Den talande bokens poetik : en studie med fokus på olika unga vuxnas reception av tre fiktiva texter inlästa på band

The purpose of the research project The poetics of the talking book is to contribute to the knowledge about patterns of understanding in young adults’ reception of fiction, which they listened to through audio books. The problem explored was: How do different groups of listeners receive fictive text presented as a talking book with variations regarding use of voice, engagement and sound effects? The problem formulation rendered four specific research questions: 1. What patterns can be identified in the listeners’ answers regarding story structure and cognitive content in a comparative perspective comprising different reading styles in the taped versions of the text? 2. What patterns of understanding in interpretative reading can be identified in different listeners? 3. Which thoughts do the listeners have about what the talking book should sound like? 4. What affordances for young adults with the functional disability of mild mental retardation can be made visible through guided literature conversations? The theoretical frame of reference was formed by text–reader-oriented literary theory, psychological schema theory, and research regarding voice quality and communication. The project was carried out in two steps. The first phase was to produce the audio books with two variations of reading practice of three short stories with an existential theme in each text. The second step comprised interviewing of 32 young adults (a special group with a reading handicap in form of mild mental retardation, and a reference group with no handicap). The interviews formed as literary conversation were carried out three times during one year. The phenomenological-hermeneutic approach focused on the life worlds of the participants as meaning seeking beings. The analysis was carried out using method triangulation, mainly using phenomenological meaning concentration. The double hermeneutics in use when interpreting the interpretations of the participants revealed a capacity for aesthetic reading of fiction in the special group as well as in the reference group. The aesthetic qualities were found sufficient in all variations of reading by the professional readers of the audio book they listened to. The young adults also could describe how they wanted the audio book to sound: just as if you were reading yourself. A model describing the analytical steps and concepts in use was a result that can serve as an outline of a poetics for the talking book. Unexpected research results were how important the guided literary conversation turned out to be in order to realise the affordances given by the texts regarding exploration of existential themes in the young adults’ life worlds. Thus the result of the research project can be positioned as a piece of emancipatory research stressing the importance of including this group of young adults in the society’s conversation about culture and meaning.

Cognitive Development of Very Low Birth Weight Children from Infancy to Pre-school Age

The survival of preterm born infants has increased but the prevalence of long-term morbidities has still remained high. Preterm born children are at an increased risk for various developmental impairments including both severe neurological deficits as well as deficits in cognitive development. According to the literature the developmental outcome perspective differs between countries, centers, and eras. Definitions of preterm infant vary between studies, and the follow-up has been carried out with diverse methods making the comparison less reliable. It is essential to offer parents upto-date information about the outcome of preterm infants born in the same area. A centralized follow-up of children at risk makes it possible to monitor the consequences of changes in the treatment practices of hospitals on developmental outcome. This thesis is part of a larger regional, prospective multidisciplinary follow-up project entitled “Development and Functioning of Very Low Birth Weight Infants from Infancy to School Age” (PIeniPAinoisten RIskilasten käyttäytyminen ja toimintakyky imeväisiästä kouluikään, PIPARI). The thesis consists of four original studies that present data of very low birth weight (VLBW) infants born between 2001 and 2006, who are followed up from the neonatal period until the age of five years. The main outcome measure was cognitive development and secondary outcomes were significant neurological deficits (cerebral palsy, CP, deafness, and blindness). In Study I, the early crying and fussing behavior of preterm infants was studied using parental diaries, and the relation of crying behavior and cognitive and motor development at the age of two years was assessed. In Study II, the developmental outcome (cognitive, CP, deafness, and blindness) at the age of two years was studied in relation to demographic, antenatal, neonatal, and brain imaging data. Development was studied in relationship to a full-term born control group born in the same hospital. In Study III, the stability of cognitive development was studied in VLBW and full-term groups by comparing the outcomes at the ages of two and five years. Finally, in Study IV the precursors of reading skills (phonological processing, rapid automatized naming, and letter knowledge) were assessed for VLBW and full-term children at the age of five years. Pre-reading skills were studied in relation to demographic, antenatal, neonatal, and brain imaging data. The main findings of the thesis were that VLBW infants who fussed or cried more in the infancy were not at greater risk for problems in their cognitive development. However, crying was associated with poorer motor development. The developmental outcome of the present population was better that has been reported earlier and this improvement covered also cognitive development. However, the difference to fullterm born peers was still significant. Major brain pathology and intestinal perforation were independent significant risk factors for adverse outcome, also when several individual risk factors were controlled for. Cognitive development at the age of two years was strongly related with development at the age of five years, stressing the importance of the early assessment, and the possibility for early interventions. Finally, VLBW children had poorer pre-reading skills compared with their full-term born peers, but the IQ was an important mediator even when children with mental retardation were excluded from the analysis. The findings suggest that counseling parents about the developmental perspectives of their preterm infant should be based on data covering the same birth hospital. Neonatal brain imaging data and neonatal morbidity are important predictors for developmental outcome. The findings of the present study stress the importance of both short-term (two years) and long-term (five years) follow-ups for the individual, and for improving the quality of care.

Henkilöstöraportointi strategisen henkilöstöjohtamisen tukena - Case Eteva kuntayhtymä

Organisaatiot kohtaavat jatkuvasti uusia ja vaativia haasteita. Organisaatiot tarvit-sevat henkilöstön asiantuntemusta ja osaamista, jotta voisivat menestyä kaiken aikaa kovenevassa kilpailutilanteessa. Henkilöstön osaaminen, tiedot ja taidot on tunnistettu organisaation tärkeimmäksi voimavaraksi. Tämän tutkimuksen tavoit-teena oli selvittää, millaista tietoa henkilöstä organisaatiossa johtamis- ja esimies-työtä tekevät tarvitsevat strategisen henkilöstöjohtamisen tueksi. Tutkimus suoritettiin tapaustutkimuksena kehitysvammapalveluja tuottavassa or-ganisaatiossa. Empiirinen aineisto kerättiin ja analysoitiin määrällisin menetelmin kyselytutkimuksena. Analysoinnissa käytettiin lisäksi sisällön analyysia. Tutki-muskysely kohdennettiin kohdeorganisaatiossa johtamis- ja esimiestyötä tekevil-le. Kohdeorganisaation johtamis- ja esimiestyötä tekevät tarvitsevat strategisen hen-kilöstöjohtamisen tueksi monipuolista laadullista ja määrällistä tietoa henkilöstös-tä ja taloudesta sekä palautetta oman esimiestyön laadusta. Tieto henkilöstön työhyvinvoinnista ja työtyytyväisyydestä koettiin tärkeäksi. Tuotetut tiedot tulisi olla saatavissa yhdestä paikasta. Esimiehet tarvitsevat myös osaamisen vahvistamista tuotetun tiedon tulkintaan ja käsittelyyn.

Fragiili X -oireyhtymän molekyyligenetiikka ja diagnostiikka. Veritäpläpohjaisen fragiili X -testauksen pystyttäminen

Fragiili X (frax) -oireyhtymä on yleisin kehitysvammaisuuden perinnöllinen syy. Oireyhtymä periytyy X-kromosomissa, ja sen aiheuttaa sytosiini-guaniini-guaniini-emäskolmikon (CGG) monistuminen X-kromosomin Fragile X mental retardation 1 (FMR1) -geenin promoottorialueella. FMR1-alleelit voidaan luokitella (CGG)n-toistojen määrän mukaan neljään ryhmään: normaali (5–44), harmaa alue (45¬¬¬–54), epästabiili esimutaatio (55–200) tai täysmutaatio (yli 200). Esimutaatiotapauksissa toistojakso voi laajentua täysmutaatioksi jo yhden sukupolven aikana. Esimutaation kantajilla on havaittu monenlaisia oireita. Esimerkiksi osalla kantajanaisista on munarauhasen toiminnanhäiriöitä ja erityisesti miehillä on riski sairastua neurologiseen rappeumasairauteen. Täysmutaatiotapauksessa FMR1-promoottorialue metyloituu epänormaalisti ja geeni inaktivoituu. Täysmutaatiota kantavilla miehillä on aina frax-oireyhtymä, kun taas naisilla toisen terveen X-kromosomin suojavaikutus yleensä lieventää oireita sekä täys- että esimutaatiotapauksissa. Oireyhtymän yleisyyden, laajan oirekirjon ja lääkekehityksen edistymisen takia kiinnostus vastasyntyneiden ja kantajien seulontaa kohtaan on kasvanut. Tutkielman kokeellisessa osassa tavoitteena oli pystyttää veritäpläpohjainen automatisoitu DNA-eristysmenetelmä, joka soveltuu frax-oireyhtymän ja sen kantajien testaukseen PerkinElmerin FragilEaseTM-PCR-määrityksen kanssa. Kokonaisuudessaan testaus koostui DNA-eristyksestä, FragilEaseTM-PCR:stä, PCR-tuotteen puhdistuksesta ja monistustuotteiden havainnoinnista kapillaarigeeli-elektroforeesilla. Jokaista vaihetta optimoitiin veritäplätestaukseen sopivaksi. Frax-testaus todistettiin toimivaksi sekä aikuisten että vastasyntyneiden veritäplillä. Halkaisijaltaan 3,2 mm veritäplistä eristettyjen DNA-näytteiden epäpuhtauksista ja alhaisista pitoisuuksista huolimatta FragilEaseTM-PCR:ssä onnistuttiin monistamaan (CGG)n-alueet pienentämällä eristysnäytteiden reaktiotilavuutta ja nostamalla PCR-syklimäärää. Pisin testattu monistusalue oli 200 toistojaksoa. Lisäksi muokkaamalla DNA-eristysvaihetta ja muuttamalla PCR-tuotteen puhdistusmenetelmää onnistuttiin nostamaan lopullista saantoa. Veritäpläpohjaisen frax-testauksen osoitettiin soveltuvan niin vastasyntyneiden kuin kantajien seulontaan.

Expectations, frames and practices of genetic counselling in different contexts of genetic testing

Genetic counselling is a process in which the counsellee receives information and support concerning a genetic disease. This study examines the genetic counselling attached to genetic testing. Since genetic information is increasing alongside new testing technologies and the situations faced at the genetic clinics will therefore be more diverse, it is essential to assess what the expectations directed at genetic counselling are. It is also important to compare how they face the current counselling practices. In this study, the expectations, frames and practices of genetic counselling in different contexts of genetic testing were examined from three different perspectives: First, international guidelines covering genetic counselling were analysed to summarise what is expected from genetic counselling and to study how genetic information is framed. Second, national experts in European countries were asked about the regulations and practices of genetic counselling in their country. Finally, ten counsellees who had visited a genetic clinic were interviewed to analyse their expectations and experiences. The counsellees’ perspective was also approached through the background review of the previous studies on counsellees’ experiences. On the basis of the study, there are basic elements that are expected to be covered in genetic counselling from all perspectives. However, the views concerning bioethics, genetic exceptionalism and psychosocial aspects vary depending on the perspective and on the individual situation. Since there are sometimes more differences than similarities between genetic tests, no universal recommendations for counselling can be applied. The practices of genetic counselling should be defined situationally, emphasising the individual needs over the genes.