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[{"key": "dc.contributor.advisor", "value": "Aunola, Kaisa", "language": "", "element": "contributor", "qualifier": "advisor", "schema": "dc"}, {"key": "dc.contributor.author", "value": "Lind-Ahola, Rosa", "language": "", "element": "contributor", "qualifier": "author", "schema": "dc"}, {"key": "dc.date.accessioned", "value": "2021-02-09T07:24:32Z", "language": null, "element": "date", "qualifier": "accessioned", "schema": "dc"}, {"key": "dc.date.available", "value": "2021-02-09T07:24:32Z", "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/123456789/74050", "language": null, "element": "identifier", "qualifier": "uri", "schema": "dc"}, {"key": "dc.description.abstract", "value": "T\u00e4m\u00e4 tutkimus toteutettiin osana laajempaa Usherin oireyhtym\u00e4\u00e4 sairastavien ja heid\u00e4n perheidens\u00e4 psyykkinen jaksaminen (JaksUs) -tutkimusta. Tutkimuksen tarkoituksena oli selvitt\u00e4\u00e4 millaisia Usherin syndroomaan liittyvi\u00e4 kuormitustekij\u00f6it\u00e4 Usher-lasten \u00e4idit kokevat sek\u00e4 toisaalta millaisia voimavaroja heill\u00e4 on. Koska n\u00e4it\u00e4 teemoja ei ole tutkittu aiemmin Suomessa, eik\u00e4 juuri muuallakaan maailmassa, antaa t\u00e4m\u00e4 tutkimus uutta ja t\u00e4rke\u00e4\u00e4 tietoa Usher-lasten \u00e4itien kuormitus- ja voimavaratekij\u00f6ist\u00e4. Tutkimuksen aineisto koostui 11 \u00e4idin haastattelusta, jotka toteutettiin kev\u00e4\u00e4ll\u00e4 2019. Tutkimuksessa k\u00e4ytettiin sis\u00e4ll\u00f6nanalyysi\u00e4, ja haastatteluista esiin nousseet kuormitustekij\u00e4t ja voimavaratekij\u00e4t luokiteltiin teemoittain aineisto- ja teorial\u00e4ht\u00f6isesti. \nKuormitustekij\u00f6ist\u00e4 muodostui 6 teemaa: 1. Usherin syndrooma -diagnoosiin kohdistuvat kuormitustekij\u00e4t, 2. Arjessa tapahtuneet muutokset, 3. Tutkimuksiin, palveluihin ja terveydenhuoltoon liittyv\u00e4t ongelmat, 4. Vastuu tiedonetsinn\u00e4st\u00e4 ja Usheriin liittyvien asioiden hoitamisesta perheess\u00e4, 5. Yhteisty\u00f6ongelmat kouluhenkil\u00f6kunnan kanssa ja 6. Usher-lapsen arjen kuormitustekij\u00e4t. Voimavaratekij\u00f6ist\u00e4 muodostui 3 teemaa ja n\u00e4m\u00e4 olivat: 1. \u00c4itien henkil\u00f6kohtaiset voimavarat, 2. Perheen sis\u00e4iset voimavarat ja 3. Perheen ulkopuoliset voimavarat.\nT\u00e4m\u00e4 tutkimus osoitti sen, ett\u00e4 Usher-lasten \u00e4idit kokevat paljon erilaisia Usherin syndroomaan liittyvi\u00e4 kuormitustekij\u00f6it\u00e4. N\u00e4it\u00e4 olivat muun muassa Usher-diagnoosin kuormittavat osatekij\u00e4t, huoli Usher-lapsen tulevaisuudesta, sek\u00e4 taistelut erilaisista tutkimuksista ja palveluista. Sek\u00e4 kuormitustekij\u00f6iden runsaus ett\u00e4 n\u00e4iden pitk\u00e4kestoisuus arjessa ovat suuri riski \u00e4itien uupumiselle, ja sit\u00e4 kautta ne ovat riski my\u00f6s koko perheen hyvinvoinnille. N\u00e4in ollen jatkossa kuormitustekij\u00f6iden m\u00e4\u00e4r\u00e4n v\u00e4hent\u00e4miseen pit\u00e4\u00e4 kiinnitt\u00e4\u00e4 huomiota. Lukuisten kuormitustekij\u00f6iden lis\u00e4ksi \u00e4idit raportoivat my\u00f6s monista voimavaratekij\u00f6ist\u00e4. N\u00e4it\u00e4 olivat oma perhe, l\u00e4heisten tarjoama kuuntelutuki, Usherin syndroomaan liittyv\u00e4n avun ja tiedon saaminen terveydenhuollon ty\u00f6ntekij\u00f6ilt\u00e4 ja Suomen Kuurosokeat ry:lt\u00e4, vertaistuki, hy\u00f6ty kuulon apuv\u00e4lineist\u00e4, min\u00e4pystyvyys sek\u00e4 Usherin syndrooman hyv\u00e4ksymiseen liittyv\u00e4 resilienssi. Jatkossa voimavarojen osuutta arjessa olisi t\u00e4rke\u00e4\u00e4 vahvistaa entisest\u00e4\u00e4n, sill\u00e4 n\u00e4in voidaan tutkitusti v\u00e4hent\u00e4\u00e4 vanhemmuuden stressist\u00e4 johtuvaa kuormitusta.", "language": "fi", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.abstract", "value": "This Master`s thesis was carried out as a part of University of Jyv\u00e4skyl\u00e4`s Usherin oireyhtym\u00e4\u00e4 sairastavien ja heid\u00e4n perheidens\u00e4 psyykkinen jaksaminen (JaksUs)-research. The aim of this study was, on the one hand, to find out what kind of Usher syndrome related stress factors the mothers of Usher children experience and, on the other hand, to find out what kind of resources mothers` have to handle daily stresses. Because of lack of previous research on the topic, the present study provides new and important information about the risk- and resource factors of mothers` of Usher children. The research material consists of 11 Usher children's mothers` interviews, which were conducted in the spring 2019. Content analysis was used in this study and reported stress factors and resource factors were thematically classified. \nThe stress factors formed 6 categories: 1. Stress factors related to Usher syndrome diagnosis, 2. Changes in everyday life, 3. Stress factors related to examinations, services and health care, 4. Responsibility for information seeking and for taking care of Usher related matters in the family, 5. Collaboration problems with school staff, 6. Usher child's problems in everyday life. The resource factors formed 3 categories and they were: Mothers` personal resources, family resources and resources outside the family.\nThis study shows that mothers experience many kind of stress factors concerning Usher Syndrome. These were for instance different components which are making Usher-syndrome so stressful to confront, concerns about the Usher child`s future and battle for examinations and services. Great amount of stress factors and also their longevity significantly increases the risk of maternal exhaustion that would further affect the well-being of the whole family. In the future more attention needs to be paid to reducing the number of these stress factors. Fortunately, mothers also reported several resources including family, listening support provided by close people, receiving help and information from health care workers and Suomen Kuurosokeat ry, peer support, perceived benefit of hearing aids, self-efficacy and resilience related to Usher acceptance. In the future it is important to strengthen the share of resources even more, because it is scientifically acknowledged that they decrease parental stress.", "language": "en", "element": "description", "qualifier": "abstract", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Submitted by Paivi Vuorio (paelvuor@jyu.fi) on 2021-02-09T07:24:32Z\nNo. of bitstreams: 0", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.description.provenance", "value": "Made available in DSpace on 2021-02-09T07:24:32Z (GMT). No. of bitstreams: 0\n Previous issue date: 2020", "language": "en", "element": "description", "qualifier": "provenance", "schema": "dc"}, {"key": "dc.format.extent", "value": "56", "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.subject.other", "value": "Usherin syndrooma", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "Usher-lasten \u00e4idit", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "Usher-lapsi", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "kuormitustekij\u00e4", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.subject.other", "value": "voimavaratekij\u00e4", "language": "", "element": "subject", "qualifier": "other", "schema": "dc"}, {"key": "dc.title", "value": "\"Jos joku on harvinaista, niin se ei tarkoita sit\u00e4 etteik\u00f6 se kuitenki jolleki ois todellisuutta\" : Usher-lasten \u00e4itien Usherin syndroomaan liittyv\u00e4t kuormitustekij\u00e4t sek\u00e4 arjessa kannattelevat voimavarat", "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-202102091492", "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", "qualifier": "department", "schema": "dc"}, {"key": "dc.contributor.organization", "value": "Jyv\u00e4skyl\u00e4n yliopisto", "language": "fi", "element": "contributor", "qualifier": "organization", "schema": "dc"}, {"key": "dc.contributor.organization", "value": "University of Jyv\u00e4skyl\u00e4", "language": "en", "element": "contributor", "qualifier": "organization", "schema": "dc"}, {"key": "dc.subject.discipline", "value": "Psykologia", "language": "fi", "element": "subject", "qualifier": "discipline", "schema": "dc"}, {"key": "dc.subject.discipline", "value": "Psychology", "language": "en", "element": "subject", "qualifier": "discipline", "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": null, "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": "202", "language": "", "element": "subject", "qualifier": "oppiainekoodi", "schema": "dc"}, {"key": "dc.subject.yso", "value": "kuormitus", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "\u00e4idit", "language": null, "element": "subject", "qualifier": "yso", "schema": "dc"}, {"key": "dc.subject.yso", "value": "Usherin oireyhtym\u00e4", "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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