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In partnership withProject delivered by
Research Priorities for Learning Difficulties
Final Report
2
Contents
Page Item
3. Acknowledgements
4. Top10prioritiesforlearningdifficultiesresearch
5. Whysetprioritiesforlearningdifficultiesresearch?
6. Whatdowemeanbylearningdifficulties?
7. Identifying the priorities
- Getting started
-Thefirstsurvey
-Processingthesurveyresults
-Thesecondsurvey
- The priority setting workshop
14. Next steps
15. Appendix
3
Acknowledgements
Thankyoutoeveryonewhotookpartinthisprojectbycompletingthesurveysortakingpartinourworkshop.Thisincludesthechildren,youngpeopleandadultswithlearningdifficulties,theprofessionalswhoworkalongsidethem,and the parents and carers.
Thankyoualsototheindividualsandorganisationswhohelpedpromotetheproject,oursteeringgroupmembersandtheJamesLindAlliance.
Steering group members
• Project management team:Anne O’Hare,DirectoroftheSMCResearchCentreforLearningDifficulties(SMCRC)–UniversityofEdinburgh Christine Carlin,ChiefExecutiveofTheSalvesenMindroomCentre Katherine Cowan,SeniorAdviser,JamesLindAlliance Sinéad Rhodes,DeputyDirectoroftheSMCRC–UniversityofEdinburgh Ai Keow Lim,ResearchFellow,UniversityofEdinburgh Alison Irving,EngagementandCommunicationsOfficer, UniversityofEdinburgh
• Parent representatives:Gael Gordon,Glasgow Craig McDonald,Edinburgh Margaret McPheely,Edinburgh Justin Williams,Aberdeen
• Healthcare representatives:Mandy Adamson,SeniorOccupationalTherapist,NHSLothian Sarah Clegg,ConsultantCommunityChildHealthPaediatrician,NHSLothian Gill Earl & Leila Mackie(roleshare),SeniorSpeech&LanguageTherapists,NHSLothianJay Shetty,ConsultantPaediatricNeurologist,NHSLothianEreni Skouta,ConsultantAdolescentPsychiatrist,NHSLothian
• Educationalrepresentatives:Martin Gemmell,PrincipalEducationalPsychologist, CityofEdinburghCouncilRosy Hume,HeadTeacher,RowanfieldPrimarySchool
• Charityrepresentative:Cathy Magee,ChiefExecutive,DyslexiaScotland
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Top 10 priorities for learning difficulties research
1. Whatknowledge,skillsandtrainingdoeducationalprofessionalsneedtoidentifytheearlysignsoflearningdifficultiesandprovideoptimalsupportforchildrenandyoungpeopleaffectedtohelpthemachievethebestpossibleoutcomes?
2. Whatisthebesteducationalandcommunityenvironmentforchildrenandyoungpeoplewithlearningdifficulties?
3. Howcanmultipletypesofprofessionalsworktogetherwithparentsandcarerstoimproveidentification,diagnosis,interventionsandtreatmentsandachievethebestoutcomesforchildrenandyoungpeoplewith learningdifficulties?
4. Whichearlyinterventionsareeffectiveforchildrenandyoungpeoplewithlearningdifficulties,atwhatagesandstagesaretheybestintroducedandwhatarethelong-termoutcomes?
5. Whatknowledge,skillsandtrainingdohealth,socialworkand‘thirdsector’(e.g.charitiesandsupportservices)professionalsneedtounderstandthebestsupporttogivechildrenandyoungpeoplewithlearningdifficultiesandtheirfamilies/carers?
6. Howcanparents,carers,brothersandsistersandextendedfamiliesofchildrenandyoungpeoplewithlearningdifficulties,bebestsupportedtoachievetheirbestqualityoflifebefore,duringandafterthediagnosisoridentificationinhome,schoolandcommunitycontexts?
7. Howcanwebestidentifyearlyfeatures,symptomsandsignsoflearningdifficultiesamongstchildren,youngpeopleandtheirfamilies/carers?
8. Whatisthebestwaytoassesslearningdifficultiesinchildrenand youngpeople?
9. Whichstrategiesareeffectiveinpreventingstigmaandbullyingtowardschildrenandyoungpeoplewithlearningdifficulties?
10.Whichstrategiesareeffectiveinhelpingchildrenandyoungpeople withlearningdifficultiesliveindependentlives,includingduringtimes oftransitions?
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“It is so good that young people have had as much of a voice in setting the top 10 as parents and professionals”
Youngpersonwithlearningdifficulties
Why set priorities for learning difficulties research?
Itisestimatedthatasmanyas1in5childrenandyoungpeopleinScotlandliveswithalearningdifficulty–amassivesectionofoursociety.*
Individualsaffectedbylearningdifficulties,theirfamilies,andprofessionalsinhealthandeducationreportthatchildrenandyoungpeopleareoftennotgiventhesupporttheyneedwiththeirlearningdifficulties.Thiscanmeanthatpeoplemaynotreachtheirfullpotentialinlife,tothedetrimentofthemselves,theirfamily members and society.
Therearemanyunansweredquestionsaboutlearningdifficultiesandwhattheymeanforchildrenandyoungpeopleandtheirfamilies.Itiswidelyagreedthatmoreneedstobedonetoreducethebarrierscausedbylearningdifficulties.However,atthestartofthisprojectitwaslesscertainwhatshouldbedonefirstinordertomakethemostdifference,andwhatareasmatteredmosttothosepersonally and professionally affected.
Thisresearchprioritysettingprojectwasdesignedtoaddressthisissuebyidentifyingtheunansweredquestionsaboutlearningdifficultiesfromthechildrenandyoungpeopleaffectedandfromtheirfamilies.Questionswerealsocollectedfromhealthcare,education,socialworkandthirdsectorprofessionalswhoworkwithchildren,youngpeopleandtheirfamilies.
Theprojectprioritisedthequestionsthatsurveyrespondentsandrepresentativeyoungpeople,familiesandprofessionals,agreedtobethemostimportant.Theresultisalistofthetop10researchprioritiesforlearningdifficulties.
5
*BasedonScottishGovernmentfiguresforchildrenwithadditionalsupportneeds.
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What do we mean by learning difficulties?
Therearemanyinconsistenciesinthedefinitionsoflearningdifficulties,andsoforthisprojectwedefinedalearningdifficultyas‘aproblemofunderstandingoranemotionaldifficultythataffectsaperson’sabilitytolearn,getalongwithothersandfollowconvention’.
Onaday-to-daybasis,thatcanbemanythingsincluding:
•strugglingwithreading,writingornumeracy• not being able to concentrate for long periods • losing track of time •forgettingwhathasjustbeenlearnt•actingimpulsively
Ifdiagnosed,alearningdifficultymaybeassociatedwithmanyneurodevelopmentalconditionssuchas:
• attentiondeficit • dysgraphia hyperactivity disorder • dyslexia (ADHD) • epilepsy• autismspectrum • foetalalcoholspectrum disorder(ASD) disorder• developmental • fragile X syndrome coordinationdisorder • speechandlanguage (DCD/dyspraxia) impairments• Down’ssyndrome • intellecturaldisability• dyscalculia • Tourettesyndrome
Manychildrendonothaveaformaldiagnosisbutareidentifiedwhenatschoolashaving,inScotland,additionalsupportneeds(ASN)or,inotherpartsoftheUK,specialeducationalneeds(SEN).
Learningdifficultiescanalsobeasymptomofacomplexconditionsuchasachromosomaldisorder.Or,theycanresultfromillnessorinjurytothebrain(oftenreferredtoas‘acquireddisorders’).
Additionally,childrenandyoungpeoplecanbelongtogroupsathighriskofhavingalearningdifficulty,particularlythoseaffectingspeechandlanguagedevelopment.Forexample,childrenbornpreterm(before37weeks),thoseexposed to maltreatment and those with preschool developmental concerns may be at higher risk.
Manylearningdifficultiesarealsotheresultofmorethanoneconditionanditismoreoftenthecasethannot,thatchildrenwillhavecoexistingconditions.Forexample,ADHDplusASD,orDCDplusdyslexiamaycommonlybeseentogether.Learningdifficultiesarealsofrequentlylinkedwithmentalhealthissuesorpsychiatricdisorders.
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Identifying the priorities
Getting started TheJamesLindAllianceisanon-profitmakinginitiativeestablishedin2004.Itbringspatients,carersandclinicianstogetherinPrioritySettingPartnerships(PSPs)toidentifyandprioritisetheTop10uncertainties,orunansweredquestions,aboutmedicalconditionsortreatments.
Theaimofthesepartnershipsistomakesurethathealthresearchfundersareawareoftheissuesthatmattermosttopatients(orpeoplelivingwithacondition),theirfamiliesandhealthcareprofessionals.
Ourproject,however,broughtinnovationtothisformatbyinvolvingprofessionalsfromtheeducationsectorinadditiontothosefromthehealthsector.Thisrecognisedthatourtop10neededadvicefromeveryonewhoisinvolvedinmakingadifferencetothedevelopment,healthandwellbeingofchildrenandyoungpeoplewithlearningdifficulties.
Ourproject’sfirsttaskwastoinvitekeyindividuals,representingparents,education,healthcareandcharities,toformasteeringgrouptooverseetheproject.
Wewereparticularlykeenthatthevoicesofyoungpeoplewithlearningdifficultieswereheardduringtheprojectandthattheirviewswerereflectedintheresults.Toachievethiswetookstepsateverystagetoremovebarrierstotheirinvolvementandactivelyencouragetheirparticipation.Theseactivitiesarediscussedinthefollowingsectionsbutincludeversionsofliteratureforchildrenandyoungpeople,afocusgroupandstrongrepresentationatthepriority setting workshop.
The first surveyThefirstmajorstepoftheprojectwastogathertheunansweredresearchquestionsaboutlearningdifficultiesfrompeopleacrossScotland.Thiswasdonethroughasurveythatwasmadeavailablebothonlineandinpaperversions,betweenmid-May2017andtheendofJuly2017(withashortextensionforunderrepresentedgroupsuntiltheendofSeptember2017).
We asked for responses from:
•childrenandyoungpeoplewithlearningdifficulties•adultswhohadexperiencedlearningdifficultiesasachild•parentsandcarersofachildoryoungpersonwithlearningdifficulties•professionalsworkingwithachildoryoungpersonwithlearningdifficultiese.g.thoseworkinginhealth,education,socialworkorthethirdsector
Aspecificsurveyandotherpromotionalmaterialswereproducedforchildrenandyoungpeopleusingsimplifiedlanguageandlayouttoencouragetheirparticipation.AllprojectmaterialscanbeviewedontheJamesLindAlliancewebsite.Seepage15ofthisreportfordetails.
ThesurveywaspromotedacrossScotlandbysteeringgroupmembers,organisations working alongside children and families affected by learning difficultiesandorganisationsrepresentinghealth,educationandprofessionalsworkingwithchildrenandyoungpeople.TheseincludedorganisationssuchasTheRoyalCollegeofPaediatricsandChildHealth,theChildrenandYoungPeople’sCommissionerScotlandandtheNationalParentForumofScotland.
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Tell us what matters to y u
Research priorities for learning
difficultiesAt least 5 children
in every Scottish classroom
have a learning difficulty
Survey closes 31 July 2017
Complete the survey
online or by post
www.SalvesenMindroom.org
Tel: 0131 536 8898
Email: [email protected]
In partnership with
Affected
by learning
difficulties?
Help us set
the research
priorities
that matter
Complete the survey
The Salvesen Mindroom
Centre (formerly Mindroom)
Scottish Charity No. SC030472The University of Edinburgh
Scottish Charity No. SC005336
Project delivered by
1
Research Priorities for Learning Difficulties
in Children and Young People
SurveyTell us what matters to you about research into learning difficulties
Who can take part?
We would like you to complete this survey if you
are: a child or young person who has learning
difficulties an adult who has experienced learning
difficulties as a child a parent/carer of a child or young person with
learning difficulties a professional working with a child or young
person with learning difficulties
e.g. those working in health, education, social
work or the third sector.
Additional Information
Go to www.SalvesenMindroom.org for an online
version of the survey, more information,
including Q&As and a child-friendly version of
this formor call: Ai Lim on 0131 536 8898
or email: [email protected]
Learning diffi culties defi nition
For this survey, learning diffi culties means a problem of understanding or an emotional
diffi culty that affects a person’s ability to learn, get along with others and follow
convention. On a day-to-day basis, this may be many things – struggling with reading,
writing or numeracy, not being able to concentrate for long periods, losing track of
time, forgetting what has just been learned or acting impulsively.
If diagnosed, a learning diffi culty may be associated with many conditions such as
dyslexia, autism spectrum disorder (ASD) etc.
Survey closes: 31 July 2017
Tell uswhat
matters to y u
In partnership with
Project delivered by
The Salvesen Mindroom
Centre (formerly Mindroom)
Scottish Charity No. SC030472 The University of Edinburgh
Scottish Charity No. SC005336
SCT0317303668-1_Questionnaire Artwork_8pp_P8.indd 1
10/05/2017 10:04
Research priorities
for learning
difficulties
At least 5 children
in every Scottish
classroom have a
learning difficulty
The Salvesen Mindroom
Centre (formerly Mindroom)
Scottish Charity No. SC030472The University of Edinburgh
Scottish Charity No. SC005336
Complete
the survey Affected
by learning
difficulties?
Help us set
the research
priorities
that matter.
What would you like
researchers to find out?
You can make
a difference.
Complete the survey
online or by post.
Survey closes 31 July 2017
Complete the survey
In partnership with
Project delivered by
Online at
www.SalvesenMindroom.org
By post
Call: 0131 536 8898 or
Email: [email protected]
Contact us
For more information
Visit: www.SalvesenMindroom.org
Call: Ai Lim on 0131 536 8898
Email: [email protected]
@LD_Research
Tell us what matters to y u
1
Research Priorities for Learning Difficulties
in Children and Young People
Children & Young People’s Survey
Tell us what matters to you about research into learning difficulties
Who can take part?
Children and young people with learning
difficulties
Additional Information
Go to www.SalvesenMindroom.org for:
an online version of the survey
more information, including Q&As
a version of this form for adults with
learning difficulties, parents & carers and
professionals working in health, education,
support etc.
or call: Ai Lim on 0131 536 8898 or email:
Learning diffi culties defi nition
For this survey, learning diffi culties means a problem of
understanding or an emotional diffi culty that affects a
person’s ability to learn, get along with others and follow
convention. On a day-to-day basis, this may be many things
– struggling with reading, writing or numeracy, not being
able to concentrate for long periods, losing track of time,
forgetting what has just been learned or acting impulsively.
If diagnosed, a learning diffi culty may be associated with many conditions such as
dyslexia, autism spectrum disorder (ASD) etc.
Survey closes: 31 July 2017
In partnership withProject delivered by
The Salvesen Mindroom
Centre (formerly Mindroom)
Scottish Charity No. SC030472The University of Edinburgh
Scottish Charity No. SC005336
SCT0317303668-1_Questionnaire Artwork_4pp_P8.indd 1
10/05/2017 09:51
9
367individualsrespondedtothesurvey,submitting828questions. The mix of respondents was:
• 52% professionals• 40% parents and carers •8%children,youngpeopleoradults whoexperiencedlearningdifficulties as a child.
TherespondentsreflectedtheScottishpopulationin terms of ethnicity and there was a good geographicalspreadwith28outof32localauthoritiesrepresented. A wide range of responses came from acrossthespectrumoftheScottishIndexofMultipleDeprivationandtheresponsesalsorepresentedfamiliesaffectedbymanydifferentlearningdifficulties.
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52%
8%
40%
10
Processing the survey resultsInanysurveytherewillbequestionssubmittedthatgooutsidetheareaofthestudy.Forthissurveythefocuswasonchildrenandyoungpeopleuptoage25years.Ofthe828questionssubmitted,63ofthequestionsaskedwerenotrelevanttothisprojectandwereclassifiedasbeing‘outofscope’.Theseincludedquestionsthatreferredtoadultsageingwithlearningdifficultiesorquestionsaroundalocalauthority’seconomicpolicyanddecisionsaroundsupportservices.
Oftheremaining765questions,somewereaskedlotsoftimesbymanypeople,oftenjustinslightlydifferentways.Theprojectteamgroupedtogetherthesesimilarquestionsandanoverarchingquestionwaswrittenforeachgroup.Somequestionswereonlyaskedonceandthesewerekeptintheiroriginalform.Attheendofthisprocesswehadasinglelistof40questions.
Thenexttaskwastocheckthislistof40questionsagainstexistingresearchresultsfromacrosstheworldfromthelastthreeyears,toseeifanyofthemhadalreadybeenanswered.Itwasfoundthatnoneofthequestionshadbeencomprehensivelyansweredalreadybyresearch.Somehadbeenansweredforaspecificconditionbutnotfortheotherconditionswithintheprojectdefinitionoflearningdifficulties.Forexample,aresearchpapercouldbefoundondyslexiabutnotforADHDorautism,fragileXsyndrome,cerebralpalsy,foetalalcoholspectrumdisorder,epilepsy,etc.
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The second surveyAfterthereviewofexistingresearchwascompleted,all40questionswereleftonour‘longlist’.Withthislistwecreatedashortlistingsurveywhichaskedpeopletochoosetheirtop10questionsfromthefinal40.
We asked for responses from the same categories of people that we had approachedduringthefirstsurveyi.e.childrenandyoungpeoplewithlearningdifficulties,adultsaffectedaschildrenandparents,carersandtheprofessionalsworkingalongsidethem.Thesecondsurveywasalsosentouttoindividualswhorespondedtothefirstsurveyandhadaskedustostayintouch.Itwasalsopromotedthroughthesamenetworksofprofessionalorganisationsandsteeringgroupcontactsasbefore.
Bytheclosingdate,361peoplehadcompleted thesurveyandthemixofrespondentswas:
• 54% professionals• 34.6% parents and carers •11.4%children,youngpeopleoradults whoexperiencedlearningdifficulties as a child.
Thesurveyrespondentswerethensplitintotwocategories:one,professionalsandtwo,family group.Thefamilygroupwasmadeupofchildrenandyoungpeople,parentsandcarersandadultswhoexperiencedlearningdifficultiesasachild.
Inprocessingtheresults,eachtimeaquestionwasselectedbyasurveyparticipant,itwasgivenapoint.Thepointswerethentotaledupforeachquestion.Separatetotalswerekeptofthe‘professionals’responsesandof‘familygroup’responses.
Thenextstepwastorankthequestionsfromthehighest(mostpopular)tothelowest(leastpopular).Separatingtheseresultsforthetwocategoriesofrespondentsallowedthesteeringgrouptoseewhichquestionsscoredhighlyforprofessionalsandwhichforthefamilygroup.Thesteeringgroupreviewedtheresultsanddeterminedthatalistof25questionswouldgotothefinalworkshop.These25questionsincludedthetoptenprioritiesoftheprofessionalsgroupandthefamilygroup.
54%
11.4%
34.6%
“ Great to have such a mixed group of people participating .. [The workshop] also challenged some perceptions I had over what questions others would prioritise”
ConsultantPaediatricianinCommunityChildHealth
The priority setting workshopInJune2018,theworkshoptodecidethefinaltop10researchprioritieswasheldinEdinburgh.Youngpeoplewithlearningdifficulties,parentsandcarerstookpartalongwithprofessionalsfromhealth,education,andthirdsectors.The25participantswererecruitedviathesteeringgrouporviatheshortlistingsurveywhererespondentshadindicatedaninterestintakingpartin the workshop.
Theparticipantsweresentthefinal25questionsafewdaysbeforetheycametotheworkshopandaskedtothinkabouthowtheywouldranktheminorderofimportance.Duringtheworkshop,thegroupcametoagreethattwoquestionsabouttransitionsshouldbecollapsedintoonequestion,leaving24prioritisedshortlistedquestions.
The workshop involved each participant taking part in two different small groupdiscussionswheretheylistenedtootherpeople’sviewsonwhichquestionsweremostandleastimportantandwheretheycouldalsoexpresstheirownopinions.Eachsmalldiscussiongroupthenrankedthequestions.Followingthistheworkshopparticipantsalljoinedtogetherasawholetosharetheirthinking.Thisprocesshelpedthefullgroupreachagreementonwhichquestionsshouldbeapriorityaspeoplebalancedtheirownviewsandexperiences with those of other people. The facilitators were on hand to make sureeveryonehadachancetoparticipate.
Youngpeopleaccountedforoneinfiveoftheparticipantsattheworkshop.Evenwhenfacedwithchallengesinspokenandwrittenlanguage,theyactivelycontributedtheirviews,makingthisworkshoponeofthemostinclusiveofyoungpeopletodate,amongstallthoseconductedbytheJamesLindAlliance.
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Thefinaltop10prioritiesarelistedonpagefourofthisreport.The14remainingquestions,whichdidnotmakethetop10,arelistedbelowinorder of importance as agreed at the priority setting workshop.
11. Whatarethefactorscontributingtothedelayforchildrenandyoungpeoplewithlearningdifficultiesinreferralfor,anddifferencesin,alearningdifficultiesassessmentanddiagnosis,supportandinterventions?
12. Howdoesalearningdifficultyaffectorinterferewithachildoryoungperson’sabilityandexperienceinlearning?
13. Whichfamily,schoolandcommunitysupportsareeffectiveinpreparingchildren,youngpeopleandtheirfamilies/carerstotransitionthroughdifferentstagesofschooling/educationandthroughchildrenandyoungpeople’sservicesintoadultservices?
14. Whyarechildrenandyoungpeoplewithlearningdifficultiesmorelikelytoexperiencementalhealthproblems?
15. What effect does having a formal label or a diagnosis have on children andyoungpeoplelivingwithalearningdifficultyandthoseinvolvedintheircareandthepublic?
16. Whichinformationandcommunicationtechnologies(ICT)(e.g.augmentativeandalternativecommunication(AAC)devices,ICT-basedcommunicationaids,assistivetechnology,iPads/writingaids/tablet/phone)areeffectiveandhowcantheybestbeaccessedbychildrenandyoungpeoplewithlearningdifficulties?
17. Howcanweimprovepublicawarenessaboutlearningdifficultiesandwhat is the impact of any improvement in awareness on the wellbeing of peoplewithlearningdifficulties?
18. Whatarethebestmeasuresofoutcomes(e.g.academicskills,peerrelationships,qualityoflife,classroomparticipation)forchildrenandyoungpeoplewithlearningdifficulties?
19. Whichparentingapproachesandstrategiesaremosthelpfulforyoungparentsorcarerswhothemselveshavelearningdifficulties?
20. Whichstrategiesareeffectiveinincreasingthesupportavailableforchildrenandyoungpeoplewithlearningdifficulties,andtheirfamilies/carers,inout-of-schoolactivities?
21. Howcanweunderstandwhatitisliketolivewithlearningdifficultiesfromachildoryoungperson’sperspective?
22. Whatstrengthsdochildrenandyoungpeoplewithlearningdifficultieshave?23. Whatpercentageofchildrenandyoungpeoplewithlearningdifficulties
receivetheappropriatecareandsupportthatmeetstheirneedsathome,inclinic,ineducationandatwork?
24. Howdolearningdifficultiesaffecttheeverydaylifeofchildrenandyoungpeoplelivingwithalearningdifficultyandthoseinvolvedintheircare?
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Next steps
Theresearchprioritiesforlearningdifficultiesprojecthopesthatbyidentifyingthetop10priorityresearchquestions,researchwillnowfocusontheissuesthatmattermosttochildrenandyoungpeoplewithlearningdifficulties,theirparents and carers and the professionals who work alongside them.
•Weencourageresearchfunderstoincludetheseprioritiesintheirresearchstrategyandtotargetthesetopicsforfutureresearchfunding.
•Weencourageresearcherstofocustheireffortsonansweringthehighestpriorityquestionsandtomentionthisprojectintheirapplicationsforfunding.Ifaresearcherreceivesfundingtoaddressanyofthelistedpriorities,weaskthattheypleaseinformtheJamesLindAlliance.
•Weencouragefunders,researchersandallinterestedpartiestosharethisreport with others and to raise awareness of the need for more learning difficultiesresearchinScotland,theUKandinternationally.
•Weencouragehealthandeducationprofessionalstocontinuetoworktogetherandalongsideresearchersforthebenefitofallpeoplelivingwithlearningdifficulties.Thisisparticularlyimportantasthequestionsidentifiedbythisproject,andtheresultingresearch,aremorechallengingthanthatfor a single disease or health condition.
Ifyouhaveanyqueriesorcommentsaboutthisworkpleasecontact: TheSMCResearchCentreforLearningDifficulties ChildLife&Health TheUniversityofEdinburgh 20SylvanPlace Edinburgh EH91UWEmail:[email protected]
Furtherinformationabouttheprojectcanbefoundatwww.jla.nihr.ac.uk/priority-setting-partnerships/learning-difficulties-scotland/Ifyouwouldlikemoreinformationandadviceaboutlearningdifficulties, pleasecontactTheSalvesenMindroomCentreon01314752330oremaildirecthelp@mindroom.org
“It’s so unusual for service users to be ‘properly’ involved in research decisions and I think this is a very valuable way of doing things”
Third sector professional
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Appendix
15
Theremaining15questions,whichmadeupthefinal40questionssentoutaspartofthesecondsurvey,arelistedbelow.Onlyatotalof 39questionsremainasduringtheworkshopprocesstwoquestionswerecombinedintoone.(seepage12fordetails)
Thequestionsarerankedinorderofimportancefromtheresultsofthesecondsurveywithsomequestionsbeinggivenequalplacing. (e.g.26and30)*
25. Howcanwemakebestuseofresourcestosupportchildren,youngpeopleandtheirfamilieswhenalearningdifficultyhasbeenidentified?
26*. Howcanwemonitorandpredictoutcomesforthetransitionofachildandyoungpersonwithlearningdifficultiestoadultlife?
26*. Howcanwebestsupportchoiceanddecisionmakingforchildrenandyoungpeoplewithlearningdifficulties?
28. Howdolearningdifficultiesaffectsleepinchildrenandyoungpeopleandwhatarethebestwaysoftreatingthesesleepdifficulties?
29. Whatarethetriggers,mechanismsandrelationshipsofphysicalandmentalhealthconditionsthatoftenpresentalongsidelearningdifficultiesinchildrenandyoungpeople?
30*. Whatresourceshelpchildrenandyoungpeoplewithlearningdifficultiesunderstandtheircondition?
30*. Whatare,andhowcommonare,thephysicalandmentalhealthconditionsthatoftenpresentalongsidelearningdifficultiesinchildrenandyoungpeople?
32. Whataretheincidence,causes,interventionsandtherapiesforsensorydifficultiesanddotheseimpactonlearning?
33. Whatistheeffectoflivingwithachildoryoungpersonwithlearningdifficulties,onmembersoftheirfamilyorcarers?
34. Howcommonarelearningdifficultiesandthephysicalandmental healthconditionsthatoftenpresentalongsidelearningdifficultiesinchildrenandyoungpeople?Havetheyincreased?Ifso,whyhastherebeenanincrease?
35. Howcaninterventionsbeplannedforchildrenandyoungpeoplewithlearningdifficultiesandcomplexneeds?
36. Howdolearningdifficultiesaffectinteractionbetweenchildrenandyoungpeopleandtheirpeers,includingwithinonlinesocialnetworkssuchasFacebookandSnapchat?
37. Whatarethecausesoflearningdifficultiesamongstchildrenand youngpeople?
38. Whatarethechancesoflearningdifficultiesbeingpasseddownfromparenttochild?
39. Howcantoymanufacturersidentifytheneedsofchildrenwithlearningdifficultiesandproducetoysthatmeettheseneeds?
All materials related to this project can be viewed online at www.jla.nihr.ac.uk/priority-setting-partnerships/learning-difficulties-scotland
TheSMCResearchCentreforLearningDifficulties ChildLife&Health TheUniversityofEdinburgh 20SylvanPlace Edinburgh EH91UW
[email protected] 536 0802www.ed.ac.uk/clinical-brain-sciences
TheSalvesenMindroomCentre Norton Park 57AlbionRoad Edinburgh EH75QY
[email protected] 0131 475 2330www.mindroom.org
TheJamesLindAlliance NationalInstituteforHealthResearchEvaluation,TrialsandStudiesCoordinatingCentre UniversityofSouthampton AlphaHouse EnterpriseRoad Southampton SO167NS
[email protected] 023 8059 5489 www.jla.nihr.ac.uk
TheSalvesenMindroomCentre ScottishCharityNo.SC030472 TheUniversityofEdinburgh ScottishCharityNo.SC005336
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