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[{"key": "dc.contributor.advisor", "value": "Aunola, Kaisa", "language": "", "element": "contributor", "qualifier": "advisor", "schema": "dc"}, {"key": "dc.contributor.author", "value": "Klemetti, Ira", "language": "", "element": "contributor", "qualifier": "author", "schema": "dc"}, {"key": "dc.contributor.author", "value": "Parviainen, Sanni", "language": "", "element": "contributor", "qualifier": "author", "schema": "dc"}, {"key": "dc.date.accessioned", "value": "2020-09-02T06:16:31Z", "language": null, "element": "date", "qualifier": "accessioned", "schema": "dc"}, {"key": "dc.date.available", "value": "2020-09-02T06:16:31Z", "language": null, "element": "date", "qualifier": "available", "schema": "dc"}, {"key": "dc.date.issued", "value": "2020", "language": "", "element": "date", "qualifier": "issued", "schema": "dc"}, {"key": "dc.identifier.uri", "value": "https://jyx.jyu.fi/handle/123456789/71596", "language": null, "element": "identifier", "qualifier": "uri", "schema": "dc"}, {"key": "dc.description.abstract", "value": "Usherin oireyhtym\u00e4 on perinn\u00f6llinen ja etenev\u00e4 kuulon\u00e4k\u00f6vamma. Usherin oireyhtym\u00e4st\u00e4 k\u00e4rsivill\u00e4, kuten muillakin kuulon\u00e4k\u00f6vammaisilla henkil\u00f6ill\u00e4 on normiv\u00e4est\u00f6\u00e4 enemm\u00e4n psykososiaalisen hyvinvoinnin ongelmia kuten yksin\u00e4isyytt\u00e4 ja masennusoireilua. T\u00e4m\u00e4n pro gradu -tutkielman tavoitteena oli tutkia psykososiaalista hyvinvointia, hy\u00f6dylliseksi koettuja tukimuotoja, hy\u00f6dytt\u00f6m\u00e4ksi tai jopa haitalliseksi koettuja tukimuotoja sek\u00e4 toivottua lis\u00e4tukea niiss\u00e4 perheiss\u00e4, joissa lapsella on todettu Usherin oireyhtym\u00e4. Lis\u00e4ksi haluttiin selvitt\u00e4\u00e4, millaisena Usher-lasten psykososiaalinen hyvinvointi n\u00e4ytt\u00e4ytyy ja onko Usher-lasten psykososiaalisessa hyvinvoinnissa eroja niiss\u00e4 perheiss\u00e4, joissa tukeen ollaan tyytyv\u00e4isi\u00e4 verrattuna niihin perheisiin, joissa tuki on koettu negatiivisesti. T\u00e4m\u00e4 pro gradu -tutkielma on osa Jyv\u00e4skyl\u00e4n yliopiston psykologian laitoksen JaksUs-tutkimusprojektia.\n T\u00e4m\u00e4 pro gradu -tutkielma keskittyy Usher-lasten vanhemmilta saatuihin kysely- ja haastatteluaineistoihin, joiden pohjalta analysoitiin perheiden kokemuksia saadusta hy\u00f6dyllisest\u00e4, hy\u00f6dytt\u00f6m\u00e4st\u00e4 ja haitallisesta tuesta sek\u00e4 siit\u00e4, millaista tukea perheet kaipaavat lis\u00e4\u00e4. Usher-lasten psykososiaalista hyvinvointia mitattiin Strengths and Difficulties Questionnaire (SDQ) -lomakkeella. Aineiston analysointi toteutettiin p\u00e4\u00e4osin laadullisesti aineistol\u00e4ht\u00f6isen analyysin menetelmin.\n T\u00e4ss\u00e4 tutkimuksessa perheet kokivat hy\u00f6dyllisiksi tukimuodoiksi erityisesti kuntoutusohjaajilta saadun tuen sek\u00e4 vertaistuen. Hy\u00f6dytt\u00f6m\u00e4ksi tai jopa haitalliseksi koetut tukimuodot liittyiv\u00e4t usein terveydenhuoltoj\u00e4rjestelm\u00e4n toimimattomuuteen. Terveydenhuollon sek\u00e4 kolmannen sektorin j\u00e4rjest\u00f6jen ty\u00f6ntekij\u00f6ilt\u00e4 toivottiin lis\u00e4\u00e4 tukea esimerkiksi lis\u00e4\u00e4m\u00e4ll\u00e4 yhteydenpitoa ja tehostamalla tiedonv\u00e4lityst\u00e4. T\u00e4m\u00e4n tutkimuksen perusteella Usherin oireyhtym\u00e4st\u00e4 k\u00e4rsivill\u00e4 lapsilla n\u00e4ytt\u00e4\u00e4 olevan normiv\u00e4est\u00f6\u00f6n kuuluvia lapsia enemm\u00e4n ongelmia yst\u00e4vyyssuhteissa SDQ-lomakkeella mitattuna. Tulos on samansuuntainen aiempien tutkimusten kanssa.\n Tulosten pohjalta voidaan p\u00e4\u00e4tell\u00e4, ett\u00e4 Usherin oireyhtym\u00e4\u00e4 sairastavien lasten ja heid\u00e4n perheidens\u00e4 psykososiaalista hyvinvointia tulee tukea entist\u00e4 tehokkaammin. Jatkossa on t\u00e4rke\u00e4\u00e4 tutkia Usher-lasten ja heid\u00e4n l\u00e4heistens\u00e4 hyvinvointia suuremmalla otoksella m\u00e4\u00e4r\u00e4llisin menetelmin. Suomessa Usherin oireyhtym\u00e4\u00e4 koskeva tutkimus on v\u00e4h\u00e4ist\u00e4 ja olemassa oleva tutkimus on keskittynyt p\u00e4\u00e4osin oireyhtym\u00e4n periytyvyyteen ja l\u00e4\u00e4ketieteellisiin hoitomuotoihin.", "language": "fi", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Submitted by Paivi Vuorio (paelvuor@jyu.fi) on 2020-09-02T06:16:31Z\nNo. of bitstreams: 0", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Made available in DSpace on 2020-09-02T06:16:31Z (GMT). No. of bitstreams: 0\n Previous issue date: 2020", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.format.extent", "value": "55", "language": "", "element": "format", "qualifier": "extent", "schema": "dc"}, {"key": "dc.format.mimetype", "value": "application/pdf", "language": null, "element": "format", "qualifier": "mimetype", "schema": "dc"}, {"key": "dc.language.iso", "value": "fin", "language": null, "element": "language", "qualifier": "iso", "schema": "dc"}, {"key": "dc.rights", "value": "In Copyright", "language": "en", "element": "rights", "qualifier": null, "schema": "dc"}, {"key": "dc.title", "value": "Tuki ja psykososiaalinen hyvinvointi perheiss\u00e4, joissa lapsella on Usherin oireyhtym\u00e4", "language": "", "element": "title", "qualifier": null, "schema": "dc"}, {"key": "dc.type", "value": "master thesis", "language": null, "element": "type", "qualifier": null, "schema": "dc"}, {"key": "dc.identifier.urn", "value": "URN:NBN:fi:jyu-202009025719", "language": "", "element": "identifier", "qualifier": "urn", "schema": "dc"}, {"key": "dc.type.ontasot", "value": "Pro gradu -tutkielma", "language": "fi", "element": "type", "qualifier": "ontasot", "schema": "dc"}, {"key": "dc.type.ontasot", "value": "Master\u2019s thesis", "language": "en", "element": "type", "qualifier": "ontasot", "schema": "dc"}, {"key": "dc.contributor.faculty", "value": "Kasvatustieteiden ja psykologian tiedekunta", "language": "fi", "element": "contributor", "qualifier": "faculty", "schema": "dc"}, {"key": "dc.contributor.faculty", "value": "Faculty of Education and Psychology", "language": "en", "element": "contributor", "qualifier": "faculty", "schema": "dc"}, {"key": "dc.contributor.department", "value": "Psykologian laitos", "language": "fi", "element": "contributor", "qualifier": "department", "schema": "dc"}, {"key": "dc.contributor.department", "value": "Department of Psychology", "language": "en", "element": "contributor", 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"dc.subject.yso", "value": "kuurosokeus", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "tukimuodot", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "vertaistuki", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "sosiaalinen tuki", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "oireyhtym\u00e4t", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.format.content", "value": "fulltext", "language": null, "element": "format", "qualifier": "content", "schema": "dc"}, {"key": "dc.rights.url", "value": "https://rightsstatements.org/page/InC/1.0/", "language": null, "element": "rights", "qualifier": "url", "schema": "dc"}, {"key": "dc.type.okm", "value": "G2", "language": null, "element": "type", 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