{"status":"OK","data":{"id":422676,"identifier":"FOBXXZ","persistentUrl":"https://doi.org/10.34894/FOBXXZ","protocol":"doi","authority":"10.34894","separator":"/","publisher":"DataverseNL","publicationDate":"2024-06-11","storageIdentifier":"surf://10.34894/FOBXXZ","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9997,"datasetType":"dataset","locks":[],"latestVersion":{"id":28341,"datasetId":422676,"datasetPersistentId":"doi:10.34894/FOBXXZ","datasetType":"dataset","storageIdentifier":"surf://10.34894/FOBXXZ","versionNumber":1,"internalVersionNumber":6,"versionMinorNumber":1,"versionState":"RELEASED","latestVersionPublishingState":"RELEASED","deaccessionLink":"","lastUpdateTime":"2024-06-11T13:11:03Z","releaseTime":"2024-06-11T13:11:03Z","createTime":"2024-06-11T13:10:57Z","publicationDate":"2024-06-11","citationDate":"2024-06-11","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9997,"license":{"name":"CC-BY-4.0","uri":"http://creativecommons.org/licenses/by/4.0","iconUri":"https://i.creativecommons.org/l/by/4.0/88x31.png"},"fileAccessRequest":true,"metadataBlocks":{"citation":{"displayName":"Citation Metadata","name":"citation","fields":[{"typeName":"title","multiple":false,"typeClass":"primitive","value":"Replication Data for: Chronic Sorrow"},{"typeName":"subtitle","multiple":false,"typeClass":"primitive","value":"The lived experiences of parents with a disabled child"},{"typeName":"author","multiple":true,"typeClass":"compound","value":[{"authorName":{"typeName":"authorName","multiple":false,"typeClass":"primitive","value":"Raap, Edith"},"authorAffiliation":{"typeName":"authorAffiliation","multiple":false,"typeClass":"primitive","value":"hu.nl"}}]},{"typeName":"datasetContact","multiple":true,"typeClass":"compound","value":[{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"Raap, Edith"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"hu.nl"}},{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"Onderzoeksupport"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"Hogeschool Utrecht"}}]},{"typeName":"dsDescription","multiple":true,"typeClass":"compound","value":[{"dsDescriptionValue":{"typeName":"dsDescriptionValue","multiple":false,"typeClass":"primitive","value":"These data originate from a study on chronic sorrow in parents conducted between 2020-2023 in the Netherlands. Chronic sorrow refers to ongoing feelings of grief and loss experienced by parents in relation to their child’s disability or chronic illness. The purpose of the research was to examine the lived experiences of parents and subsequently explore their implications for how healthcare- and social work professionals can support parents. <br>\n<br>\nAs an overarching design, Participatory Action Research (PAR) was used. PAR involves collective learning on a shared problem and the collaborative production of knowledge within a community. <br>\n<br>\nThe study consisted of two parts. The first part was an Interpretative Phenomenological Analysis (IPA) study on the lived experiences of six parents with severely disabled children. The second part of the study involved engaging in two three-hour sessions in homogeneous groups consisting of parents of a disabled child and professionals, followed by three three-hour sessions of mixed groups. It involved discussing the impact of chronic sorrow on the participants’ lives and work and explored how chronic sorrow in parents impacts daily communication between parents and professionals in caregiving contexts."},"dsDescriptionDate":{"typeName":"dsDescriptionDate","multiple":false,"typeClass":"primitive","value":"2024-05-14"}}]},{"typeName":"subject","multiple":true,"typeClass":"controlledVocabulary","value":["Social Sciences"]},{"typeName":"keyword","multiple":true,"typeClass":"compound","value":[{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"chronic sorrow"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"Levend verlies"}}]},{"typeName":"publication","multiple":true,"typeClass":"compound","value":[{"publicationCitation":{"typeName":"publicationCitation","multiple":false,"typeClass":"primitive","value":"Raap, E., Weille, K. L., Flierman, M., & Jeukens-Visser, M. (2024). “The Attitude Is Essential” The Experience of Two Mothers with Differing Educational Backgrounds Receiving Post-Discharge Intervention after Very Preterm Delivery. Studies in Clinical Social Work: Transforming Practice, Education and Research, 94(2), 109–135."},"publicationURL":{"typeName":"publicationURL","multiple":false,"typeClass":"primitive","value":"https://doi.org/10.1080/00377317.2023.2294903"}},{"publicationCitation":{"typeName":"publicationCitation","multiple":false,"typeClass":"primitive","value":"“It Is Up to Me Because I Gave Him This Life” How the Awareness of Being Permanently and Unconditionally Responsible Shapes the Experience of Chronic Sorrow in Parents of Disabled Children. In review"}},{"publicationCitation":{"typeName":"publicationCitation","multiple":false,"typeClass":"primitive","value":"“I Am the Mother of the Kind of Child You Dread Having” The Experiences of Parents With a Disabled Child, Living with Chronic Sorrow\nIn reveiw"}}]},{"typeName":"notesText","multiple":false,"typeClass":"primitive","value":"This dataset contains the interview questions and instructions, as well as the topic list used during the interviews with parents of children with severe disabilities. <br>\n<br>\nFurthermore, (partial) datasets will be uploaded to this dataset in the future. All data is currently being evaluated for suitability to upload. Depending on the success of the pseudonymization process, the dataset may consist of highly pseudonymized transcripts of the interviews and/or highly pseudonymized dataset(s) containing the coding process and code collection. Additionally, when the dataset(s) are uploaded, blank versions of the informed consent forms will be included as well, in addition to any other necessary data documentation to aid interpretation of this data."},{"typeName":"language","multiple":true,"typeClass":"controlledVocabulary","value":["Dutch"]},{"typeName":"productionPlace","multiple":true,"typeClass":"primitive","value":["The Netherlands"]},{"typeName":"depositor","multiple":false,"typeClass":"primitive","value":"Raap, Edith"},{"typeName":"dateOfDeposit","multiple":false,"typeClass":"primitive","value":"2024-05-14"},{"typeName":"dateOfCollection","multiple":true,"typeClass":"compound","value":[{"dateOfCollectionStart":{"typeName":"dateOfCollectionStart","multiple":false,"typeClass":"primitive","value":"2020-09-22"},"dateOfCollectionEnd":{"typeName":"dateOfCollectionEnd","multiple":false,"typeClass":"primitive","value":"2021-06-02"}}]},{"typeName":"software","multiple":true,"typeClass":"compound","value":[{"softwareName":{"typeName":"softwareName","multiple":false,"typeClass":"primitive","value":"Atlas.ti"}}]}]},"dansDataVaultMetadata":{"displayName":"Data Vault Metadata","name":"dansDataVaultMetadata","fields":[{"typeName":"dansDataversePid","multiple":false,"typeClass":"primitive","value":"doi:10.34894/FOBXXZ"},{"typeName":"dansDataversePidVersion","multiple":false,"typeClass":"primitive","value":"1.1"},{"typeName":"dansBagId","multiple":false,"typeClass":"primitive","value":"urn:uuid:eb97cd35-d9e3-4e65-938b-a34d964d2ae0"},{"typeName":"dansNbn","multiple":false,"typeClass":"primitive","value":"urn:nbn:nl:ui:13-456d2ae0-df0f-41dc-acf8-411e8afb1c67"}]}},"files":[{"description":"Interview questions and instructions.","label":"20240530_Interviewvragen.pdf","restricted":false,"version":1,"datasetVersionId":28341,"categories":["Documentation"],"dataFile":{"id":425376,"persistentId":"","filename":"20240530_Interviewvragen.pdf","contentType":"application/pdf","friendlyType":"Adobe PDF","filesize":140663,"description":"Interview questions and instructions.","categories":["Documentation"],"storageIdentifier":"surf://store:190028f2f54-b37429fa0e48","rootDataFileId":-1,"checksum":{"type":"SHA-1","value":"a16ba3280b25cc3450ad6b39de7c34e7e9d2276a"},"tabularData":false,"creationDate":"2024-06-10","publicationDate":"2024-06-11","lastUpdateTime":"2024-06-11T13:11:03Z","fileAccessRequest":true}},{"description":"Topic list parents, used during the interviews.","label":"20240530_Topiclijst_ouders.pdf","restricted":false,"version":1,"datasetVersionId":28341,"categories":["Documentation"],"dataFile":{"id":425375,"persistentId":"","filename":"20240530_Topiclijst_ouders.pdf","contentType":"application/pdf","friendlyType":"Adobe PDF","filesize":81668,"description":"Topic list parents, used during the interviews.","categories":["Documentation"],"storageIdentifier":"surf://store:19002922506-970286316f04","rootDataFileId":-1,"checksum":{"type":"SHA-1","value":"371b57e742a6e8b8bde29758bb99f2a680ba7f3d"},"tabularData":false,"creationDate":"2024-06-10","publicationDate":"2024-06-11","lastUpdateTime":"2024-06-11T13:11:03Z","fileAccessRequest":true}},{"description":"General information regarding uploaded documents.","label":"README_Chronic_Sorrow.txt","restricted":false,"version":1,"datasetVersionId":28341,"dataFile":{"id":425377,"persistentId":"","filename":"README_Chronic_Sorrow.txt","contentType":"text/plain","friendlyType":"Plain Text","filesize":2375,"description":"General information regarding uploaded documents.","storageIdentifier":"surf://store:190028ff762-b2e7d94209bb","rootDataFileId":-1,"checksum":{"type":"SHA-1","value":"3c9973f0cfda552cbb9576f501fdde8c63fd23a8"},"tabularData":false,"creationDate":"2024-06-10","publicationDate":"2024-06-11","lastUpdateTime":"2024-06-11T13:11:03Z","fileAccessRequest":true}}]}}}