{"status":"OK","data":{"id":616377,"identifier":"SS/SE9RQM","persistentUrl":"https://doi.org/10.17026/SS/SE9RQM","protocol":"doi","authority":"10.17026","separator":"/","publisher":"DANS Data Station Social Sciences and Humanities","publicationDate":"2025-07-11","storageIdentifier":"surf://10.17026/SS/SE9RQM","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9984,"datasetType":"dataset","locks":[],"latestVersion":{"id":28107,"datasetId":616377,"datasetPersistentId":"doi:10.17026/SS/SE9RQM","datasetType":"dataset","storageIdentifier":"surf://10.17026/SS/SE9RQM","versionNumber":1,"internalVersionNumber":16,"versionMinorNumber":0,"versionState":"RELEASED","latestVersionPublishingState":"RELEASED","deaccessionLink":"","distributionDate":"2025-07-08","productionDate":"2025-02-04","UNF":"UNF:6:dBrfBXRC80KEq9JzoMWxTA==","lastUpdateTime":"2025-07-11T08:15:17Z","releaseTime":"2025-07-11T08:15:17Z","createTime":"2025-07-08T10:17:41Z","publicationDate":"2025-07-11","citationDate":"2025-07-11","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9984,"license":{"name":"DANS Licence","uri":"https://doi.org/10.17026/fp39-0x58","iconUri":""},"fileAccessRequest":true,"metadataBlocks":{"citation":{"displayName":"Citation Metadata","name":"citation","fields":[{"typeName":"title","multiple":false,"typeClass":"primitive","value":"Monitor kwaliteit van leven van naasten van mensen met een beperking"},{"typeName":"subtitle","multiple":false,"typeClass":"primitive","value":"Inzichten voor beleid, praktijk en onderzoek"},{"typeName":"alternativeURL","multiple":false,"typeClass":"primitive","value":"https://www.nivel.nl/nl/project/kwaliteit-van-leven-ervaringen-en-ondersteuningsbehoeften-van-naasten-van-mensen-met-een"},{"typeName":"author","multiple":true,"typeClass":"compound","value":[{"authorName":{"typeName":"authorName","multiple":false,"typeClass":"primitive","value":"Zonneveld, Ellen"},"authorAffiliation":{"typeName":"authorAffiliation","multiple":false,"typeClass":"primitive","value":"https://ror.org/015xq7480"},"authorIdentifierScheme":{"typeName":"authorIdentifierScheme","multiple":false,"typeClass":"controlledVocabulary","value":"ORCID"},"authorIdentifier":{"typeName":"authorIdentifier","multiple":false,"typeClass":"primitive","value":"0000-0001-7263-9194"}}]},{"typeName":"datasetContact","multiple":true,"typeClass":"compound","value":[{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"Raad van Bestuur"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"Nivel"}}]},{"typeName":"dsDescription","multiple":true,"typeClass":"compound","value":[{"dsDescriptionValue":{"typeName":"dsDescriptionValue","multiple":false,"typeClass":"primitive","value":"De dataset bevat kwantitatieve en kwalitatieve data over de ervaringen van naasten van mensen met beperking en een daaruit voortvloeiende langdurige, intensieve zorgbehoefte. De data geven inzicht in hoe naasten, zoals ouders, broers en zussen, partners en kinderen, hun leven en de zorg ervaren en waarderen, welke behoeften zij hebben en hoe dit over de jaren heen verandert.\nDe data zijn verzameld middels vragenlijsten onder 348 naasten en 15 interviews met naasten. Dataverzameling vond plaats tussen 2023 en 2025. Het sluit aan op een in 2019 door ons eerder uitgevoerde eerste meting onder naasten."},"dsDescriptionDate":{"typeName":"dsDescriptionDate","multiple":false,"typeClass":"primitive","value":"2025-07-08"}}]},{"typeName":"subject","multiple":true,"typeClass":"controlledVocabulary","value":["Medicine, Health and Life Sciences","Social Sciences"]},{"typeName":"keyword","multiple":true,"typeClass":"compound","value":[{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"Quality of Life"},"keywordVocabulary":{"typeName":"keywordVocabulary","multiple":false,"typeClass":"primitive","value":"Quality of Life"},"keywordVocabularyURI":{"typeName":"keywordVocabularyURI","multiple":false,"typeClass":"primitive","value":"https://www.ncbi.nlm.nih.gov/mesh/?term=quality+of+life"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"Family 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De huidige dataset is het vervolg op deze eerste meting. Resultaten van de eerste meting zijn gepubliceerd onder de volgende verwijzing: Springvloet, L., Schelven, F. van, Kroezen, M., Luijkx, J., Brug, A. ten, Putten, A. van der, Embregts, P., Boeije, H. Kwaliteit van leven van naasten van mensen met een beperking. Utrecht: Nivel, 2020. 75 p."}}]},{"typeName":"software","multiple":true,"typeClass":"compound","value":[{"softwareName":{"typeName":"softwareName","multiple":false,"typeClass":"primitive","value":"Stata"},"softwareVersion":{"typeName":"softwareVersion","multiple":false,"typeClass":"primitive","value":"16.1"}}]}]},"dansRights":{"displayName":"Rights Metadata","name":"dansRights","fields":[{"typeName":"dansRightsHolder","multiple":true,"typeClass":"primitive","value":["Nivel"]},{"typeName":"dansPersonalDataPresent","multiple":false,"typeClass":"controlledVocabulary","value":"No"},{"typeName":"dansMetadataLanguage","multiple":true,"typeClass":"controlledVocabulary","value":["Dutch"]}]},"dansRelationMetadata":{"displayName":"Relation 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mensen met een beperking en een langdurige, intensieve zorgbehoefte. Het gaat hierbij om naasten van verschillende groepen mensen met een beperking of aandoening, waaronder verstandelijke beperkingen, lichamelijke beperkingen, zintuiglijke beperkingen, niet-aangeboren hersenletsel, gedragsproblematiek en combinaties hiervan. \nDe naasten zijn voornamelijk moeders, vaders, zussen, broers of partners maar ook andere familierelaties zijn vertegenwoordigd.\nEen deel van de familieleden woont volledig bij de naaste thuis en anderen wonen in een zorginstelling, wooninitiatief of (begeleid) zelfstandig."]},{"typeName":"dansSamplingProcedureFreeText","multiple":false,"typeClass":"primitive","value":"Voor het onderzoek is in 2023 een nieuw panel opgericht: het Nivel Panel Naasten (NPN). De deelnemers aan dit panel zijn geworven via diverse kanalen:\n(1) Deelnemers aan eerder Nivel-onderzoek over naasten in 2019 en die tijdens de coronapandemie zijn aangeschreven; (2) Leden van het Panel Samen Leven die een familielid hebben met een lichte of matige verstandelijke beperking; (3) leden van het Consumenten Panel gezondheidszorg die op een vragenlijst hebben aangegeven dat zij naaste zijn van iemand met een beperking; (4) Verschillende organisaties hebben een oproep verspreid in hun nieuwsbrief en op LinkedIn; (5) Voor het werven mensen met een migratieachtergrond, werkten we samen met Labyrinth, een onderzoeksbureau met veel contacten met mensen met een migratieachtergrond. Zij hebben middels hun panel en netwerken naasten benaderd.\n\nVoordat respondenten lid konden worden van het NPN, kregen zij aanvullende informatie over het onderzoek, een informed consentformulier en een aanmeldvragenlijst. In de aanmeldvragenlijst werden algemene achtergrondgegevens van respondenten zelf en van de persoon met een \nbeperking uitgevraagd, zoals leeftijd, geslacht, afkomst en de relatie tot de persoon met een beperking. Ook bevatte deze aanmeldvragenlijst vragen over het soort en de ernst van de beperkingen en aandoeningen en mogelijke ondersteuning vanuit de Wlz, Wmo, Zvw en Jeugdwet. Op basis van deze gegevens werden respondenten geselecteerd om mee te doen aan het vragenlijstonderzoek en vervolgens om lid te worden van het NPN. Het is mogelijk dat naasten meerdere mensen kennen met een langdurige zorgbehoefte. Zij hebben de aanmeldvragenlijst en de onderzoeksvragenlijst ingevuld met één persoon in gedachten.\n\nAan het eind van de vragenlijst hebben we respondenten gevraagd of we hen mochten benaderen voor een interview. 221 respondenten gaven aan dat we hen hiervoor mochten benaderen. Bij de selectie van participanten voor de interviews hebben we rekening gehouden met de relatie die zij hebben tot hun familielid, de aard en ernst van de beperking, man-vrouwverdeling, migratieachtergrond en het soort gebeurtenis dat zij op de vragenlijst hadden ingevuld als meest\nbelangrijk. Hiermee hebben we een zo breed mogelijke groep van 26 naasten aangeschreven."},{"typeName":"dansDataCollectionSituation","multiple":false,"typeClass":"primitive","value":"De interviews zijn gehouden met 7 moeders, 4 vaders, 1 broer, 3 zussen en 1 partner. Aan één interview deden zowel een vader als moeder mee.  De interviews waren voornamelijk bij de participant thuis en duurden gemiddeld 1 uur en 36 minuten."},{"typeName":"dansResponseRate","multiple":false,"typeClass":"primitive","value":"Respons op de survey: 85%\nRespons op de interviews: 15 van de 26 benaderde naasten namen deel (58%)"}]},"dansTemporalSpatial":{"displayName":"Temporal and Spatial Coverage","name":"dansTemporalSpatial","fields":[{"typeName":"dansTemporalCoverage","multiple":true,"typeClass":"primitive","value":["2023-2025"]},{"typeName":"dansSpatialCoverageControlled","multiple":true,"typeClass":"controlledVocabulary","value":["Netherlands"]}]},"dansDataVaultMetadata":{"displayName":"Data Vault 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