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[{"key": "dc.contributor.advisor", "value": "Pirttimaa, Raija", "language": "", "element": "contributor", "qualifier": "advisor", "schema": "dc"}, {"key": "dc.contributor.author", "value": "Nystedt, Ursula", "language": null, "element": "contributor", "qualifier": "author", "schema": "dc"}, {"key": "dc.date.accessioned", "value": "2015-05-12T11:44:37Z", "language": "", "element": "date", "qualifier": "accessioned", "schema": "dc"}, {"key": "dc.date.available", "value": "2015-05-12T11:44:37Z", "language": "", "element": "date", "qualifier": "available", "schema": "dc"}, {"key": "dc.date.issued", "value": "2015", "language": null, "element": "date", "qualifier": "issued", "schema": "dc"}, {"key": "dc.identifier.other", "value": "oai:jykdok.linneanet.fi:1473551", "language": null, "element": "identifier", "qualifier": "other", "schema": "dc"}, {"key": "dc.identifier.uri", "value": "https://jyx.jyu.fi/handle/123456789/45866", "language": "", "element": "identifier", "qualifier": "uri", "schema": "dc"}, {"key": "dc.description.abstract", "value": "Tutkimus selvitt\u00e4\u00e4 perheiden kokemuksia tuesta, jota heille oli tarjottu sairaan\r\ntai vammaisen lapsen syntyess\u00e4 sek\u00e4 muissa perheen el\u00e4m\u00e4nkaaren eri vaiheissa.\r\nTutkimuksessa selvitettiin my\u00f6s tukeen kohdistuvia toiveita sek\u00e4 vertaistuesta\r\nkertyneit\u00e4 kokemuksia.\r\nTutkimus toteutettiin haastattelemalla nelj\u00e4\u00e4 sairaan tai vammaisen lapsen perhett\u00e4.\r\nAineisto analysoitiin jakamalla perheen kehitysvaiheet viiteen luokkaan:\r\n1. Vauvaik\u00e4isen lapsen perhe, 2. Leikki-ik\u00e4isen lapsen perhe, 3. Kouluik\u00e4isen\r\nlapsen perhe, 4. Maailmalle l\u00e4htev\u00e4n nuoren perhe ja 5. Ik\u00e4\u00e4ntyv\u00e4 perhe. Perheelle\r\ntarjottua tukea, siihen kohdistuneita toiveita sek\u00e4 perheiden kokemuksia\r\nvertaistuesta tarkasteltiin n\u00e4iden viiden luokan n\u00e4k\u00f6kulmasta. Tutkimusmenetelm\u00e4n\u00e4\r\nk\u00e4ytettiin sis\u00e4ll\u00f6n analyysi\u00e4.\r\nL\u00f6yd\u00f6sten perusteella useimmiten perheet kokevat, ett\u00e4 liikuntavammaisille\r\ntarkoitettu fysioterapeuttinen tuki on j\u00e4rjestetty tarpeita vastaavaksi ja lapsen\r\nhyv\u00e4n itsetunnon kehittymist\u00e4 ja perhett\u00e4 tukevaksi. Erilaisten tukien saaminen\r\nolisi kuitenkin teht\u00e4v\u00e4 perheille selke\u00e4mm\u00e4ksi esimerkiksi palveluohjauksen\r\navulla. Koulun tuki perheille oli haastateltujen perheiden mielest\u00e4 vaihtelevaa.\r\nPerheet kokevat, ett\u00e4 akateemisiin taitoihin panostetaan paljon, ehk\u00e4p\u00e4 jopa\r\narjen hallinnan taitojen oppimisen kustannuksella. Vertaistuki koettiin antoisaksi\r\nja vahvaksi, se voi kulkea perheiden eri el\u00e4m\u00e4nvaiheiden l\u00e4pi koko lapsen\r\nkasvun ajan ja tukea el\u00e4m\u00e4n haastavissa muutosvaiheissa.", "language": "fi", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.abstract", "value": "The study examines and evaluates the experiences and the opinions of families\r\nwith a sick or a disabled child over the support for the child and the family. The\r\nexperiences of the families are studied from the moment of the child\u2019s birth and\r\nlater in the different stages of the evolution of the family. The second focus of\r\nthe study was to map the families\u2019 aspirations for the support for the child and\r\nthe whole family. Lastly, the study engaged with the experiences of the families\r\nwith peer support.\r\nThe research data was collected by interviewing four families with a sick\r\nor a disabled child. During the contents analysis of the data the development of\r\nthe family was divided to five distinct categories: 1. the infant stage, 2. the toddler\r\nstage, 3. the family with school aged children, 4. the family with juvenile\r\nmembers and 5. the ageing family. The type and quality of the support that was\r\nreceived by the families were studied through using these categories.\r\nThe results of the study are divided into three outcomes. Firstly, the study\r\nsuggests that families\u2019 considered the physical support directed to their children\r\nis generally sufficient to respond to the needs of their child and the family.\r\nIn particular, the study found that the physical support encouraged the child\u2019s\r\nself-esteem. However, the families under study hoped that the different types of\r\nsupport should be made clearer and easier to approach, for instance through an \r\nsupport system counsellor /advisor. Secondly, the interviewed families considered\r\nthat the support offered by schools varied. The families felt that school\r\npaid great deal of attention to academic skills and abilities. However, this was\r\nsometimes done on the expense of practical skills (that are equally important for\r\nthe children). Lastly, the families considered peer support as a strong source of\r\nsupport that can be sustained through different stages of the child\u2019s and the\r\nfamilies\u2019 development. Peer support can be a vital source of support when making\r\nchallenging life choices and when facing great changes.", "language": "", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.abstract", "value": "Syftet med denna studie var att se n\u00e4rmare p\u00e5 hur st\u00f6det till en familj med ett\r\nsjukt eller ett funktionshindrat barn ser ut i de olika faserna som familjen g\u00e5r\r\nigenom under barnets uppv\u00e4xt. Dessutom st\u00e4lldes fr\u00e5gor ang\u00e5ende familjernas\r\n\u00f6nskem\u00e5l och f\u00f6rv\u00e4ntningar g\u00e4llande st\u00f6det till barnet och familjen samt redog\u00f6relser\r\nav familjens eventuella erfarenheter av (s.k.) kompisst\u00f6d.\r\nForskningsdata samlades genom att intervjua fyra familjer med ett sjukt\r\neller funktionshindrat barn. Under analysen delades data i fem kategorier som\r\nutg\u00f6r familjernas olika utvecklingsfaser. 1. Sp\u00e4dbarns\u00e5ldern, 2. Lek\u00e5ldern, 3.\r\nSkol\u00e5ldern, 4. Sena ton\u00e5ren och sj\u00e4lvst\u00e4ndigt boende och 5. Den \u00e5ldrande familjen.\r\nMed hj\u00e4lp av dessa kategorier och med inneh\u00e5llsanalysen tittade man n\u00e4rmare\r\np\u00e5 varje utvecklingsfas och p\u00e5 st\u00f6det som fanns till barnet och familjen\r\nunder dessa faser. Dessutom tittade man n\u00e4rmare p\u00e5 vad familjen f\u00f6rv\u00e4ntade\r\nsig av st\u00f6det under de olika utvecklingsfaserna samt vilka erfarenheter familjerna\r\nhade av (s.k.) kompisst\u00f6d.\r\nDet visade sig att familjerna huvudsakligen uppfattade att de funktionshindrade\r\nbarnens fysikaliska (st\u00f6d)terapi var v\u00e4l ordnad och viktig f\u00f6r hela familjen\r\noch att terapin ocks\u00e5 befr\u00e4mjade barnets psykiska utveckling p\u00e5 ett positivt\r\ns\u00e4tt genom att st\u00e4rka sj\u00e4lvk\u00e4nslan hos barnet. D\u00e4remot \u00f6nskade sig familjerna\r\natt det skulle vara l\u00e4ttare att f\u00e5 fram information kring de olika st\u00f6d alternativen\r\nsom finns att tillg\u00e5 f\u00f6r familjer med sjukt eller funktionshindrat barn.\r\nFamiljerna som deltog i forskningsprojektet hade olika uppfattningar kring st\u00f6-\r\ndet som barnet f\u00e5tt under sin skoltid i allm\u00e4nhet var f\u00f6r\u00e4ldrarna av den \u00e5sikten\r\natt man i skolan lade kanske v\u00e4l mycket vikt p\u00e5 de akademiska f\u00e4rdigheterna, \r\nvissa g\u00e5nger till och med p\u00e5 de dagliga f\u00e4rdigheternas bekostnad. Kompisst\u00f6-\r\ndet ans\u00e5gs som en givande st\u00f6dform som kan medf\u00f6ra ett rikt st\u00f6d f\u00f6r familjen\r\noch individen i de olika faserna av livet.", "language": "", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Submitted using Plone Publishing form by Ursula Nystedt-Rintakumpu (uranmany) on 2015-05-12 11:44:37.159648. Form: Pro gradu -lomake (https://kirjasto.jyu.fi/julkaisut/julkaisulomakkeet/pro-gradu-lomake). JyX data: [jyx_publishing-allowed (fi) =True]", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Submitted by jyx lomake-julkaisija (jyx-julkaisija@noreply.fi) on 2015-05-12T11:44:37Z\r\nNo. of bitstreams: 2\r\nURN:NBN:fi:jyu-201505121822.pdf: 979528 bytes, checksum: 69676014d10b65c252c5e4d7ba324b85 (MD5)\r\nlicense.html: 4864 bytes, checksum: d2fa499d0b97a52e26566a4e214d41f7 (MD5)", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Made available in DSpace on 2015-05-12T11:44:37Z (GMT). No. of bitstreams: 2\r\nURN:NBN:fi:jyu-201505121822.pdf: 979528 bytes, checksum: 69676014d10b65c252c5e4d7ba324b85 (MD5)\r\nlicense.html: 4864 bytes, checksum: d2fa499d0b97a52e26566a4e214d41f7 (MD5)\r\n Previous issue date: 2015", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.format.extent", "value": "1 verkkoaineisto (88 sivua)", "language": null, "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.subject.other", "value": "lapsi", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "perhe", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "vammaisuus", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "tuki", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "vertaistuki", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.title", "value": "Kest\u00e4\u00e4k\u00f6 verkko? : sairaan tai vammaisen lapsen perheen tukiverkoston muodostuminen", "language": null, "element": "title", "qualifier": null, "schema": "dc"}, {"key": "dc.title.alternative", "value": "Sairaan tai vammaisen lapsen perheen tukiverkoston muodostuminen", "language": null, "element": "title", "qualifier": "alternative", "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-201505121822", "language": null, "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 tiedekunta", "language": "fi", "element": "contributor", "qualifier": "faculty", "schema": "dc"}, {"key": "dc.contributor.faculty", "value": "Faculty of Education", "language": "en", "element": "contributor", "qualifier": "faculty", "schema": "dc"}, {"key": "dc.contributor.department", "value": "Kasvatustieteiden laitos", "language": "fi", "element": "contributor", "qualifier": "department", "schema": "dc"}, {"key": "dc.contributor.department", "value": "Department of Education", "language": "en", "element": "contributor", "qualifier": "department", "schema": "dc"}, {"key": "dc.contributor.organization", "value": "University of Jyv\u00e4skyl\u00e4", "language": "en", "element": "contributor", "qualifier": "organization", "schema": "dc"}, {"key": "dc.contributor.organization", "value": "Jyv\u00e4skyl\u00e4n yliopisto", "language": "fi", "element": "contributor", "qualifier": "organization", "schema": "dc"}, {"key": "dc.subject.discipline", "value": "Erityispedagogiikka", "language": "fi", "element": "subject", "qualifier": "discipline", "schema": "dc"}, {"key": "dc.subject.discipline", "value": "Special Education", "language": "en", "element": "subject", "qualifier": "discipline", "schema": "dc"}, {"key": "dc.date.updated", "value": "2015-05-12T11:44:38Z", "language": "", "element": "date", "qualifier": "updated", "schema": "dc"}, {"key": "yvv.contractresearch.funding", "value": "0", "language": "", "element": "contractresearch", "qualifier": "funding", "schema": "yvv"}, {"key": "dc.type.coar", "value": "http://purl.org/coar/resource_type/c_bdcc", "language": null, "element": "type", "qualifier": "coar", "schema": "dc"}, {"key": "dc.rights.accesslevel", "value": "openAccess", "language": "fi", "element": "rights", "qualifier": "accesslevel", "schema": "dc"}, {"key": "dc.type.publication", "value": "masterThesis", "language": null, "element": "type", "qualifier": "publication", "schema": "dc"}, {"key": "dc.subject.oppiainekoodi", "value": "101", "language": null, "element": "subject", "qualifier": "oppiainekoodi", "schema": "dc"}, {"key": "dc.subject.yso", "value": "lapset", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "perhe", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "vammaisuus", "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": "tukimuodot", "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", "qualifier": "okm", "schema": "dc"}]
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