{"data":{"id":"10.6084/m9.figshare.769283","type":"dois","attributes":{"doi":"10.6084/m9.figshare.769283","prefix":"10.6084","suffix":"m9.figshare.769283","identifiers":[],"alternateIdentifiers":[],"creators":[{"name":"Allen-Collinson, Jacquelyn","nameType":"Personal","givenName":"Jacquelyn","familyName":"Allen-Collinson","affiliation":[],"nameIdentifiers":[{"schemeUri":"https://orcid.org","nameIdentifier":"https://orcid.org/0000-0003-2146-8000","nameIdentifierScheme":"ORCID"}]},{"name":"Pavey, Amanda","nameType":"Personal","givenName":"Amanda","familyName":"Pavey","affiliation":[],"nameIdentifiers":[]},{"name":"Pavey, Toby","nameType":"Personal","givenName":"Toby","familyName":"Pavey","affiliation":[],"nameIdentifiers":[]}],"titles":[{"title":"Pavey, A, Allen-Collinson, J and Pavey, T (2013) The lived experience of diagnosis delivery in Motor Neurone Disease: a sociological-phenomenological study, Sociological Research Online, 18 (2)."}],"publisher":"figshare","container":{},"publicationYear":2013,"subjects":[{"subject":"Sociology"},{"subject":"FOS: Sociology","schemeUri":"http://www.oecd.org/science/inno/38235147.pdf","subjectScheme":"Fields of Science and Technology (FOS)"},{"subject":"FOS: Sociology","subjectScheme":"Fields of Science and Technology (FOS)"}],"contributors":[],"dates":[{"date":"2013-08-12","dateType":"Created"},{"date":"2013-12-24","dateType":"Updated"},{"date":"2013","dateType":"Issued"}],"language":null,"types":{"ris":"DATA","bibtex":"misc","citeproc":"dataset","schemaOrg":"Dataset","resourceType":"Dataset","resourceTypeGeneral":"Dataset"},"relatedIdentifiers":[],"relatedItems":[],"sizes":["1337538 Bytes"],"formats":[],"version":null,"rightsList":[{"rights":"Creative Commons Attribution 4.0 International","rightsUri":"https://creativecommons.org/licenses/by/4.0/legalcode","schemeUri":"https://spdx.org/licenses/","rightsIdentifier":"cc-by-4.0","rightsIdentifierScheme":"SPDX"}],"descriptions":[{"description":"\u003cstrong\u003eAbstract\u003c/strong\u003e Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest.","descriptionType":"Abstract"}],"geoLocations":[],"fundingReferences":[],"xml":"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","url":"https://figshare.com/articles/dataset/Pavey_A_Allen_Collinson_J_and_Pavey_T_2013_The_lived_experience_of_diagnosis_delivery_in_Motor_Neurone_Disease_a_sociological_phenomenological_study_Sociological_Research_Online_18_2_/769283","contentUrl":null,"metadataVersion":2,"schemaVersion":"http://datacite.org/schema/kernel-4","source":"mds","isActive":true,"state":"findable","reason":null,"viewCount":0,"viewsOverTime":[],"downloadCount":0,"downloadsOverTime":[],"referenceCount":0,"citationCount":0,"citationsOverTime":[],"partCount":0,"partOfCount":0,"versionCount":0,"versionOfCount":0,"created":"2013-12-24T17:58:12.000Z","registered":"2013-12-24T17:58:13.000Z","published":"2013","updated":"2020-09-05T01:36:20.000Z"},"relationships":{"client":{"data":{"id":"figshare.ars","type":"clients"}},"provider":{"data":{"id":"otjm","type":"providers"}},"media":{"data":{"id":"10.6084/m9.figshare.769283","type":"media"}},"references":{"data":[]},"citations":{"data":[]},"parts":{"data":[]},"partOf":{"data":[]},"versions":{"data":[]},"versionOf":{"data":[]}}}}