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[{"key": "dc.contributor.author", "value": "Toija, Anu", "language": null, "element": "contributor", "qualifier": "author", "schema": "dc"}, {"key": "dc.date.accessioned", "value": "2011-10-10T19:06:20Z", "language": "", "element": "date", "qualifier": "accessioned", "schema": "dc"}, {"key": "dc.date.available", "value": "2011-10-10T19:06:20Z", "language": "", "element": "date", "qualifier": "available", "schema": "dc"}, {"key": "dc.date.issued", "value": "2011", "language": null, "element": "date", "qualifier": "issued", "schema": "dc"}, {"key": "dc.identifier.other", "value": "oai:jykdok.linneanet.fi:1185134", "language": null, "element": "identifier", "qualifier": "other", "schema": "dc"}, {"key": "dc.identifier.uri", "value": "https://jyx.jyu.fi/handle/123456789/36788", "language": "", "element": "identifier", "qualifier": "uri", "schema": "dc"}, {"key": "dc.description.abstract", "value": "T\u00e4m\u00e4n tutkimuksen tarkoituksena oli tutkia harvinaista sairautta sairastavan lapsen vanhempien kokemuksia vertaistuen merkityksest\u00e4 vanhemmille ja lapselle. Tutkimuksen avulla pyrittiin my\u00f6s ymm\u00e4rt\u00e4m\u00e4\u00e4n, mink\u00e4laisia haasteita sairaan lapsen syntyminen voi aiheuttaa ja mink\u00e4lainen on ammattilaisen rooli perheiden tukemisessa. Tutkimukseen osallistui nelj\u00e4toista harvinaista sairautta sairastavan lapsen vanhempaa. Tutkimus oli luoteeltaan laadullinen ja aineisto ker\u00e4ttiin tutkimushenkil\u00f6ilt\u00e4 esseetyyppisten kertomusten muodossa. Aineisto analysoitiin sis\u00e4ll\u00f6nanalyysin avulla.\r\nHarvinaissairaan lapsen vanhemmat olivat h\u00e4mmentyneit\u00e4 uuden el\u00e4m\u00e4ntilanteen \u00e4\u00e4rell\u00e4. He tekiv\u00e4t kuin hypyn tuntemattomaan. Ep\u00e4varma ja huolent\u00e4ytteinen el\u00e4m\u00e4 aiheutti voimavarojen ehtymist\u00e4 ja vanhemmilla oli suuri tiedon ja keskustelun tarve. Vanhemmat joutuivat olemaan lapsensa hoidon kokonaiskuvan hallitsijana haluamattaankin. Ammattilaisilta saadun tiedon ja tuen m\u00e4\u00e4r\u00e4 sek\u00e4 laatu oli hyvin vaihtelevaa. Vanhemmat joutuivat itse hakemaan aktiivisesti tietoa ja tukea pysty\u00e4kseen hoitamaan sairasta lastaan. Vanhemmat etsiv\u00e4t vertaisiaan ja saivat heilt\u00e4 tietoa ja tukea.\r\nVertaistuen anniksi nousi kolme p\u00e4\u00e4teemaa, selviytyminen, v\u00e4litt\u00e4minen ja jaettu kokemus. Selviytyminen on tietotaidon karttumista ja voimavarojen saamista sairauden kanssa el\u00e4miseen. V\u00e4litt\u00e4minen tarkoittaa merkityksellist\u00e4 ihmissuhdetta ja aitoa kohtaamista. Jaettu kokemus merkitsee yhteist\u00e4 kokemusta ja vastavuoroisuutta. Vanhemmat uskoivat sairaan lapsensa hy\u00f6tyv\u00e4n hankitusta vertaistuesta samoilla tavoilla kuin itse, mutta vertaistuen merkityksien jakaantuvan eri tavoilla pienen\u00e4 lapsena ja my\u00f6hemmin lapsen kasvaessa. Vanhemmat kokivat, ett\u00e4 vertaistuen avulla he oppivat ymm\u00e4rt\u00e4m\u00e4\u00e4n paremmin lapsensa sairautta ja siksi uskoivat my\u00f6s lapsensa hy\u00f6tyv\u00e4n vanhempien saamasta vertaistuesta. Vertaistuen haasteina n\u00e4htiin olevan sen vaihteleva taso ja lasten yksil\u00f6llisyys, jolloin vanhempien oma ajattelu korostui. Vertaistuen hankkiminen vaati voimaa ja omaa aktiivisuutta. Vertaistukiryhm\u00e4ss\u00e4 t\u00e4ytyi jaksaa olla my\u00f6s muiden kokemusten vastaanottajana.\r\nHarvinaista sairautta sairastavien lasten vanhempien vertaistukikokemuksista tehty tutkimus osoittaa vertaistuen t\u00e4rkeyden harvinaista sairautta sairastavilla. Terveydenhuollon tulisi oppia arvostamaan vertaistuen merkityst\u00e4 sek\u00e4 tiedollisesti ett\u00e4 emotionaalisella tasolla. Olisi t\u00e4rke\u00e4\u00e4 saada vertaistuen hankkiminen yhdeksi tavoitteeksi hoitosuunnitelmaan. Vertaistuessa t\u00e4rkeit\u00e4 ovat mahdollisimman homogeeniset ryhm\u00e4t. Henkil\u00f6kohtaista tukea tulisi saada vertaistukihenkil\u00f6lt\u00e4 shokkivaiheessa ja my\u00f6hemmin my\u00f6s ryhm\u00e4ss\u00e4, mik\u00e4li se on mahdollista harvinaisissa sairauksissa.", "language": "", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Submitted using Plone Publishing form by Anu Toija (ansutoij) on 2011-10-10 19:06:16.171535. Form: Pro gradu -lomake (1 tekij\u00e4) (https://kirjasto.jyu.fi/julkaisut/julkaisulomakkeet/pro-gradu-lomake-1-tekijae). JyX data:", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Submitted by jyx lomake-julkaisija (jyx-julkaisija@noreply.fi) on 2011-10-10T19:06:20Z\r\nNo. of bitstreams: 2\r\nURN:NBN:fi:jyu-2011101011525.pdf: 1189678 bytes, checksum: 3ad964cb02a30e8320d99311f4fcd179 (MD5)\r\nlicense.html: 5009 bytes, checksum: 08b78bd6c6cdea17cf29cdab941003bc (MD5)", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Made available in DSpace on 2011-10-10T19:06:20Z (GMT). No. of bitstreams: 2\r\nURN:NBN:fi:jyu-2011101011525.pdf: 1189678 bytes, checksum: 3ad964cb02a30e8320d99311f4fcd179 (MD5)\r\nlicense.html: 5009 bytes, checksum: 08b78bd6c6cdea17cf29cdab941003bc (MD5)\r\n Previous issue date: 2011", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.format.extent", "value": "69 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": "vertaistuki", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": 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