awareness coincides with the emergence of a ‘participation society’,where citizens, includingpeople withID,first have to try to arrange their affairs themselves, before they can turn towardsthegovernment.However,peoplewithIDcommonlyhave difficultieswithself-managingtheiraffairs[2–4],whichcanvary fromdif_ficultieswithpersonalcareand householdactivities,to troublewithrecreationalactivities,communityparticipation,and employment[5–8].Variousstudieshaveshownnonethelessthat mostpeoplewithIDhaveadesiretomanagetheiractivitiesmore independently[2,9–11].IncreasingtheabilitiesofpeoplewithID tohandletheiraffairsthemselvescouldenhancetheirqualityof life and community participation [3,12] and could reduce behavioural problems [13]. Interventions that promote self-managementofpeoplewithIDarethereforeofimportance.

Self-managementisabroadtermthatreferstoprocessesand activities that are related to deliberately influencing one’s behaviourin order to reach personally desired outcomes [14]. Thisumbrellatermincludesbeingindependentinhandlingone’s affairsandintakingcareofoneself,therebysolelyrelyingonone’s own abilities, efforts, resources, and judgement [15]. Self-managementisalsostronglyrelatedtoself-determination,which involves having personal control over making choices and decisionstolead one’slife accordingtoone’s own preferences, withoutbeingcompletelysubjectedtoexternalinfluences[16,17]. Variousstudiesonself-managementinterventionsforpeople withIDhavebeenconductedandseveralliteraturereviewshave already collectively analysed some of these previous studies. However,like the individual studiesthemselves, these reviews onlyfocusedonaspecificself-managementdomainsuchas self-managementatwork[18–21],self-managementofchronicdisease [22,23],ortheuseofactivityschedules[24]andself-instructions [8]. Althoughit was generallyfound thatthe self-management interventionsreviewedwereeffective,itisdifficulttodetermine whichfactorsplayakeyrolein theinterventions’effectiveness. Thisis largely due tostudies_’ widelyvarying self-management goals,outcomemeasures,andresearchmethods,which hamper thoroughcomparison.Agreaterunderstandingofthekeyelements of effective self-management interventions could benefit the furtherdevelopmentofsuchinterventionsandconsequentlythe qualityoflifeofpeoplewithID.Inthisregard,furtheridentification of the behaviouralchange techniques (BCTs) applied and their respectiveeffectivenesscouldcontributetoourunderstandingof howself-managementinterventionsworkandhowtheireffects can be optimised [25]. BCTs are active components of an

interventionthataredesignedtoalterorredirectcausalprocesses that regulate behaviour [26], such as self-instructions and reinforcements.PeoplewithIDcanlearntoapplyBCTsthemselves toattainagreaterself-management,buttheycanalsobeapplied byaninterventionprovider.Recently,Willems,Hilgenkamp,Havik, WaningeandMelville[27]examined howBCTswereappliedin interventionsforpeoplewithIDthattargetedphysicalactivityand nutrition.Theyfoundthatinmostcases,severalBCTswereapplied intheinterventionsreviewed,suchas‘providinginformationon consequences of behaviour in general’ and ‘planning social support/social change’.The applicationof BCTs in self-manage-mentinterventionsforpeoplewithIDhasnotyetbeenstudied.

The aim of the current systematic literature review is to summarisestudiesthathaveevaluatedtheeffectivenessof self-managementinterventionsforpeoplewithmildtomoderateID.In contrasttotheabovementionedreviewsthatonlyfocused ona certain type of self-management interventions, this review analyses a broad range of interventions that aim to promote self-managementindailylife.WeaimtoexaminetheBCTsthat wereusedtopromotethetargetedself-managementbehaviour,as wellastheeffectivenessoftheinterventions.Inthisway,weaimto createabroaderinsightintotheeffectsofsuchself-management interventionsforthispopulation.

2.Methods

2.1.Thissystematicreviewwasperformedinaccordancewiththe PRISMAguidelines[28]

2.1.1.Searchstrategyandinclusioncriteria

Inordertoidentifyrelevantstudiesforourreview,PubMed( incl. MEDLINE), PsychINFO, Web of Science, Embase, Emcare, COCHRANELibrary(incl.CENTRAL),andProQuest(SocialServices AbstractsandSociologicalAbstracts)weresystematicallysearched from inceptionto 18 September 2017. Thesearch strategy was basedonthePopulation,Intervention,Comparison,andOutcome (PICO)approach.Searchterms(includingmajorheadings,Medical SubjectHeadingterms,titlewords,andtextwords)wereusedthat are indicative of intervention studies (Intervention) aimed at promoting self-management (Outcome) for adults with ID (Population), excluding studies that solely includedchildren or adolescents(seeAppendixA).

(3)

effects of theintervention onadults withmild tomoderate ID couldbedistinguishedfromthepeopleintheothergroups.Studies were excluded if the interventions were aimed at managing challenging behaviour or emotions, or if outcome measures focused on physical outcomes (e.g., body weight, oral health status).Theselatterstudieswereexcludedbecauseimprovements inphysicalfunctioningwouldnotdirectlyindicateimproved self-managementskills.

2.2.Studyselection

Afterexcludingallduplicates,retrievedreferenceswereloaded intoEndnote.Titlesandabstractswereindependentlyscreenedby two reviewers (JS and EE) without blinding to authorship or journal(seeFig.1).An83.2%agreementwasachieved.Thefull textsofthearticlesthatpotentiallymetthecriteriawereretrieved and examined, including the articles for which there was disagreement. After screening the full texts, reviewers agreed for95.9%ofthearticlesthattheyshouldbeincludedorexcluded. Disagreementsbetweenreviewerswerediscusseduntilconsensus wasreached.For threecasesforwhich disagreementremained, twootherauthors(AZandWG)wereincludedinthediscussion.

Thequalityof theremainingstudieswas assessedusingthe MixedMethodsAppraisalTool[MMAT;29].Thiswasconducted independentlybytworeviewers(JSandEE),whodiscussedtheir judgements afterwards until consensus was reached. Quality criteriacouldberatedas‘yes’(1point),‘no’(0points),or‘can’ttell’ (0points).

2.3.Dataextractionandanalysis

From the studies included, two reviewers (JS and EE) independentlyextractedinformation aboutthestudy character-istics,participantcharacteristics,outcomemeasures,intervention characteristics,BCTs,andmainresults(bothdirectandat follow-up).Ifinformationwasmissing,wetriedtoretrievethemissing data fromtheauthors.Wewereable tocontacttheauthors of thirteen articles. One of them replied and provided us with additional information. Regardingthe BCTs,for each article we analysed which BCTswereused totargettheself-management behaviourandwhethertheseﬁtthetaxonomyofBCTsasdescribed by Michie, Ashford,Sniehotta, Dombrowski, Bishop and French [25].For12articles(33%),thiswasdonebytworeviewers(JSand EE)whoinitiallyagreedfor92.1%oftheBCTsandwhoagreedfor

(4)

100 % afterdiscussing the disagreements.Because of the high agreementrate,theotherarticleswereonlyanalysedbyoneofthe tworeviewers.AppliedBCTsthatwecameacrossthatwerenot describedintaxonomyofMichie,Ashford,Sniehotta,Dombrowski, Bishop and French [25] were deﬁned separately based onthe descriptions in the articles that we reviewed (Appendix B). A distinction was made whether BCTs were applied by the participant(e.g.,participantsuseself-instructionswhile perform-ingatask)orbytheprovideroftheintervention(e.g.,theprovider givesverbalinstructionsonhowtoperformatask).Thisallowedus toexaminetowhatextentparticipantsweretrainedtoexecutethe targetedself-managementbehaviourcompletelybythemselvesor whethertheywere still dependenton theprovider duringthe intervention.

3.Results

Afterdescribingtheresultsfromourliteraturesearch,ﬁndings arepresentedonthestudycharacteristicsandthestudyquality. Next,participantcharacteristics,outcomemeasures,intervention characteristics,andﬁndingsoneffectivenessaredescribed.Inspite ofourattemptstorequestmissinginformationfromtheauthorsof thestudiesincluded,muchofthesedataremainedmissing. 3.1.Searchresults

The literature search yielded 681 potential publications, of which483wereuniquearticles.Ofthe121fulltextsthat were retrievedafter screening of thetitle and abstracts, 36 met our inclusioncriteria.Articleswereexcludedbasedonahierarchical approach;ifanarticlewasalreadyexcludedbasedonaprevious reason, it was not further assessed whether it would also be excludedbasedonotherreasons.Detailedinformationaboutthe selectionprocessispresentedinFig.1.AppendixCprovidesalistof studiesthatwereexcludedintheﬁnalstage.

3.2.Studycharacteristics

Table1presentsthecharacteristicsofthe36articlesincluded. Exceptforthreestudies,allwereconductedinEnglishspeaking countries,ofwhichtheUnitedStateswasthemostcommon(n= 26).OthercountriesoforiginwereIreland(n=3),Canada(n=2), Sweden(n=2),GreatBritain(n=1),HongKong(n=1),andNew Zealand(n=1).Themajorityofarticleswerepublishedbetween 1979and1999(n=20),afewwerepublishedinorafter2010(n= 5).The total number ofparticipants in all36 studieswas 370. Samplesizesgreatlydifferedbetweenstudies,rangingfrom1to57. Nineteenstudies(52.8 %)had less thanﬁve participants.There werenodropoutsduringtheperiodinwhichinterventionswere provided, but ﬁve studies (article #4, 8, 11, 14, 30) reported dropoutsatfollow-upmeasurements,rangingfrom16.6%_–50%of theinitialsamplesize.Themajorityofstudieshada(multiple)case studydesign(n=24).Fewstudiesusedarandomisedcontrolled trial(n=8),hadano-treatmentcontrolgroup(n=5),orcontained morethanonetrainingcondition(n=7).Incaseofthelatter,the differencebetween the conditions concerned for example that moreBCTswereapplied inone group(e.g.,in additionto self-instruction,alsoself-evaluationand self-reinforcement),or that one group received in vivo training (training in the real life community)versusconventionalclassroomtrainingintheother group. Twenty-four studies (66.7 %) used multiple baseline measuresand23studiesconductedmultiplesprobesduringthe courseoftheintervention.Follow-updatawereavailablefor23 studies(63.9 %). Periodof follow-up was generallya couple of months,howeverthisvariedfromseveraldaystoafewyearsafter training.Dataregardingthemoments ofassessmentwereoften

notexplicitlyreportedandmomentsalsogreatlyvariedbetween studies and even within studies,with sometimes some partic-ipantsbeingassessedmoreoftenthanothers,withvaryingperiods oftimeinbetween.

3.3.Studyquality

Table2andAppendixDshowtheresultsofthequalityappraisal using the MMAT [29]. Most studies had more nil scores than positive scores, withfive studies meeting only one of the five qualitycriteria(article#1,14,17,22,30)and21studiesmeeting twooutof_five.Fourstudieshadpositiveratingsonthreeoutof_five criteria(article#6,11,16,27),fivestudieshadpositiveratingson fouroutoffivecriteria(article#7,8,9,20,36),andonestudyhad positiveratingsonallqualitycriteria(article#2),Thereasonwhy many studies had lowered ratings was because the sampling strategy,thetargetpopulationand thesample werenot clearly described,andbecausenostatisticalanalyseswereperformed.In randomisedcontrolledstudiesitwasoftenunclearwhetherthe randomisationwascorrectlyperformed,whetherthegroupswere comparable at baseline, and whether outcome assessors were blindedtotheintervention.

3.4.Participantcharacteristics

Data regardingagewerenotalways complete.Insix studies onlytheaverageagewithoutastandarddeviationwasprovided,in fouronlytherange. Basedonthedata thatwereavailable, the average age was found to vary between 18.2–50.3 years. Participants’ages rangedfrom18 to64years.On average,54.5 %ofparticipantswerefemale.Moststudiesincludedbothpeople withmildandmoderateID(n=16),insteadofsolelypeoplewith mild(n=11)ormoderateID(n=9).Itwas,however,notalways clear how the level of ID was determined. Data regarding recruitmentandinclusionandexclusioncriteriawerealsooften notfullyreported(n=33).

3.5.Outcomemeasures

Thespeciﬁcoutcomemeasuresdifferedperstudy,butinmost cases (n = 30; 83.3 %) it concerned to what extent the self-management behaviourtargeted was performed properly (e.g., numberofcorrectlyperformedsteps).Inﬁvestudies,previously developed instruments (e.g., questionnaires) were used, but whetherthesewerevalidatedmeasureswasnotreported(article #1, 4, 11, 14, 23). Twenty-seven studies (75.0 %) assessed participants’behaviourintheirreal-lifesetting.

3.6.Interventioncharacteristics

(5)

Table1

Mainstudyandparticipantcharacteristicsofthestudiesincluded. # Authors

(year)

Country Design(Presenceof controlgroupor multipletraining groups) Setting Participants N Mean(M)age(SD) Gender(%female) LevelofID Target behaviour Time-relatedaspects Numberofsessions Lengthofsession Timespan Provider Individualor group training (groupsize) 1 Crnicetal. (1979)[46]

USA Unclear(no) Grouphome n=17;M=23.4(n/a), 52.9%female;mildID Independent livingskills NOSa 4 18months(mean= 12.1)

Supportstaff Individual

2 Daviesetal. (2003)[47]

USA Within-subjects(no) Unknown n=9;M=25.8(n/a); 44.4%female;mildID Withdrawcash fromATM 1session;20 45 minutes Unknown Individual 3 Daviesetal. (2010)[48] USA Between-subjects (controlgroup) Unknown n=23;M=32.0(10.4); 60.9%female; mild-moderateID Navigateabus route 1session;30 60 minutes Hand-held computer Researcher Individual 4 Dukesetal. (2009)[39]

IRL Multiplecasestudy (no) Unknown n=4;M=22.5(0.6); 50.0%female; moderateID Sexually related decision making 20sessions;45min; twiceaweekfor10 weeks

Unknown Individual

5 Faloonetal. (2008)[36]

USA Casestudy(no) Human services agency

n=1;age=19;0.0% female;mildID

Useofovert andcovert self-rules

3 5sessionsperweek; 30 40minutes

Experimenter Individual

6 Fawetal. (1996)[40]

USA Multiplecasestudy (no) Grouphomes and simulation home n=4;M=22.8(2.2); 25.0%female; mild-moderateID Self-determination skillsin selectinga home

4sessions;1h Trainer Individual

7 Feldman etal.(1999) [49]

CAN Multiplecasestudy (no)

Home n=10;M=28(n/a); 100%female;mildID

Child-care skills

1session Manual Individual

8 Feldman etal.(2012) [42] CAN Randomised controlledtrial (controlgroup) Unknown n=31;M=49.0(7.6); 51.6%female; mild-moderateID Recognition andredressing healthrights violations

Meannumberofsessions =10.89(SD=3.88);2h; twiceaweek

Trainer Group(3)

9 Gilsonetal. (2016)[50]

USA Casestudy(no) Internship jobsite n=1;age=22;0.0% female;levelofID unknown Social interactions andtask engagementat work

30sessions;4h Jobcoach Individual

10 Goodson etal.(2007) [51]

USA Multiplecasestudy (no) Vocational training centre n=4;M=34.8(1.5); 0.0%female;moderate ID

Settingatable 5 6sessionsforvideo prompting,9 13 sessionsfor video-promptingplus error-correction Computer Trainer Individual 11 Hällgren etal.(2005) [52]

SWE Multiplecasestudy (no)

Unknown n=6;M=n/a(n/a); 66.7%female; mild-moderateID

Activitiesof DailyLiving (ADL)

5sessions;3months Occupational therapist

Individual

12 Johnsonetal. (1981)[53]

USA Multiplecasestudy (no) Sheltered workshop n=4;M=32.4(13.7); 25.0%female; mild-moderateID Cookingskills: broiling, baking,boiling 2 12sessionsper subtask(mean=4 6); 5 40minutes(mean= 17) Trainer Individual 13 Katzetal. (1986)[54]

NZL Multiplecasestudy (no)

Grouphome n=9;M=n/a(n/a); 55.6%female; mild-moderateID

Fire-safety skills

20 30sessions Student Individual

14 Kottorpetal. (2003)[55]

SWE Multiplecasestudy (no) Disability Services n=3;M=26.7(3.0); 100%female;moderate ID Activitiesof DailyLiving (ADL)

6 10sessions;4months Occupational therapist

Individual

15 LaCampagne etal.(1987) [56]

USA Multiplecasestudy (no) Day treatment centre n=4;M=30.0(5.4); 75.0%female;mildID

Payingbills 12sessions;1h;12days Trainer Group(4)

16 Lovettetal. (1989)[57] USA Between-group (group1: self-recordingtraining, group2: self-recording, self-evaluation, self-reinforcement training Home n=9;M=27.0(5.2); 55.6%female; mild-moderateID Activitiesof DailyLiving (ADL)

Unknown Trainer Individual

17 Marchetti etal.(1983) [58] USA Randomised controlledtrial (group1:classroom training,group2: communitytraining) Classroomor community n=18;M=41.0(n/a); unknown%female; mild-moderateID Pedestrian skills 40sessions;1.5h;twicea weekfor20weeks

Supportstaff Group(3)

18 Martinetal. (1987)[59]

USA Multiplecasestudy with partial-sequential withdrawal(no) Home n=3;M=31.0(8.9); 66.7%female; mild-moderateID Preparationof breakfastand dinner 50meals;maximumof 3.5months

(6)

Table1(Continued) # Authors

(year)

Country Design(Presenceof controlgroupor multipletraining groups) Setting Participants N Mean(M)age(SD) Gender(%female) LevelofID Target behaviour Time-relatedaspects Numberofsessions Lengthofsession Timespan Provider Individualor group training (groupsize) 19 Matson (1981)[60] USA Randomised controlledtrial (controlgroup) Outpatient Clinicand grocerystore n=20;M=34.0(n/a); 50.0%female;mildID Shopping behaviour 20sessions;1h;20 weekdays Trainer Group(5) 20 Matson (1982)[61] USA Randomised controlledtrial (controlgroup,group 1:modelling training,group2: independence training) Unknown n=45;M=38.4(n/a); 55.6%female;mildID Phone conversational skills

1h;threetimesperweek for2months

Trainer Group (7 8)

21 Matsonetal. (1986)[62]

USA Multiplecasestudy (no) Care institution andgrocery stores n=3;M=41.7(10.6); 0.0%female; mild-moderateID Computational andshopping skills 26sessions;1.5h;twicea weekfor13weeks

Teacher Group(3)

22 McInerney etal.(1992) [63]

USA Within-subjects(no) Shopping malls

n=29;M=n/a(n/a); 69.0%female; mild-moderateID

Useofthebus 60 90minutes;3 5 timesperweek(mean= 2.86sessionsperweek; SD=1.50)for6.58weeks onaverage(SD=4.19) Occupational therapist Group (4 5) 23 Michieetal. (1998)[64] GBR Randomisedblock design(control group,group1: classroomtraining, group2:invivo training) Unknown n=57;M=36.2(12.7); unknown%female; mild-moderateID Community livingskills

180sessions,twiceper week

Unknown Group (4 6)

24 Neefetal. (1990)[65]

USA Casestudy(no) Day habilitation centre, (group) home,and laundromat n=1;age=41;0% female;mild-moderate ID Laundryskills (washingand drying)

3 4timesperweek; 3.4hfordryingand 36.1forwashing Trainer Individual 25 Oresetal. (1984)[66] USA Within-subjects design(no)

Unknown n=10;M=n/a(n/a); 50.0%female; moderateID

Makea telephonecall

1session;48s-5minand 22sdemonstrationtime, 33s-5minpracticetime

Researcher Individual

26 Rehfeldtetal. (2003)[67]

USA Multiplecasestudy (no) Day treatment n=1;age=22;0.0% female;moderateID Makinga sandwich 13sessions Computer Instruction Individual 27 Richman etal.(1984) [68]

USA Multiplecasestudy (no) Home n=1;age=34;100% female;mild-moderate ID Menstrualcare skills 5 15minutes Researcher Supportstaff Individual 28 Risleyetal. (1980)[69]

USA Multiplecasestudy (no) Sheltered workshop n=3;M=37.7(13.2); 33.3%female; mild-moderateID Makingan emergencycall

Meannumberofsessions =6;8 35minutes(M= 13);5perweek

Trainer Individual

29 Sarberetal. (1983)[70]

USA Casestudy(no) Homeand supermarket n=1;age=34;100% female;mildID Menuplanning andgrocery shopping

Unknown Counsellor Individual

30 Sigafoosetal. (2005)[3]

USA Multiplecasestudy (no) Vocational programme n=3;M=35.3(SD= 1.2);0.0%female; moderateID Makeabagof microwave popcorn 25sessions;6 8 minutes;twiceperweek

Computer Trainer Individual 31 Taber-Doughty etal.(2010) [71]

USA Multiplecasestudy withalternating treatment (group1:telecare support,group2: standardcarestaff)

Home n=4;M=49.3(5.9); 25.0%female; mild-moderateID

Household tasks

20sessions;5 7days Supportstaff Telecarestaff Individual 32 Tametal. (2005)[72] HKG Quasi-experimental (group1: conventional training,group2: VirtualReality training) Vocational skillstraining centre n=16;M=18.2(2.3); 50.0%female; moderateID Supermarket shopping

Controlgroup:two30 minsessionsVRgroup: one45minsessionsand one30minsession

Trainer Individual

33 Tayloretal. (1997)[73]

IRL Multiplecasestudy withmulti-element phases(no) Vocational training centreand supermarkets n=7;M=28.7(5.6); 50.0%female;mildID

Shopping 3 4sessionsperweek Trainer Group (3 4)

IRL Multiplecasestudy (group1:Stimulus EquivalenceTraining, group2:Single Instancetraining, group3:Multiple Exemplartraining) Vocational training centreand supermarkets n=6;M=27.2(5.9); 66.7%female;mildID Supermarket shopping 32sessions;45min (individualsession)and 90min(grouptraining); 4daysaweekfor2 months

(7)

interventionthathadbeenpreviouslystudied(article#1,4,8,10, 13,14,18–21,27).Interventionswidelydifferedfromoneanother, using for example classroom training, written or pictorial instructions, video demonstrations, simulations, or electronic devices. Interventions were mostly provided on an individual basis(n=26),withtenstudiesusinggroupinterventions(range3– 8participantsinagroup).Five studiesexplicitlyreportedsome kind of tailoring within their intervention (e.g., tailoring to individual learning preferences), but it is possible that other interventionswerealso(partially)tailored,especiallythosethat wereprovidedindividually.

3.7.Settingandprovider

Thesettingoftheinterventionsvariedbetweenstudies,with halfof theinterventions(partially) takingplace in thereallife setting of the participants (e.g., at home or at work), thereby fosteringthetransferoflearntskillstodailylife.Itwidelyvaried betweenstudieswhotheprovideroftheinterventionwas (e.g., trainer)andmoststudies(n=29)didnotspecifyhowthisperson was instructed to provide the training and what his or her qualiﬁcationswere.

3.8.Lengthandintensity

Thenumberanddurationoftrainingsessionsgreatlydiffered betweeninterventionsanddataaboutthiswereoftenincomplete. Forexample,thenumberofsessionsvariedfrom1to180overa period of 1 day to18 months and information about this was missingforatleasthalfofthestudies.Sessionlengthwasmostly lessthan1(n=9)or2h(n=8),althoughfor16studiesnodatawere available.Threestudiesprovided‘booster’sessionsforparticipants who were lagging behind (article #8,16, 26) and four studies providedfollow-upsessionsafterthetraining(article#1,6,12,36). 3.9.Behaviouralchangetechniques

ToobtainanoverviewoftheBCTsthatwereappliedtoattain thetargetedself-managementbehaviour,weanalysedperstudy which antecedent BCTs preceded the desired self-management behaviourof participantsand which consequent BCTsfollowed afterwards[AppendixB;[25][30],].Wealsomadeadistinction whetherBCTswereappliedbytheparticipantorbytheproviderof theintervention(Table2).

Allinterventionsaimedtopromoteself-managementbymeans oftheprovideroftheintervention,whoappliedarangeofBCTsto helptheparticipantsreachthetargetedself-management behav-iour(n=34).AcommoncombinationofBCTsprecedingthedesired self-managementbehaviourofparticipants(12/36studies,33.3%) concernedtheprovidermodellingthetargetedbehaviourorskill,

givinginstructions,andprovidingprompts(e.g.,avisual/auditory cue, least-to-mostprompting).These threeBCTs werenot only providedverbally,butsometimesalsovisually(e.g.,withtheuseof a pictorial manual, videos, or gestures). In nine studies, the provider encouraged the generalisation of the targeted self-management behaviour to another situation (e.g., a different supermarket;article#6,8,17,22,24,28,33,36).Lessfrequently antecedentBCTsappliedincludedchaining(article#15,22,23,27), physicalguidance(e.g.,holdingsomeone’shandwhileexecutinga task;article#12,13,28,34,36),androle-play(article#6,8,9,23, 32,34).ConsequentBCTsthatwereappliedbytheproviderthat followedtheexecutionofthedesiredself-managementbehaviour mostlyconcernedgivingfeedback(n=29),whichcouldbefurther distinguished into praise, corrective feedback, or descriptive feedback. Often a combination of these types of feedback was used (16/36 studies, 44.4 %). In nine cases, some kind of reinforcementwasprovided(e.g.,aconsumableoractivity;article #7,12,13,16,17,20,21,23,32).

Several studies (n = 13) trained participants to apply BCTs themselvestoattainthetargetedself-managementbehaviour.The antecedent BCTs that were taught concerned the use of self-instructions(article#5,7,18,23,33,36)orenvironmentalcues (article#3,22).ConsequentBCTsappliedbyparticipantsregarded someformofself-recordingorself-monitoringoftheperformed self-management behaviour, followed by self-evaluation of the performance and self-reinforcement(article#16,19, 20, 21), or praise(article#5,13,33).

3.10.Interventioneffectiveness

Althoughquantitativedataonresultswasmissingor incom-pleteinalmosthalfof thestudies,allstudiesreportedthatthe interventionsappliedwereeffective,whichgenerallymeantthat participants were better able to execute the self-management behaviour targeted properly and independently after training. Twenty-fourstudiescollectedfollow-updataandtwentyofthese foundthattrainingeffectsmaintainedoverthefollow-upperiod. All15studies(41.7%)thatexaminedwhetherparticipantswere abletoexecutetheself-managementbehaviourtrainedinother settings(e.g.,doinggroceriesatanunfamiliarsupermarket)found evidenceforsuchgeneralisationeffects.Studiesthatincludeda no-treatment control group all found that participants from the traininggroupsperformedbetterthanthecontrolgroup(article #3,8,19,20, 23),both immediatelyaftertraining aswellasat follow-up(incasefollow-updatawereavailable).Instudieswith several training groups, results were mixed. Two studies only reportedasigniﬁcantimprovementinthecommunityorinvivo traininggroup,butnotintheclassroomgroup(article#17,23). Otherstudiesfoundthattraininggroupsimprovedequally(article #32,34)orthatbothtraininggroupsimprovedperformancebut

(year)

Country Design(Presenceof controlgroupor multipletraining groups) Setting Participants N Mean(M)age(SD) Gender(%female) LevelofID Target behaviour Time-relatedaspects Numberofsessions Lengthofsession Timespan Provider Individualor group training (groupsize) 35 Wackeretal. (1986)[75]

USA Casestudy(no) Schooland jobsite

n=1;age=19);100% female;moderateID

ClericalTasks 40sessions;2h Job coordinator

Individual 36 Wuetal.

(2016)[76]

USA Multiplecasestudy (no) School n=2;M=18.5(0.7); 50%female; mild-moderateID Dailyliving skills 13or40sessions;15 30 minutes Trainer Individual

n/a=notavailable.

(8)

Table2

Interventioncharacteristicsoftheincludedstudies. # Authors

(year)

Targetbehaviour BehaviourChangeTechniques Mainresults Quality appraisal Appliedbyparticipant Appliedbyprovider

Antecedent Consequent Antecedent Consequent 1 Crnicetal.

(1979)[46]

Independent livingskillsNOSa

Unknown Unknown Unknown Unknown Outcome:Improvedskillsinpersonal maintenance,clothingcare,home maintenance,foodpreparation,time management,socialbehaviour, communityutilisation,communication, andacademicfunctioning.

Generalisationtodailylife:yes Follow-up:notmeasured

1/5

2 Daviesetal. (2003)[47]

Withdrawcash fromATM

n/a n/a Instruction Modelling Prompts

Feedback(NOSa

) Outcome:Fewerrequiredhelpprompts andfewererrors.

5/5 3 Daviesetal. (2010)[48] Navigateabus route Useofcues (picturesand audio messages) n/a Instruction Prompts Feedback (descriptive)

Outcome:Experimentalgroupwasmore successfulatcompletingabusroute, madelesserrorsandneededless landmarkingpromptsvs.controlgroup. Generalisationtodailylife:yes Follow-up:notmeasured

2/5

4 Dukesetal. (2009)[39]

Sexuallyrelated decisionmaking

Unknown Unknown Unknown Unknown Outcome:Improvedknowledgeofhuman sexualityandsafetypracticesand improveddecision-makingcapacity. Generalisationtodailylife:notmeasured Followup:Maintenanceofeffectsfor safetypractices,somedecayin knowledge.

2/5

5 Faloonetal. (2008)[36]

Useofovertand covertself-rules Self-instruction Feedback (praise) Instruction Modelling Prompts Feedback (corrective, praise)

Outcome:Accuracyimprovedafterovert andcovertself-instructiontraining. Performancedecreasedduringovertand covertblockingsessions.

2/5 6 Fawetal. (1996)[40] Self-determination skillsinselecting ahome

n/a n/a Generalisation Instruction Modelling Prompts Roleplay Feedback (descriptive, instructive, praise)

Outcome:Increaseinskillsregarding askingpreferencequestions,reporting information,andevaluatinghomes. Generalisationtodailylife:yes Followup:Performanceswere maintained.

3/5

7 Feldman etal.(1999) [49]

Child-careskills Self-instruction n/a Instruction Feedback(NOSa

), Modelling, Reinforcement (NOSa

)

Outcome:Increasedchild-careskillsto normallevelsformostmothersand child-careskills.Highermeanpercentage correctaftertraining.

Generalisationtodailylife:yes Follow-up:Evenhighermeanpercentage correct,skillsweremaintained.

4/5 8 Feldman etal.(2012) [41] Recognitionand redressinghealth rightsviolations

n/a n/a Generalisation Instruction Modelling Prompts Roleplay

Feedback(praise) Outcome:Traininggrouphadmore correctresponsestovideoscenarios showinghealthrights,respect,or responsibilitysituationsvs.controlgroup. Generalisationtodailylife:yes Follow-up:Improvementswere maintained. 4/5 9 Gilsonetal. (2016)[50] Social interactionsand taskengagement atwork

n/a n/a Instruction Modelling Prompts Roleplay Feedback (corrective, praise)

Outcome:Socialinteractionsincreased modestlyandhightaskengagement maintainedwhenjobcoachesreduced proximityanddeliveredprompts discretely.

4/5

10 Goodson etal.(2007) [51]

Settingatable n/a n/a Instruction Modelling

Feedback (corrective)

Outcome:Accuracyinsettingthetable improvedfrom0 60%(baseline)to100% afteravideopromptingpluserror correctionprocedure.

2/5 11 Hällgren etal.(2005) [52] ActivitiesofDaily Living(ADL)

n/a n/a Unknown Feedback(NOSa

) Outcome:ADLperformanceimprovedin ﬁveoutofsixparticipantsafterthe intervention,bothregardingmotorand processskills.

Generalisationtodailylife:yes Follow-up:Improvementswere maintained.

(9)

(year)

Antecedent Consequent Antecedent Consequent 12 Johnsonetal.

(1981)[53]

Cookingskills: broiling,baking, boiling

n/a n/a Instruction Modelling Physical guidance Prompts Feedback (descriptive, praise) Reinforcement (reward)

Outcome:Relativelyquickacquisitionof cookingskillsoncetraininginitiated. Threeoutoffourparticipantsshowed generalisationeffectswithinandbetween thecookingmethods.

Generalisationtodailylife:notmeasured Follow-up:Relativelyhighmaintenanceof cookingskills.

2/5

13 Katzetal. (1986)[54]

Fire-safetyskills n/a Feedback (praise) Instruction Modelling Physical guidance Prompts Feedback (corrective, descriptive, praise) Reinforcement (reward)

Outcome:Formostparticipants,perfect masteryoffire-safetyskillsaftertraining andsignificantlyincreasedknowledgeand understandingoffire-safetybehaviour. Generalisationtodailylife:yes Follow-up:Mostparticipantsmaintained perfectmastery. 2/5 14 Kottorpetal. (2003)[55] ActivitiesofDaily Living(ADL)

n/a n/a Compensatory techniques (NOSa₎

Environmental restructuring

Feedback(NOSa

) Outcome:Theinterventionhaddifferent impactsacrossparticipants.Generally, ADLprocessabilityimproved,buteffects onADLmotorabilityandawarenessof disabilitywerequestionable. Generalisationtodailylife:yes Follow-up:Improvementsweremaintained.

1/5

15 LaCampagne etal.(1987) [56]

Payingbills n/a n/a Chaining Instruction Modelling

Feedback(NOSa

) Outcome:Fewerrorsinpayingbillsafter training,comparedtomanyerrorsat baseline.Skillsgeneralisedtountrained bills.

Generalisationtodailylife:notmeasured Follow-up:Skillsweremaintained.

2/5 16 Lovettetal. (1989)[57] ActivitiesofDaily Living(ADL) n/a Feedback (NOSa ) Self-evaluation Self-recording Self-reinforcement Instruction Modelling Feedback(NOSa ) Reinforcement (reward)

Outcome:ImprovedADLperformance compared tobaseline.Group2 (several BCTs) generallyperformedbetterthanGroup1 (self-recordingonly)andperformedslightly betterduringmaintenancephase,but receivedmoretraining.

Generalisationtodailylife:yes

Follow-up:HigherADLtaskcompletionfor allparticipantsduringlong-termfollow-up vs.baseline.

3/5

17 Marchetti etal.(1983) [58]

Pedestrianskills n/a n/a Generalisation Prompts

Feedback(praise) Reinforcement (socialNOSa

)

Outcome:Communitytraininggroup signiﬁcantlyimprovedpedestrianskills. NosigniﬁcantchangeintheClassroom group.

1/5 18 Martinetal. (1987)[59] Preparationof breakfastand dinner

Self-instruction n/a Instruction Prompts

Feedback (corrective, praise)

Outcome:Rapidimprovementinfood preparationskillswiththeuseofpicture recipecards.

Generalisationtodailylife:yes Follow-up:Twoparticipantsmaintained highperformance,fortheotheritwas variable,butsatisfactory.

2/5

19 Matson (1981)[60]

Shoppingskills n/a Self-evaluation Instruction Modelling Feedback (descriptive, praise)

Outcome:Interventiongroupimproved shoppingskills,whichgeneralisedto anotherstore.Thecontrolgroupdidnot improve.

Generalisationtodailylife:yes Follow-up:Interventiongroup maintainedgainsandgeneralisation effects. 2/5 20 Matson (1982)[61] Phone conversational skills n/a Self-evaluation Self-monitoring Instruction Modelling Shaping Feedback (corrective, descriptive, praise) Reinforcement (socialNOSa₎

Outcome:Independencetraininggroup hadbetterconversationalskillsthanthe modellingandthecontrolgroup. Modellinggroupperformedbetterthan thecontrolgroup.

Generalisationtodailylife:notmeasured. Follow-up:Resultsweresimilarto immediateoutcomes. 4/5 21 Matsonetal. (1986)[62] Computational andshopping skills n/a Self-evaluation Instruction Modelling Feedback (descriptive, praise) Reinforcement (socialand tangibleNOSa )

Outcome:Computationalandshopping skillsrapidlyimprovedafterinitiationof intervention.Skillsgeneralisedtoother stores.

Generalisationtodailylife:yes Follow-up:Improvementswere maintained.

(10)

(year)

Antecedent Consequent Antecedent Consequent 22 McInerney

etal.(1992) [63]

Useofthebus Useofcues (environmental landmarks n/a Chaining Generalisation Feedback (corrective, praise)

Outcome:Onlyfollow-upmeasureswere used.

Generalisationtodailylife:yes Follow-up:Participantsmaintainedtheir mobilityskillsregardingmakingleisure outingsbybus. 1/5 23 Michieetal. (1998)[64] Communityliving skills

Self-instruction n/a Chaining Instruction Modelling Prompts Roleplay Shaping Reinforcement (socialNOSa )

Outcome:In-vivotraininggroup performedbetteroncommunityliving skillsandadaptivebehaviourvs.theother groups,andscoredhigheronindependent functioningandsocialisationvs.the controlgroup.Classroomgrouponly performedbetterregardinglibraryusevs. thecontrolgroup.

Generalisationtodailylife:yes Follow-up:Resultsweresimilarto immediateoutcomes. 2/5 24 Neefetal. (1990)[65] Laundryskills (washingand drying)

n/a n/a Generalisation Modelling

Outcome:Accuracyonthesinglecase machineimprovedfrom70 83%at baselineto100%atpost-training. Performanceongeneralcasemachines improvedfrom60 83%to92 95%. Generalisationtountrainedmachinesonly occurredaftergeneralcaseinstruction. Generalisationtodailylife:yes Follow-up:notmeasured

2/5

25 Oresetal. (1984)[66]

Makeatelephone call

n/a n/a Modelling n/a Outcome:Nineoutoftenparticipants wereabletodialsuccessfullyimmediately aftertraining.

Generalisationtodailylife:notmeasured Follow-up:Resultsweresimilarto immediateoutcomes. 2/5 26 Rehfeldtetal. (2003)[67] Makinga sandwich

n/a n/a Modelling Feedback(praise) Outcome:Rapidmasteryofmeal preparationskilloncetraininginitiated. Skillgeneralisationacrosssettings. Generalisationtodailylife:notmeasured Follow-up:Skillwasmaintained.

2/5 27 Richman etal.(1984) [68] Menstrualcare skills

n/a n/a Chaining Instruction Prompts

Outcome:Performanceimproved substantiallyaftertraininginitiated.100% correctperformancemaintainedonthe validationandmaintenancesession. Generalisationtodailylife:yes Follow-up:Maintenanceofahighlevelof responding. 3/5 28 Risleyetal. (1980)[69] Makingan emergencycall

n/a n/a Generalisation Instruction Modelling Physical guidance Feedback (corrective, descriptive, praise)

Outcome:Performanceimprovedafter traininginitiated.Skillgeneralisationto otheremergencyparties.

Generalisationtodailylife:notmeasured Follow-up:Resultsweresimilarto immediateoutcomes 2/5 29 Sarberetal. (1983)[70] Menuplanning andgrocery shopping

n/a n/a Instruction Modelling Prompt

Outcome:Improvedperformanceon planningnutritiousmealsfrom0%to 100%aftercompletionofintervention. Groceryshoppingskillsimprovedfrom 25 72.5%to100%post-intervention. Generalisationtodailylife:yes Follow-up:Mealplanningandgrocery shoppingskillsvariedfrom92.5 100%.

2/5 30 Sigafoosetal. (2005)[3] Makeabagof microwave popcorn

n/a n/a Instruction Modelling

n/a Outcome:Twooutofthreeparticipants improvedfrom0 30%atbaselineto100% independence after video prompting started. Generalisationtodailylife:no

Follow-up:Independencerangedfrom 80 100%. 1/5 31 Taber-Doughty etal.(2010) [71]

Householdtasks n/a n/a Instruction Prompts

n/a Outcome:Slightlymoreindependent performancewhenpromptedbyatelecare providervs.astandardcareprovider. Generalisationtodailylife:yes Follow-up:Resultswerevariable.

2/5

32 Tametal. (2005)[72]

Supermarket shopping

n/a n/a Instruction Modelling Roleplay Feedback(NOSa ) Reinforcement (verbalNOSa₎

Outcome:Conventionaltrainingand VirtualReality(VR)groupshoweda signiﬁcantandsimilarimprovementin shoppingskills.

(11)

withonegroupoutperformingtheother(article#16,20,31).In twooftheselattercases(article#16,20),thegroupwiththemost improvementreceivedaninterventionthatusedmoreBCTsthan theothertraininggroup(e.g.,notjustself-recording,butalso self-evaluationandself-reinforcement).

4.Discussionandconclusion 4.1.Discussion

Thissystematicreviewanalysedstudiesoninterventionsthat aimtopromoteself-managementindailylifeforadultswithmild tomoderateID.Wedescribedtheeffectivenessof the interven-tions,aswellastheBCTsthatwereusedtoattainthedesired self-managementbehaviour.In allthestudiesincluded,theauthors reportedthat theself-managementinterventionswereeffective andthatthepositiveeffectsweregenerallymaintainedovertime. Allstudiesthatmeasuredgeneralisationeffectsfoundthatthe self-managementbehaviourtrainedwasgeneralisedtoothertasksor (dailylife)situations.Withregard totheBCTs,allinterventions involvedBCTs appliedbytheproviderof theintervention (e.g., trainer); in addition, one third of interventions also involved trainingparticipantswithIDtoapplyBCTsthemselves.Antecedent BCTsappliedbyparticipantsincludedself-instructionsandtheuse of cues; consequent BCTs included self-monitoring of the executionofthetargetbehaviourandself-reinforcement.Inmost

studies(n=32),providerscombinedseveralantecedentBCTs,such asmodelling,instructing,andprompting,withseveralconsequent BCTssuchasprovidingfeedbackorreinforcement.Theﬁndings seemtoimplythatinterventionscanpromoteself-managementin people with mild to moderate ID, irrespective of the self-management behaviourtargeted and the characteristics of the intervention.

This review extends previous reviews that only analysed interventions for people with ID that targeted a specific self-managementdomain[e.g.,18,22]orBCT[e.g.,8,24].Inlinewith previous reviews, the self-management interventions included showed positiveresults,butit wasdifficulttodeterminewhich factors contributed to the effectiveness of the interventions. Previousstudieshavesuggestedthat acombination ofmultiple BCTs is most effective in promoting behaviour change [18,31]. However, it is as yet unknown which particular combinations mightbeespeciallyeffectiveforthispopulation.Ourfindingthat theinterventionsstudiedwereconsideredeffectiveispromising, asthissuggeststhatpeoplewithmildtomoderateIDcanimprove their self-management in daily life, regardless of the target behaviour, the specific intervention characteristics, and BCTs applied.ItseemsthataslongaspeoplewithmildtomoderateID are providedwithaself-managementtraining, theyareableto managetheiraffairsmoreindependently,regardlessofthetypeof affairs or self-management behaviour targeted. However, the findingthat allinterventionswerereportedtobeeffectivealso

(year)

Antecedent Consequent Antecedent Consequent 33 Tayloretal.

(1997)[73]

Shopping Self-instruction Feedback (descriptive, praise)

Instruction Modelling Prompts

n/a Outcome:InPhase1,successful performanceofshoppingtaskacross trainingandgeneralisationstoresusing overtandcovertself-instruction.Blocking ofovertandcovertself-instruction resultedinreversaltobaselinelevels.In Phase2,successfulperformanceof shoppingtaskusingself-rules.Highlevels oftaskanalysisrespondingcorresponded withhighlevelsofself-instruction.Similar resultsinthegeneralisationsettings. Generalisationtodailylife:yes Follow-up:notmeasured

2/5

Supermarket shopping

n/a n/a Generalisation Instruction Modelling Physical guidance Prompts Roleplay Feedback (corrective,praise

Outcome:Allparticipantsreached criterionrespondinginsupermarket trainingsettingswithlittledifference betweengroups.Stimulusequivalence trainingandMultipleexemplartraining wereequallyeffectiveinpromoting generalisation,singleinstancetraining wastheleasteffective.

2/5

35 Wackeretal. (1986)[75]

ClericalTasks n/a n/a Modelling Feedback (corrective, praise)

Outcome:90%ofsheetswerecopied correctly.Substantialincreasein incidentalbehaviours,indicatingamore appropriateinteractionwiththework environment.

2/5

36 Wuetal. (2016)[76]

Dailylivingskills Self-instruction n/a Generalisation Modelling Physical guidance Prompts Feedback (corrective)

Outcome:Allparticipantsacquireda varietyofdailylivingskillsusingvideo prompting.

Generalisationtodailylife:yes Follow-up:100%accuracywas maintained.

4/5

n/a=notapplicable.

(12)

suggestsapossiblepublicationbias[32].Thistypeofbiasisfurther increasedbecauseweonlyincludedarticlesandnobookchapters ordissertations.Inaddition,studiesweregenerallyofmoderate quality,which is commonin thefield ofID [27,33], and which furthersuggestsahighriskofbias.Samplesizeswereoftenvery small,twothirdsofstudiesuseda(multiple)casestudydesign; andonlytenstudiesincludedacontrolgroup.Notably,quantitative dataonresultswasoftenmissingorincomplete.Asaresult,the interpretationandgeneralisationofthepositivefindingsmustbe conductedwithgreatcaution,andhencenofirmconclusionscan bedrawn.

RegardingtheBCTsusedtoattain thetargeted self-manage-mentbehaviour,inthereviewedinterventionsitwasfoundthatin mostcasesBCTswereonlyappliedbytheinterventionprovider. This meansthat most of the time when people with ID were trainedtopromotetheirself-management,theywerestilllargely dependent on the provider of the training. One could argue however,thatamoreeffectiveandefﬁcientwaytopromoteoverall self-managementinpeoplewithIDistoteachthemtoapplyBCTs orstrategies themselves,suchasself-instructions, self-rules, or generalproblemsolving.Thiscouldreducetheneedforproximity ofaprovider[34].Especiallysincesupportstaffalreadyfeelthey cannotprovidethequalityofcarethatisneededforpeoplewithID [35],adecreaseddependenceonthesupportproviderisimportant toconsiderinself-managementinterventions.Furthermore,BCTs usedby participantsthemselves canmore easily beapplied to otherself-managementtasksor situations[34,36–38], although whetherthiswilloccurmaydependonthecognitivelevelofthe personwithID.

If generalisation of BCTs is tobeachieved, this needstobe targeted in interventions. However, even in the interventions reviewedinwhichBCTswereappliedbyparticipants,theyonly focusedontheapplicationofBCTsforspecificbehaviours.These behavioursoftenconcernedveryspecificpracticalskillsnecessary at home or in the community, such as preparing food or withdrawing money.Looking at the quality of life domains as proposed by Schalock [39], the focus of self-management interventionsforpeoplewithIDhasmostlybeenlimitedtothe domains of personal development, material wellbeing, and physical wellbeing. Domains such as interpersonal relations, self-determination,socialinclusion,andrights,ontheotherhand, werehardlyaddressedintheinterventionsreviewed.Onlythree interventionstargeted self-determinationor rights [40–42], but theseagain onlyfocused ona specificdomainor context (e.g., making sexuality-related decisions). Therefore, to promote the overallqualityoflifeofpeoplewithID,interventionsmayneedto gobeyondtrainingindividualpracticalskillsandmayalsoneedto focusonotherimportantdomainsinlife,suchasself-management atworkandinsocialinteractions.

4.2.Limitations

Oneimitationofthisstudyisthatgiventheheterogeneityin studydesigns,typesofinterventions, andoutcomemeasures,it wasonlypossibletoconductasystematicreviewandnota meta-analysis,. In addition,we could notanalyse which factors (e.g., participantorstudycharacteristics)contributedtothe effective-nessofinterventions,andhowandtowhatextentthesefactors contributed.Wealsocouldnotanalysewhetherinterventionsin which BCTs were applied by participants with ID were more effectivethanthose in which theBCTs weresolely (ormainly) applied by the providers. Reasons for this were that all interventionswere found to be effective, that sometimes only qualitative descriptions of results were reported, and that quantitativedata(e.g.,effectsizes)wereoftenincomplete.Other importantinformationwasalsooftennotreported.Thisincluded

information regarding age, diagnosis of ID, recruitment of participants,inclusionandexclusioncriteria,momentsof assess-ment,anytailoringofinterventions,theprovider,thelengthand intensity of the intervention, and the BCTs applied. All this hamperstheaggregationofdataandthusthedeductionoffactors contributing tointerventions’effectiveness,aswellasa further examinationofthespecificgroupsofpeoplewithIDforwhich interventionsareparticularlyeffective.Also,thetotalsamplesize ofallthestudiesreviewedwasrelativelysmall,whichlimitsthe generalisabilityofourfindings.Theabovementionedlimitations commonlyaffectnotonlystudiesonself-management interven-tions, butalsoothertypes ofstudiesin the_fieldof ID,suchas studiesonlifestylechangeinterventions[27,33].

For future studies on self-management interventions we recommendprovidingmoredetailedinformationabouttheresults andtheparticipantand interventioncharacteristics.Inaddition, giventhefrequentoccurrenceinthisﬁeldofrelativelylow-quality studies,thereisaneedforstudiesofhighqualityandwithalow risk of bias (e.g., by including larger samples and applying randomisationtechniques). Aspects toconsider in future inter-ventionscouldbethewiderapplicationofBCTsbypeoplewithID themselves,withtheaimofpromotingoverallself-management andqualityoflife,ratherthansolelytargetingaparticularpractical skill.Thetransfer andgeneralisation of thetargetbehaviourto dailylifeandacrosssettingsmayalsoneedtobeincorporatedin theinterventions,aswellasintheassessmentoftheintervention outcomes.Futurestudiescouldalsofurtherexploree-healthor m-health interventions[43],for examplebycreating self-manage-ment apps for tablets and mobile phones [44]. This mayhelp people with ID to easily apply BCTs in all kinds of everyday situationswithouthavingtobedependentontheavailabilityof theirsupportstaffandrelatives[45].ForsomepeoplewithIDthis mayrequirepriorself-managementtraininginusingcomputers, tablets,andmobilephones,aswellasinhandlingtheinternetand itspotentialdangers(e.g.,unreliablewebsitesandcontacts)[44]. 4.3.Conclusion

Insum,thisreviewdescribedabroadrangeofinterventionsfor peoplewithmildtomoderateIDaimedatpromotingtheir self-management in daily life; at thesame time, we evaluated the effectiveness of the interventions and the BCTs applied. Inter-ventionsgenerallytargetedaparticularskillbyusinga combina-tionofseveralBCTs,mainlyappliedbytheproviderofthetraining. Althoughtheresultsmustbeinterpretedwithcautionduetothe moderatemethodologicalqualityofmoststudiesandtheresulting highriskofbias,thefindingthatallinterventionswerereportedto beeffectiveseemstosuggestthatadditionaltrainingcanaidinthe promotionofself-managementinpeoplewithmildtomoderate ID, regardless of the specific skill trained and the type of interventionprovided.Furtherresearchisnecessarytostudythe interventions’ effectiveness more thoroughly, for example by examiningwhatfactorscontributetotheeffectsofinterventions andwhichtypeofinterventioniseffectiveforwhichsubgroupof peoplewithID.Thisrequiresmorespecificinformationaboutthe participants(e.g., diagnosisof ID,comorbidities)and the inter-ventions(e.g.,BCTsapplied).Furthermore,itisrecommendedthat self-managementinterventionstargetmorediversequalityoflife domains[39].

Sourceoffunding

(13)

DeclarationofCompetingInterest

Theauthorsdeclarethattheyhavenoconﬂictofinterest. Acknowledgements

WethankJanSchoonesoftheLeidenUniversityMedicalCenter forhishelpindevelopingthesearchstrategy.

AppendixA.Supplementarydata

Supplementarymaterialrelatedtothisarticlecanbefound,inthe onlineversion,atdoi:https://doi.org/10.1016/j.pec.2020.06.009. References

[1]UnitedNations,Convention of theRightsofPersons WithPersons With Disabilities,(2006).

[2]J.Sandjojo,W.A.Gebhardt,A.M.E.E.Zedlitz,J.Hoekman,J.A.denHaan,A.W.M. Evers,Promotingindependenceofpeoplewithintellectualdisabilities:Afocus groupstudy.Perspectivesfrompeoplewithintellectualdisabilities,legal representatives,andsupportstaff,JPolicyPractIntellectDisabil(inpress). [3]J.Sigafoos,M.O’Reilly,H.Cannella,M.Upadhyaya,C.Edrisinha,G.E.Lancioni,A.

Hundley,A.Andrews,C.Garver,D.Young,Computer-presentedvideo promptingforteachingmicrowaveovenusetothreeadultswith developmentaldisabilities,JBehavlEduc14(2005)189–201.

[4]T.VanLaarhoven,T.VanLaarhoven-Myers,Comparisonofthreevideo-based instructionalproceduresforteachingdailylivingskillstopersonswith developmentaldisabilities,Educ.Train.Dev.Disabil.41(2006)365–381. [5]AmericanPsychiatricAssociation,DiagnosticandStatisticalManualofMental

Disorders,5thed.,AmericanPsychiatricAssociation,Washington,DC,2013. [6]J.C.E. Dusseljee, P.M. Rijken, M. Cardol, L.M.G. Curfs, P.P. Groenewegen,

Participationindaytimeactivitiesamongpeoplewithmildormoderate intellectualdisability,J.Intellect.Disabil.Res.55(2011)4–18.

[7]S.Ramdoss,R.Lang,C.Fragale,C.Britt,M.O’Reilly,J.Sigafoos,R.Didden,A. Palmen,G.E.Lancioni,Useofcomputer-basedinterventionstopromotedaily livingskillsinindividualswithintellectualdisabilities:asystematicreview,J. Dev.Phys.Disabil.24(2012)197–215.

[8]K.A.Smith,S.B.Shepley,J.L.Alexander,K.M.Ayres,Theindependentuseof self-instructionsfortheacquisitionofuntrainedmulti-steptasksforindividuals withanintellectualdisability:areviewoftheliterature,Res.Dev.Disabil.40 (2015)19–30.

[9]R.J. Bond, J. Hurst, How adults with learning disabilities view living independently,BritJLearnDisabil38(2010)286–292.

[10]A.Haigh,D.Lee,C.Shaw,M.Hawthorne,S.Chamberlain,D.W.Newman,Z. Clarke,N.Beail,Whatthingsmakepeoplewithalearningdisabilityhappyand satisﬁedwiththeirlives:aninclusiveresearchproject,J.Appl.Res.Intellect. Disabil.26(2013)26–33.

[11]N.M.J.Kuijken, J. Naaldenberg,M.W.Nijhuis-van der Sanden,H.M.J. Van Schrojenstein-LantmandeValk,Healthylivingaccordingtoadultswith intellectualdisabilities:towardstailoringhealthpromotioninitiatives,J. Intellect.Disabil.Res.60(2016)228–241.

[12] C.A.Dollar,L.D.Fredrick,P.A.Alberto,J.K.Luke,Usingsimultaneousprompting toteachindependentlivingandleisureskillstoadultswithsevereintellectual disabilities,Res.Dev.Disabil.33(2012)189–195.

[13]D.García-Villamisar, J. Dattilo,J.L.Matson, Qualityof lifeasa mediator betweenbehavioralchallengesandautistictraitsforadultswithintellectual disabilities,Res.AutismSpectr.Disord.7(2013)624–629.

[14]D.M.Browder,E.S.Shapiro,Applicationsofself-managementtoindividuals withseverehandicaps:areview,J.Assoc.Pers.Sev.Handicaps10(1985)200– 208.

[15]J.Sandjojo,A.M.E.E.Zedlitz,W.A.Gebhardt,J.Hoekman,E.Dusseldorp,J.A.den Haan,A.W.M.Evers,Trainingstafftopromoteself-managementinpeoplewith intellectualdisabilities,J.Appl.Res.Intellect.Disabil.31(2018)840–850. [16]M.L.Wehmeyer,K. Kelchner, S.Richards,Essentialcharacteristics ofself

determinedbehaviorofindividualswithmentalretardation,Am.J.Ment. Retard.100(1996)632–642.

[17]M.L.Wehmeyer,B.H.Abery,Self-determinationandchoice,Intellect.Dev. Disabil.51(2013)399–411.

[18]C.B.Gilson,E.W.Carter,E.E.Biggs,Systematicreviewofinstructional methodstoteachemploymentskillstosecondarystudentswithintellectual anddevelopmentaldisabilities,Res.Pract.PersonsSevere42(2017)89– 107.

[19]G.E. Lancioni, M.F. O’Reilly, Self-management of instruction cues for occupation:reviewofstudieswithpeoplewithsevereandprofound developmentaldisabilities,Res.Dev.Disabil.22(2001)41–65.

[20]F.R.Rusch,J.Dattilo,Employmentandself-management:A.meta-evaluation ofsevenliteraturereviews,Intellect.Dev.Disabil.50(2012)69–75. [21] K.Storey,Reviewofresearchonself-managementinterventionsinsupported

employmentsettingsforemployeeswithdisabilities,CareerDevExcept Individ30(2007)27–34.

[22]M. Dannenberg, S.E. Mengoni, B. Gates, M. Durand, Self-management interventionsforepilepsyinpeoplewithintellectualdisabilities:ascoping review,Seizure41(2016)16–25.

[23]L.Graham,J.Wright,R.Walwyn,A.M.Russell,L.Bryant,A.Farrin,A.House, Measurementofadherenceinarandomisedcontrolledtrialofacomplex intervention:supportedself-managementforadultswithlearningdisability andtype2diabetes,BMCMed.Res.Methodol.16(2016)132.

[24]T. Koyama,H.T. Wang,Useofactivityscheduleto promote independent performanceofindividualswithautismandotherintellectualdisabilities:a review,Res.Dev.Disabil.32(2011)2235–2242.

[25]S.Michie,S.Ashford,F.F.Sniehotta,S.U.Dombrowski,A.Bishop,D.P.French,A reﬁnedtaxonomyofbehaviourchangetechniquestohelppeoplechangetheir physicalactivityandhealthyeatingbehaviours:theCALO-REtaxonomy, Psychol.Health26(2011)1479–1498.

[26]S.Michie,M.Richardson,M.Johnston,C.Abraham,J.Francis,W.Hardeman,M. P.Eccles,J.Cane,C.E.Wood,Thebehaviorchangetechniquetaxonomy(v1)of 93hierarchicallyclusteredtechniques:buildinganinternationalconsensusfor thereportingofbehaviorchangeinterventions,Ann.Behav.Med.46(2013) 81–95.

[27]M.Willems,T.I.M.Hilgenkamp,E.Havik,A.Waninge,C.A.Melville,Useof behaviourchangetechniquesinlifestylechangeinterventionsforpeoplewith intellectualdisabilities:asystematicreview,Res.Dev.Disabil.60(2017)256– 268.

[28]D.Moher,A.Liberati,J.Tetzlaff,D.G.Altman,PrismaGroup,Preferredreporting itemsforsystematicreviewsandmeta-analyses:thePRISMAstatement,PLoS Med.6(2009)e1000097.

[29]Q.N. Hong,P. Pluye, S.Fàbregues,G. Bartlett,F. Boardman,M.Cargo,P. Dagenais,M.Gagnon,F.Grifﬁths,B.Nicolau,A.O’Cathain,M.Rousseau,I. Vedel,MixedMethodsAppraisalTool(MMAT)Version2018-UserGuide, (2018) mixedmethodsappraisaltoolpublic.pbworks.com.(Accessed01Dec 2019..

[30]R.Didden,P.Duker,D.Seys,GedragsanalyseEn-therapieBijMensenMetEen VerstandelijkeBeperking,2nded.,Elseviergezondheidszorg,Maarssen,2003. [31]T.L.Webb,J.Joseph,L.Yardley,S.Michie,Usingtheinternettopromotehealth

behaviorchange:asystematicreviewandmeta-analysisoftheimpactof theoreticalbasis,useofbehaviorchangetechniques,andmodeofdeliveryon efﬁcacy,J.Med.InternetRes.12(2010)1–18.

[32]K.Dwan,D.Altman,J.Arnaiz,J.Bloom,A.Chan,E.Cronin,E.Decullier,P. Easterbrook,E.VonElm,C.Gamble,D.Ghersi,J.Ioannidis,J.Simes,P. Williamson,Systematicreviewoftheempiricalevidenceofstudypublication biasandoutcomereportingbias,PLoSOne3(2008)e3081.

[33]K.A.Smith,K.A.Ayres,J.Alexander,J.R.Ledford, C.Shepley,S.B.Shepley, Initiationandgeneralizationofself-instructionalskillsinadolescentswith autismandintellectualdisability,J.AutismDev.Disord.46(2016)1196–1209. [34]M.A.Hermsen,P.Embregts,A.H.C.Hendriks,N.Frielink,Thehumandegreeof care.Professionallovingcareforpeoplewithamildintellectualdisability:an explorativestudy,J.Intellect.Disabil.Res.58(2014)221–232.

[35]A.E.Harchik,J.A.Sherman,J.B.Sheldon,Theuseofself-managmentprocedures bypeoplewithdevelopmentaldisabilities:abriefreview,Res.Dev.Disabil.13 (1992)211–227.

[36]B.J.Faloon,R.A.Rehfeldt,Theroleofovertandcovertself-rulesinestablishing adailylivingskillinadultswithmilddevelopmentaldisabilities,J.Appl.Behav. Anal.41(2008)393–404.

[37]M.A.Mastropieri,T.E.Scruggs,R.L.Shiah,Cancomputersteach problem-solvingstrategiestostudentswithmildmentalretardation?Acasestudy, RemedialSpec.Educ.18(1997)157–165.

[38]R.L.Schalock,Theconceptofqualityoflife:whatweknowanddonotknow,J. Intellect.Disabil.Res.48(2004)203–216.

[39]E. Dukes, B.E. McGuire, Enhancing capacity to make sexuality-related decisionsinpeoplewithanintellectualdisability,J.Intellect.Disabil.Res. 53(2009)727–734.

[40]G.D.Faw,P.K.Davis,C.Peck,Increasingself-determination:teachingpeople withmentalretardationtoevaluateresidentialoptions,J.Appl.Behav.Anal.29 (1996)173–188.

[41]M.A.Feldman,F.Owen,A.Andrews,J.Hamelin,R.Barber,D.Grifﬁths,Health self advocacytrainingforpersonswithintellectualdisabilities,J.Intellect. Disabil.Res.56(2012)1110–1121.

[42]M.Willems,A.Waninge,T.I.M.Hilgenkamp,P.vanEmpelen,W.P.Krijnen,C.P. vanderSchans,C.A.Melville,Effectsoflifestylechangeinterventionsfor peoplewithintellectualdisabilities:systematicreviewandmeta-analysisof randomizedcontrolledtrials,J.Appl.Res.Intellect.Disabil.31(2018)949–961. [43]A.Vázquez,C.Jenaro,N.Flores,M.J.Bagnato,M.C.Pérez,M.Cruz,E-health interventionsforadultandagingpopulationwithintellectualdisability:a review,Front.Psychol.9(2018).

[44]N.Frielink,C.E.M.Oudshoorn,P.J.C.M.Embregts,e-healthinsupportfordaily functioningofpeoplewithintellectualdisability:viewsofserviceusers, relatives,andprofessionalsonbothitsadvantages,disadvantagesandits facilitatingandimpedingfactors,Intellect.Dev.Disabil.(2020).

[45]B.Wennberg,A.Kjellberg,Participationwhenusingcognitiveassistivedevices -fromtheperspectiveofpeoplewithintellectualdisabilities,Occup.Ther.Int. 17(2010)168–176.

[46]K.A.Crnic,H.A.Pym,Trainingmentallyretardedadultsinindependentliving skills,Ment.Retard.17(1979)13–16.

(14)

[48]D.K.Davies,S.E.Stock,S.Holloway,M.L.Wehmeyer,Evaluatinga GPS-basedtransportationdevicetosupportindependentbustravelby peoplewithintellectualdisability,Intellect.Dev.Disabil.48(2010)454– 463.

[49]M.A. Feldman, J.M. Ducharme, L. Case, Using self-instructional pictorial manualstoteachchild-careskillstomotherswithintellectualdisabilities, Behav.Modif.23(1999)480–497.

[50]C.B.Gilson,E.W.Carter,Promotingsocialinteractionsandjobindependence forcollegestudentswithautismorintellectualdisability:apilotstudy,J. AutismDev.Disord.46(2016)3583–3596.

[51]J.Goodson,J.Sigafoos,M.O’Reilly,H.Cannella,G.E.Lancioni,Evaluationofa video-basederrorcorrectionprocedureforteachingadomesticskillto individualswithdevelopmentaldisabilities,Res.Dev.Disabil.28(2007)458– 467.

[52]M. Hällgren,A. Kottorp, Effects ofoccupational therapy intervention on activitiesofdailylivingandawarenessofdisabilityinpersonswithintellectual disabilities,Aust.Occup.Ther.J.52(2005)350–359.

[53]B.F.Johnson,A.J.Cuvo,Teachingmentallyretardedadultstocook,Behav. Modif.5(1981)187–202.

[54]R.C.Katz,N.N.Singh,Comprehensiveﬁre-safetytrainingforadultmentally retardedpersons,J.Ment.Deﬁc.Res.30(1986)59–69.

[55]A.Kottorp,M.Hallgren,B.Bernspang,A.G.Fisher,Client-centredoccupational therapyforpersonswithmentalretardation:implementationofan interventionprogrammeinactivitiesofdailylivingtasks,Scand.J.Occup.Ther. 10(2003)51–60.

[56]J.LaCampagne,E.Cipani,Trainingadultswithmentalretardationtopaybills, Ment.Retard.25(1987)293–303.

[57]D.L.Lovett,K.A.Haring,Theeffectsofself-managementtrainingonthedaily livingofadultswithmentalretardation,Educ.Train.Dev.Disabil.24(1989) 306–323.

[58]A.G.Marchetti,J.R.McCartney,S.Drain,M.Hooper,J.Dix,Pedestrianskills trainingformentallyretardedadults:comparisonoftrainingintwosettings, Ment.Retard.21(1983)107–110.

[59]J.E.Martin,F.R.Rusch,Useofthepartial-sequentialwithdrawaldesignto assessmaintenanceofmentallyretardedadults’acquiredmealpreparation skills,Res.Dev.Disabil.8(1987)389–399.

[60]J.L.Matson,Useofindependencetrainingtoteachshoppingskillstomildly mentallyretardedadults,Am.J.Ment.Deﬁc.86(1981)178–183.

[61]J.L.Matson,Independencetrainingvsmodelingproceduresforteachingphone conversationskillstothementallyretarded,Behav.Res.Ther.20(1982) 505–511.

[62]J.L. Matson, S. Long, Teaching computation/shopping skills to mentally retardedadults,Am.J.Ment.Deﬁc.91(1986)98–101.

[63]C.A.McInerney,M.McInerney,Amobilityskillstrainingprogramforadults withdevelopmentaldisabilities,Am.J.Occup.Ther.46(1992)233–239. [64]A.M. Michie, W.R. Lindsay, A.H. Smith, J. Todman, Changes following

communitylivingskillstraining:acontrolledstudy,Br.J.Clin.Psychol.37 (Pt1)(1998)109–111.

[65]N.A.Neef,J.Lensbower,I.Hockersmith,V.DePalma,K.Gray,Invivoversus simulationtraining:aninteractionalanalysisofrangeandtypeoftraining exemplars,J.Appl.Behav.Anal.23(1990)447–458.

[66]L.Ores,L.H.Parent,TelephoneCallAidforproblemsofvisualsequencing,Am.J. Occup.Ther.38(1984)40–43.

[67]R.A.Rehfeldt,D.Dahman,A.Young,H.Cherry,P.Davis,Teachingasimplemeal preparationskilltoadultswithmoderateandseverementalretardationusing videomodeling,Behav.Interv.18(2003)209–218.

[68]G.S.Richman,M.L.Reiss,K.E.Bauman,J.S.Bailey,Teachingmenstrualcareto mentallyretardedwomen:acquisition,generalization,andmaintenance,J. Appl.Behav.Anal.17(1984)441–451.

[69]R.Risley,A.J.Cuvo,Trainingmentallyretardedadultstomakeemergency telephonecalls,Behav.Modif.4(1980)513–525.

[70]R.E.Sarber,M.M.Halasz,M.C.Messmer,A.D.Bickett,J.R.Lutzker,Teaching menuplanningandgroceryshoppingskillstoamentallyretardedmother, Ment.Retard.21(1983)101–106.

[71]T.Taber-Doughty,J.Shurr,J.Brewer,S.Kubik,Standardcareandtelecare services:comparingtheeffectivenessoftwoservicesystemswithconsumers withintellectualdisabilities,J.Intellect.Disabil.Res.54(2010)843–859. [72]S.F.Tam,D.W.-K.Man,Y.P.Chan,P.C.Sze,C.M.Wong,Evaluationofa

computer-assisted,2-Dvirtualrealitysystemfortrainingpeoplewithintellectual disabilitiesonhowtoshop,Rehabil.Psychol.50(2005)285–291.

[73]I.Taylor,M.F.O’Reilly,Towardafunctionalanalysisofprivateverbal self-regulation,J.Appl.Behav.Anal.30(1997)43–58.

[74]I. Taylor,M.F. O’Reilly,Generalization ofsupermarketshopping skills for individualswithmildintellectualdisabilitiesusingstimulusequivalence training,Psychol.Rec.50(2000)49–62.

[75]D.P.Wacker,W.K.Berg,M.B.Visser,J.E.Egan,Apreliminaryevaluationof independenceinacompetitiveemploymentsetting,J.Assoc.Pers.Sev. Handicaps11(1986)246–254.