{"status":"OK","data":{"id":238848,"identifier":"SS/SDBEKI","persistentUrl":"https://doi.org/10.17026/SS/SDBEKI","protocol":"doi","authority":"10.17026","separator":"/","publisher":"DANS Data Station Social Sciences and Humanities","publicationDate":"2024-08-29","storageIdentifier":"surf://10.17026/SS/SDBEKI","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9948,"datasetType":"dataset","locks":[],"latestVersion":{"id":35981,"datasetId":238848,"datasetPersistentId":"doi:10.17026/SS/SDBEKI","datasetType":"dataset","storageIdentifier":"surf://10.17026/SS/SDBEKI","versionNumber":2,"internalVersionNumber":5,"versionMinorNumber":1,"versionState":"RELEASED","latestVersionPublishingState":"RELEASED","distributionDate":"2024-07-03","productionDate":"2024-07-03","lastUpdateTime":"2026-08-28T14:24:00Z","releaseTime":"2026-08-28T14:24:00Z","createTime":"2026-08-28T14:23:56Z","publicationDate":"2024-08-29","citationDate":"2024-08-29","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9948,"license":{"name":"DANS Licence","uri":"https://doi.org/10.17026/fp39-0x58","iconUri":""},"dataAccessPlace":"Alle originele data zijn gearchiveerd bij de Universiteit voor Humanistiek","originalArchive":"Participative or Dignified Citizenship archive UvH","availabilityStatus":"De data kan worden gebruikt vanaf 1 juli 2025","sizeOfCollection":"13 transcripten van interviews met professionals van mensen met een emb\n11 transcripten van interviews met verwanten van mensen met een emb\n2 transcripten van focusgroepen\nAlle transcripten in pdf","studyCompletion":"Niet alle data van dit project zijn beschikbaar gesteld. De observatieverslagen van de schaduwdagen van 12 mensen met een emb zijn niet beschikbaar gesteld. Daarnaast zijn zes interviews met bestuurders/managers van de zes instellingsterreinen niet beschikbaar gesteld. Een belangrijke reden voor het niet beschikbaar stellen van de data is dat het moeilijk te anonimiseren data betreft. ","fileAccessRequest":true,"metadataBlocks":{"citation":{"displayName":"Citation Metadata","name":"citation","fields":[{"typeName":"title","multiple":false,"typeClass":"primitive","value":"Participative or Dignified Citizenship"},{"typeName":"subtitle","multiple":false,"typeClass":"primitive","value":"An empirical ethical study of social inclusion for people with profound and multiple disabilities living in sheltered living institutions"},{"typeName":"alternativeTitle","multiple":true,"typeClass":"primitive","value":["Participative or Dignified Citizenschip"]},{"typeName":"author","multiple":true,"typeClass":"compound","value":[{"authorName":{"typeName":"authorName","multiple":false,"typeClass":"primitive","value":"F. Bredewold"},"authorAffiliation":{"typeName":"authorAffiliation","multiple":false,"typeClass":"primitive","value":"https://ror.org/04w5ec154","expandedvalue":{"scheme":"http://www.grid.ac/ontology/","termName":"University of Humanistic Studies","@type":"https://schema.org/Organization"}},"authorIdentifierScheme":{"typeName":"authorIdentifierScheme","multiple":false,"typeClass":"controlledVocabulary","value":"ORCID"},"authorIdentifier":{"typeName":"authorIdentifier","multiple":false,"typeClass":"primitive","value":"0000-0002-6231-8263"}},{"authorName":{"typeName":"authorName","multiple":false,"typeClass":"primitive","value":"S. van der Weele"},"authorAffiliation":{"typeName":"authorAffiliation","multiple":false,"typeClass":"primitive","value":"https://ror.org/04w5ec154","expandedvalue":{"scheme":"http://www.grid.ac/ontology/","termName":"University of Humanistic Studies","@type":"https://schema.org/Organization"}},"authorIdentifierScheme":{"typeName":"authorIdentifierScheme","multiple":false,"typeClass":"controlledVocabulary","value":"ORCID"},"authorIdentifier":{"typeName":"authorIdentifier","multiple":false,"typeClass":"primitive","value":"0000-0001-9931-2394"}}]},{"typeName":"datasetContact","multiple":true,"typeClass":"compound","value":[{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"Bredewold, Femmianne"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"University of Humanistic Studies"}}]},{"typeName":"dsDescription","multiple":true,"typeClass":"compound","value":[{"dsDescriptionValue":{"typeName":"dsDescriptionValue","multiple":false,"typeClass":"primitive","value":"<p>In het project Participative of Dignified Citizenship onderzochten de Universiteit voor Humanistiek, VGN, Platform EMG, Kansplus en Sien hoe sociale inclusie vorm en betekenis gegeven kan worden voor de groep mensen met een ernstige verstandelijke en meervoudige beperking (emb) die leeft op een instellingsterrein.</p>\n\n<p>Het onderzoek richtte zich op de spanning tussen enerzijds 'gelijkheidsdenken', dat staat voor het op voet van gelijkheid deelnemen aan de samenleving en anderzijds 'verschildenken', dat ruimte maakt voor de eigenheid van mensen met een beperking.</p>\n\n<p>Doelstellingen<br>\n1.\tBijdragen aan de vertaling van het VN-verdrag voor mensen met emb die leven op een instellingsterrein;<br>\n2.\tKennis opleveren over hoe je het perspectief van mensen met emb (en hun verwanten) recht kunt doen.</p>\n\n<p>Uit dit project zijn de volgende data beschikbaar gesteld:<br>\n1. de interviews met professionals van mensen met een emb;<br>\n2. de interviews met verwanten van mensen met een emb;<br>\n3. de gehouden focusgroepen.</p>"}}]},{"typeName":"subject","multiple":true,"typeClass":"controlledVocabulary","value":["Social Sciences"]},{"typeName":"keyword","multiple":true,"typeClass":"compound","value":[{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"sociale inclusie"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"ernstige verstandelijke en meervoudige beperking"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"deinstitutionalisering"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"VN-verdrag"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"perspectief"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"voice"}}]},{"typeName":"notesText","multiple":false,"typeClass":"primitive","value":"De dataset bevat 13 interviews met professionals van mensen met een ernstige verstandelijke en meervoudige beperking. En 11 interviews met verwanten van mensen met een ernstige verstandelijke en meervoudige beperking. De interviews zijn erop gericht om zicht te krijgen op hoe je het perspectief van mensen met een emb kan achterhalen en wat geinterviewden hiertoe inzetten. Daarnaast gaat het gesprek over hoe een goed leven kan gerealiseerd voor mensen met een emb en hoe dat goede leven zich verhoudt tot sociale inclusie. \n\nNaast de interviews zijn er transcripten van twee focusgroepen toegevoegd. In een van de focusgroepen reflecteren experts op het thema sociale inclusie op de uitkomsten van het onderzoek en denken we na over aanbevelingen. De andere focusgroep is speciaal gericht op het ontwikkelen van lesmateriaal over sociale inclusie en mensen met een emb, te gebruiken binnen opleidingen sociaal werk (mbo, hbo)."},{"typeName":"language","multiple":true,"typeClass":"controlledVocabulary","value":["Dutch"]},{"typeName":"producer","multiple":true,"typeClass":"compound","value":[{"producerName":{"typeName":"producerName","multiple":false,"typeClass":"primitive","value":"Femmianne Bredewold"},"producerAffiliation":{"typeName":"producerAffiliation","multiple":false,"typeClass":"primitive","value":"University of Humanistic Studies"}}]},{"typeName":"productionDate","multiple":false,"typeClass":"primitive","value":"2024-07-03"},{"typeName":"productionPlace","multiple":true,"typeClass":"primitive","value":["Utrecht, The Netherlands"]},{"typeName":"contributor","multiple":true,"typeClass":"compound","value":[{"contributorType":{"typeName":"contributorType","multiple":false,"typeClass":"controlledVocabulary","value":"Data Collector"},"contributorName":{"typeName":"contributorName","multiple":false,"typeClass":"primitive","value":"Femmianne Bredewold"}}]},{"typeName":"grantNumber","multiple":true,"typeClass":"compound","value":[{"grantNumberAgency":{"typeName":"grantNumberAgency","multiple":false,"typeClass":"primitive","value":"ZonMW"},"grantNumberValue":{"typeName":"grantNumberValue","multiple":false,"typeClass":"primitive","value":"854011001"}}]},{"typeName":"distributor","multiple":true,"typeClass":"compound","value":[{"distributorName":{"typeName":"distributorName","multiple":false,"typeClass":"primitive","value":"Femmianne Bredewold"},"distributorAffiliation":{"typeName":"distributorAffiliation","multiple":false,"typeClass":"primitive","value":"University of Humanistic Studies"},"distributorLogoURL":{"typeName":"distributorLogoURL","multiple":false,"typeClass":"primitive","value":"https://nl.wikipedia.org/wiki/Bestand:Universiteit_voor_Humanistiek_logo.jpg"}}]},{"typeName":"distributionDate","multiple":false,"typeClass":"primitive","value":"2024-07-03"},{"typeName":"depositor","multiple":false,"typeClass":"primitive","value":"Bredewold, Femmianne"},{"typeName":"dateOfDeposit","multiple":false,"typeClass":"primitive","value":"2024-07-03"},{"typeName":"timePeriodCovered","multiple":true,"typeClass":"compound","value":[{"timePeriodCoveredStart":{"typeName":"timePeriodCoveredStart","multiple":false,"typeClass":"primitive","value":"2019-09-01"},"timePeriodCoveredEnd":{"typeName":"timePeriodCoveredEnd","multiple":false,"typeClass":"primitive","value":"2024-01-01"}}]},{"typeName":"dateOfCollection","multiple":true,"typeClass":"compound","value":[{"dateOfCollectionStart":{"typeName":"dateOfCollectionStart","multiple":false,"typeClass":"primitive","value":"2020-04-01"},"dateOfCollectionEnd":{"typeName":"dateOfCollectionEnd","multiple":false,"typeClass":"primitive","value":"2023-12-22"}}]},{"typeName":"kindOfData","multiple":true,"typeClass":"primitive","value":["machine-readable text"]},{"typeName":"software","multiple":true,"typeClass":"compound","value":[{"softwareName":{"typeName":"softwareName","multiple":false,"typeClass":"primitive","value":"word"}}]},{"typeName":"dataSources","multiple":true,"typeClass":"primitive","value":["Bredewold, F. & Van der Weele, S. (2024). Een Wereld van Verschil. Instellingsterreinen en het goede leven voor mensen met een verstandelijke beperking. Utrecht: SWP. \nhttps://www.swpbook.com/boeken/22/verstandelijke-beperking-gehandicaptenzorg/2599/een-wereld-van-verschil","van der Weele, S., Bredewold, F. (2024). What’s Good About Inclusion? An Ethical Analysis of the Ideal of Social Inclusion for People with Profound Intellectual and Multiple Disabilities. Health Care Anal 32, 106–123. \nhttps://doi.org/10.1007/s10728-023-00470-y","Van der Weele, S. & Bredewold, F. (2024). Maak sociale inclusie echt inclusief: pleidooi voor Verschildenken. Sociale Vraagstukken, mei 2024. \nhttps://www.socialevraagstukken.nl/maak-sociale-inclusie-echt-inclusief-pleidooi-voor-verschildenken/"]}]},"dansRights":{"displayName":"Rights Metadata","name":"dansRights","fields":[{"typeName":"dansRightsHolder","multiple":true,"typeClass":"primitive","value":["University of Humanistic Studies"]},{"typeName":"dansPersonalDataPresent","multiple":false,"typeClass":"controlledVocabulary","value":"No"},{"typeName":"dansMetadataLanguage","multiple":true,"typeClass":"controlledVocabulary","value":["Dutch"]}]},"dansRelationMetadata":{"displayName":"Relation 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ORAL"}]}]},{"typeName":"dansUniverse","multiple":true,"typeClass":"primitive","value":["relatives of Dutch people with profound intellectual and multiple disabilities","social professionals of Dutch people with profound intellectual and multiple disabilities"]},{"typeName":"dansSamplingProcedureFreeText","multiple":false,"typeClass":"primitive","value":"gerichte steekproeftrekking"},{"typeName":"dansDataCollectionSituation","multiple":false,"typeClass":"primitive","value":"De doelgroep: Mensen met een emb\n\nWe richtten ons in het onderzoek speciaal op de sociale inclusie en het perspectief van mensen met een ernstige verstandelijke en meervoudige beperking. We hebben mensen met een ernstige verstandelijke en meervoudige beperking geselecteerd op basis van de definitie van Nakken & Vlaskamp (2007, p. 85): 'individuen met een ernstige verstandelijke en meervoudige beperking hebben twee belangrijke kenmerken: (a) diepgaande verstandelijke beperkingen en (b) diepgaande motorische beperkingen. Ze hebben ook een aantal bijkomende ernstige of diepgaande secundaire handicaps of beperkingen' [vertaald vanuit het Engels].  \n\n\nHoewel deze definitie duidelijk lijkt, erkennen we net als veel andere wetenschappers (Maes et al., 2021; Mietola et al., 2017) dat deze definitie slechts een indicatie geeft van de complexiteit van mensen met een ernstige verstandelijke en meervoudige beperking; in feite vormen zij een heterogene groep die zich moeilijk laat definiëren. Daarom hebben we ook andere kenmerken van mensen met een ernstige verstandelijke en meervoudige beperking toegevoegd om de zes zorgorganisaties een beter begrip te geven van welke groep mensen we wilden volgen in ons onderzoek. Puttend uit de WHO-definitie van mensen met een ernstige verstandelijke en meervoudige beperking, gaven we aan te zoeken naar mensen met weinig of geen duidelijk begrip van verbale taal en weinig of geen vermogen om voor zichzelf te zorgen, die niet in staat waren om te lopen en meestal ook te maken hebben met bijkomende medische aandoeningen. \n\n\nWe kozen er heel bewust voor om ons op deze groep te richten. Niet alleen omdat een grote groep mensen met een ernstige verstandelijke en meervoudige beperking op het terrein woont – mensen met een lichtere verstandelijke beperking wonen vaker in de samenleving, precies omdat het heersende ideaal van ‘een goed leven als gewoon leven’ voor hen makkelijker te realiseren lijkt – maar ook omdat er weinig onderzoek plaatsvindt naar het ‘goede leven’ van mensen met een ernstige verstandelijke en meervoudige beperking, wat een bedreiging kan vormen voor hun toch al gemarginaliseerde positie (Mietola et al., 2017; Simplican et al., 2015).  \n\n\nInterviews\n\nIn het onderzoek interviewden we 13 professionals en 11 verwanten van de 12 personen met een emb die we in dit project schaduwden. We gebruikten deze interviews om een beter begrip te krijgen van wat we zagen en meemaakten tijdens het schaduwen, maar ook vroegen we wat zij belangrijk vinden voor een goed leven voor hun familielid of cliënt, en hoe ze dit in de dagelijkse praktijk proberen te realiseren.  \n\nIn het geval van de verwanten spraken we overwegend ouders, maar soms ook een broer of zus en in een enkel geval (als er geen familie meer ‘in beeld’ was) een mentor. In het geval van begeleiders probeerden we altijd een persoonlijk begeleider te spreken van de bewoner in kwestie. Sommige instellingen hanteerden echter geen onderscheid tussen persoonlijk begeleider en groepsbegeleider; in zulke gevallen spraken we een vaste groepsbegeleider. De zes instellingsterreinen selecteerden zelfs 2 deelnemers met een emb die we mochten volgen. \n\nTijdens het interviewen werkten we met een interviewguide met een vaste set interviewtopics die we in elk gesprek terug lieten komen. Deze interviewguide vormde een leidraad voor het gesprek en werd losjes gehanteerd. We bekeken aan het einde van het gesprek wel of alle thema’s aan de orde waren gekomen, maar de volgorde van de items zetten we niet van te voren vast en de manier waarop vragen werden gesteld ook niet, omdat we ook ruimte wilden geven aan de inbreng van de respondenten. \nKort gezegd waren de leidende thema’s tijdens de gesprekken: wat is belangrijk voor een goed leven van de geschaduwde en de ontwikkeling hierin, de woongeschiedenis van de persoon met een verstandelijke beperking die we volgden en het perspectief van de geïnterviewde hierop, het sociale netwerk en de sociale relaties van de persoon die we schaduwden, hoe het dagelijks leven van de geschaduwde invulling krijgt (binnen en buiten het instellingsterrein), hoe je het perspectief van de geschaduwde kunt leren kennen en de ervaringen van de geïnterviewde zelf met het dagelijks leven op het instellingsterrein.\n\nWe kregen dus per geschaduwde persoon met een ernstige verstandelijke beperking, twee aanvullende perspectieven – die van een verwant en van een begeleider – op het vormgeven van het goede leven van deze persoon. Deze aanvullende perspectieven moesten ons dus helpen om een beter idee te krijgen van het perspectief van mensen met een emb en wat zij nodig hebben voor een goed leven. \n\n\nFocusgroepen\n\nNaast het schaduwen van de personen met een beperking en het interviewen van hun verwanten en begeleiders, maakten we dus gebruik van twee focusgroepen. \nDe eerste focusgroep was gericht op het ontwikkelen van de een van eindproducten van dit onderzoek, namelijk de op te leveren lesbrieven die kunnen gebruikt binnen mbo en hbo opleidingen sociaal werk. Deze focusgroep bestond uit 9 deelnemers, waaronder docenten uit het mbo, docenten werkzaam binnen het hbo, twee experts op het thema mensen met een emb en een expert op het ontwikkelen van lesmateriaal. We stuurden de al deels ontwikkelde lesbrieven van te voren op en vroegen ze om mee te denken over de vorm, inhoud, de lesopdrachten en hoe we de lesbrieven het beste zouden kunnen verspreiden. Van deze focusgroep is geen letterlijk transcript gemaakt, maar een verslag. \n\nDe tweede focusgroep was gericht op het valideren van gegevens en het kunnen formuleren van aanbevelingen, waarvoor we betrokkenen uitnodigden die zich expert op het thema van dit onderzoek kunnen noemen. Voor alle betrokkenen bij deze focusgroep geldt dat ze zelf onderzoek doen of deden naar mensen met een verstandelijke beperking en een aantal van hen kon ook vanuit de rol van verwant aanvullend meedenken. Aan deze experts legden we uitkomsten van ons onderzoek voor en we spraken met hen over wat er in het licht van deze uitkomsten volgens hen nodig is om het leven van mensen met een verstandelijke beperking te verbeteren. De opzet van de focusgroep was als volgt: een van de onderzoekers presenteerde de belangrijkste uitkomsten van het onderzoek, waarna de aanwezigen elk de ruimte kregen om hierop een reactie te geven en eventueel ook aanbevelingen in te brengen."},{"typeName":"dansActionsToMinimizeLoss","multiple":false,"typeClass":"primitive","value":"nvt"},{"typeName":"dansWeighting","multiple":false,"typeClass":"primitive","value":"nvt"},{"typeName":"dansResponseRate","multiple":false,"typeClass":"primitive","value":"nvt"}]},"dansTemporalSpatial":{"displayName":"Temporal and Spatial Coverage","name":"dansTemporalSpatial","fields":[{"typeName":"dansTemporalCoverage","multiple":true,"typeClass":"primitive","value":["2020-2024"]},{"typeName":"dansSpatialCoverageControlled","multiple":true,"typeClass":"controlledVocabulary","value":["Netherlands"]}]},"dansDataVaultMetadata":{"displayName":"Data Vault 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