Proefschrift Maastricht. / Lit. opg. - Met samenvatting in het Nederlands.

Proefschrift Rijksuniversiteit Limburg, Maastricht. / Met lit. opg. - Met samenvatting in het Nederlands.

Seeking cancer information is key in coping with the feelings (e.g., fear, uncertainty) and other challenges (e.g., treatment decision-making) confronting individuals diagnosed with cancer. Despite recognition of a variation in why, when, how, and where individuals diagnosed with cancer seek information, few efforts have been made to systematically document patterns in information-seeking. Aim: To explore individuals' patterns of health information-seeking behaviors (HIS B) including the type, amount, and sources ofinforn1ation and the strategies used to process and/or manage cancer information. / La recherche d'information sur Ie cancer est d'une importance determinante pour les personnes atteintes de cette maladie dans Ie contexte OU elles ont gerer des emotions intenses (p. ex. : peur, incertitude) et font face plusieurs defis (p. ex. : processus de decision relatif au traitement). Des variations concernant la recherche d'information par les individus diagnostiques avec un cancer ont ete observees et reconnues notamment en termes des raisons qui motivent la recherche d'information et des moyens utilises pour obtenir l'infomlation desiree. Cependant, a ce jour, peu d'efforts ont ete deployes pour documenter de maniere systematique les differents types de comportements de recherche d'information.

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Abstract The purpose of this study was to describe perceptions and explain background factors relating to the clinical learning environment and mentoring of culturally and linguistically diverse nursing students. The study included two phases: instrument development and a cross-sectional study. The instrument development phase consisted of a conceptualization process, which included two systematic reviews with thematic synthesis; generation of items for two new instruments, Cultural and Linguistic Diversity scale and Cultural and Linguistic Diversity in Mentoring scale, and psychometric testing of these newly developed scales. The cross-sectional phase was completed by collecting data from: (a) students (n = 329) studying in English-language nursing degree programmes from eight Finnish universities of applied sciences during autumn 2015 and spring 2016; and (b) mentors (n = 323) of culturally and linguistically diverse students from five Finnish university hospitals during spring 2016. In addition to the two newly developed instruments, two commonly used instruments Clinical Learning Environment, Supervision and Nurse Teacher scale and Mentors’ Competence Instrument were used for the main data collection. The data was analyzed using descriptive statistics, a nonparametric test and a binary logistic regression analysis. The psychometric properties of the instruments had good validity and reliability. Students’ perceptions on the level of their clinical learning environment and mentoring were lower than their mentors’ perceptions of their own mentoring competence. The level of language was the most common factor relating to the outcomes of culturally and linguistically diverse students’ clinical learning environment and mentoring. Future studies on culturally and linguistically diverse nursing students in the clinical environment should have a marked emphasis on improving proficiency in the native language, which should be implemented in the organizational structure of the clinical placements. This should include providing additional education for clinical mentors to enhance their mentoring competence with culturally and linguistically diverse students. / Tiivistelmä Tämän tutkimuksen tarkoituksena oli kuvata ja selittää eri kulttuureista ja kielellisistä taustoista tulevien hoitotyön opiskelijoiden kliinistä oppimisympäristöä ja ohjausta. Tutkimuksessa oli kaksi vaihetta: mittarin kehittäminen ja poikkileikkaustutkimus. Mittarin kehittämiseksi ilmiö käsitteellistettiin, mikä toteutettiin kahtena systemaattisena katsauksena. Katsausaineistot analysoitiin temaattisella synteesillä. Tämän jälkeen muodostettiin mittarit operationalisoimalla käsitteet väittämiksi. Mittareita kehitettiin kaksi: Kulttuurinen ja kielellinen monimuotoisuus- mittari sekä Kulttuurinen ja kielellinen monimuotoisuus opiskelijaohjauksessa -mittari. Mittareiden kehittämisvaiheessa niiden psykometriset ominaisuudet testattiin. Poikkileikkaustutkimus toteutettiin keräämällä kyselyaineisto (a) opiskelijoilta, jotka opiskelivat englannin kielellä opetettavissa sairaanhoidon tutkinto-ohjelmissa kahdeksassa suomalaisessa ammattikorkeakoulussa syksyn 2015 ja kevään 2016 aikana (n = 329); sekä (b) eri kulttuureista tulevien opiskelijoiden ohjaajilta viidestä suomalaisesta yliopistosairaalasta kevään 2016 aikana (n = 323). Aineistot kerättiin ensimmäisessä vaiheessa kehitetyillä mittareilla sekä kahdella yleisessä käytössä olevalla mittarilla, Terveysalan koulutukseen liittyvän harjoittelun ohjauksen laatu -mittarilla sekä Opiskelijanohjausosaaminen -mittarilla. Aineisto analysoitiin käyttämällä kuvailevaa tilastoanalyysiä, ei-parametrisiä testejä ja binääristä logistista regressioanalyysiä. Tutkimuksessa kehitettyjen mittareiden psykometriset ominaisuudet olivat hyvät. Opiskelijoiden ohjaajat arvioivat oman osaamisensa korkeammalle kuin opiskelijat. Opiskelijat arvioivat sekä heidän kliinisen oppimisympäristönsä että ohjauksensa tason ohjaajien arvioita alhaisemmaksi. Kielitaito oli yleisin tekijä, joka vaikutti opiskelijoiden näkemyksiin kliinisestä oppimisympäristöstä ja ohjauksesta. Englannin kielellä opetettavissa tutkinto-ohjelmissa tulisi painottaa opiskelijoiden riittävää paikallisen kielen kielitaitoa. Tämän lisäksi kliinisen harjoittelun ohjaajien tulisi saada koulutusta eri kulttuurillisista taustoista tulevien opiskelijoiden ohjaukseen.

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Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness. Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography. Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives’ encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV). Conclusions: Relatives’ lives are intertwined with the life of their severely mentally ill next of kin. Relatives’ overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives’ needs, and support must be adapted to the individual relative. / Hensikt: Avhandlingens overordnete hensikt var å belyse erfaringer med å være pårørende til personer med alvorlig psykisk lidelse, og deres behov for støtte fra helsevesenet. Videre å belyse støtte fra sykepleiere til pårørende til personer med alvorlig psykisk lidelse. Metode: Mixed methods design ble benyttet. I studie I ble data samlet med spørreskjema besvart av 226 pårørende, og analysert med statistikk. I studie II ble data samlet ved hjelp av intervju med et strategisk utvalg av 18 pårørende, analysert med fenomenografi. I studie III ble data samlet gjennom åpne spørsmål i et spørreskjema (I), besvart av 216 pårørende og analysert med kvalitativ innholdsanalyse. I studie IV ble data samlet ved hjelp av fokusgruppeintervju med 4 grupper sykepleiere fra psykisk helsevern, analysert med fenomenografi. Hovedfunn: Pårørende opplevde at deres liv var sammenvevd med livet til den som hadde en alvorlig psykisk lidelse. De pårørende opplevde byrde og dårlig helse, og det var sammenheng mellom byrde og helse (I). De pårørende måtte balansere en rekke hensyn, gjøre valg på vegne av andre og seg selv, og samtidig kjempe med motstridende følelser og motstridende tanker (II). Pårørendes erfaringer med møter med helsepersonell i psykisk helsevern var hovedsakelig negative, men noen hadde positive opplevelser. De strevde for å bli involvert i behandlingen for familiemedlemmet med den alvorlige psykiske lidelsen sin del, de ønsket å bli inkludert og motta støtte for egen del, men følte seg overlatt med strevsomt ansvar som de ikke kunne unnslippe (III). Sykepleierne anså at deres ansvar først og fremst var overfor pasienten, og å skape en allianse med vedkommende. Sykepleierne opplevde ofte at de måtte ekskludere pårørende, men var noen ganger i stand til å støtte dem (IV). Konklusjoner: Pårørendes liv er sammenvevd med livet til den som har en alvorlig psykisk lidelse. Pårørendes krevende livssituasjon innebærer at psykisk helsevern må involvere dem for den som har den alvorlige psykiske lidelsen, samt inkludere pårørende for deres egen del. De har behov for praktisk og emosjonell støtte. Retningslinjer må på plass for å ivareta pårørendes behov, og støtten må tilpasses den enkelte pårørende