Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study.

BACKGROUND: Pediatric advance care planning differs from the adult setting in several aspects, including patients' diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals' perspective. AIM: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning. DESIGN: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed. SETTING/PARTICIPANTS: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/adolescents, from different professions, care settings, and institutions. RESULTS: Perceived problems with pediatric advance care planning relate to professionals' discomfort and uncertainty regarding end-of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor's advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning. CONCLUSION: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers.

Towards Innovative Virtual Learning in Vocational Teacher Education: Narratives as a Form of Meaningful Learning

http://www.eurodl.org/.

Ba in Virtual Communities

Virtual communities – interactive networks in cyberspace seasoned with feelings – are a highly topical research theme. Besides academics, more and more companies ponder upon the nature and implications of the sense of virtual communities. This thesis takes a novel viewpoint on this research and examines virtual communities from virtual ba perspective. Ba is the space – in this case a virtual and a mental one, where knowledge based interaction occurs. The aim of this thesis is to clarify the concept of virtual ba, and the development and appearance of ba in virtual communities. The scientific contribution of this qualitative case study is conceptual clarification and validation of the concept of virtual ba. The empirical part of the thesis examines blogs: Internet-based communication media, using data triangulation (observation, narratives and a thematic interview). The thesis provides insights into the development of virtual ba that has also managerial relevance.

Safety Culture and Maritime Personnel’s Safety Attitudes: Interview Report

”METKU –projektissa” (Merenkulun turvallisuuskulttuurin kehittäminen) tutkitaan kansainvälisen turvallisuusjohtamiskoodin (ISM-koodin) vaikutuksia merenkulun turvallisuuteen ja etsitään kehittämiskohteita merenkulun turvallisuusjohtamisen parantamiseksi. Tämä haastatteluraportti on laadittu METKU –projektin yhteistyössä työpakettien 1 ja 2 kesken. Tähän raporttiin haastateltiin yhteensä 94 merenkulun ammattilaista. Suurimman osan haastateltavista muodostivat aktiiviset merenkulkijat: miehistön jäsenet, päällystö ja alusten päälliköt. Haastattelukohteena oli seitsemän suomalaista varustamoa. Haastatteluissa kerättiin merenkulkijoiden kokemuksia ja mielipiteitä ISM-koodin vaikutuksesta heidän käytännön työhönsä. Suomalaiset merenkulkijat uskovat, että tänä päivänä varustamoiden johtajat ovat hyvin sitoutuneita turvallisuuteen. Myös miehistön asenteet turvallisuuteen ovat ISM-koodin käytön myötä parantuneet. Haasteltavien yhteinen huoli kohdistui jatkuvan parantamisen toimivuuteen. Kaikki haastatellut ryhmät olivat samaa mieltä siitä, että poikkeamien raportointi ei ISMkoodin vaatimuksesta huolimatta toimi kunnolla. ISM-koodin käyttöön otosta on ollut merenkululle selkeää hyötyä. Haastateltavat esittivät hyötyinä parantuneen yhteistyön ja tiedonkulun alusten ja varustamon välillä sekä sen, että merenkulun toiminnan laatu on parantunut. Monet haastateltavat korostivat, että ISM-koodin selkeät turvallisuusvastuut yhtiölle on ollut merkittävä hyöty. Itse ISM-koodiin merenkulkijoilla ei ollut juurikaan huomauttamista. Sen sijaan turvallisuusjohtamisen käytännön toteutuksessa nähtiin parantamisen varaa. ISMkoodin aiheuttamina ongelmina mainittiin mm. lisääntynyt byrokratia ja liian monimutkaiset ja yksityiskohtaiset turvallisuuskäsikirjat. Monet haastateltavat toivovat, että ISM-koodin käytännön soveltamiseen laadittaisiin ohjeita.

Rummet i vårdandets värld

This study is made in the context of basic research within the field ofcaring science. The aim is to make a theoretical and ontological investigation of what the space is in the world of caring. The basic proposition is that the space, as a fundamental dimension, has an impact on how the appreciation of one's mental health and suffering is shaped, and vice versa. The overall purpose is to develop a theoretical model of space from the caring science point of view andalso to offer an ideal concept of space to caring science. Guided by a theoretical horizon (Eriksson 1993, Eriksson 1995, Eriksson 2001) and methodological approach grounded in Gadamer's philosophic and existential hermeneutics a three-stage analysis and interpretation is conducted. The hermeneutic spiral of this investigation starts through a procedure in accordance with Eriksson's model (1997) of concept definition. The goal is to clarify the etymology of the concept as well as semantic differences between synonymous concepts, i.e. to identify the different extents of the concept of `space` (`rum`) in order to bring these closer for an exploration. The second phase is to analyse and interpret a sample of narratives in order to explicate the ontological nature and meaning of the space. The material used here is literary texts. The goal is to clarify the characteristics of the very inside of the space when it is shaped in relation to the human being in encountering suffering. In the third phase an interview study is taken place. The focus of the study is directed towards the phenomenon of space as it is known by a patient in a landscape of psychiatric care, i.e. what the space is in a contextual meaning. Then, a gradual hermeneutic understanding of the space is attempted by using theories from the field of caring science as well as additional theories from other disciplines. Metaphors are used as they are vivid and expressive tools for generating meaning. Different metaphoric space formations depict here a variety of purports that, although not quite the same, share extensive elements. Six metaphorically summarized entities of meaning emerged. The comprehensive form of space is pointed out as the Mobile-Immobile Room. Furthermore, the Standby, the Asylum, the Wall and the Place. In the further dialogue with the texts the understanding has deepened ontologically. The theoretical model ofthe space sums up the vertical, horizontal and the inward extent of deepness inthe movement of mental health. Three entities of ontological meaning have emerged as three significant rooms: the Common Land emerges as the ideal concept of mutual creation in the freedom of doing, being and becoming health. On the interpersonal level it means freedom, which includes sovereignty, choice and dignity of the human being. The Ice World signifies, ultimately, the space as a kind of frozenness of despair which "wallpapers" the person's entire being in the world in the drama of suffering. The Spiritual Home is shaped when the human being has acquired the very core of his/her inner and outer placeness as a kind of "at-homeness" and rootedness. Time is a central element and the inward extent of deepness of this trialectic space. Each of the metaphors is then the human being's unique, although even paradoxical, way of conceiving reality, and mastering spiritual suffering. They condense characteristic structures and patterns of dynamic scenery, which take place within the movement of health. The space encloses a contradictory spatiality constituted through the dynamic field of meaningfulness and meaninglessness. Anyway, it is not through a purging of these contradictions but through bringing them together in a drama of suffering that the space is shaped as ontologically good and meaningful in the world of caring.

Resa i röstens landskap : en narrativ studie av hur lärare blir professionella röstanvändare

The theme of this thesis is the learning process that occurs when teachers become professional voice users. The aim is to explore what it (really) means to become a professional voice user in a teaching profession; thereby developing an understanding of how future education in this field can be arranged so as to both effectively prevent vocal problems and to develop oral didactical competence among teachers. The ambition is to describe, interpret, and understand the learning process through a combination of emic and ethic research perspectives. The theoretical frame of reference reflects the cross disciplinary character of the thesis. Voice problems are common among both student teachers and inservice teachers and adversely affect professional competence, identity and quality of life. Additionally, vocal problems are proven to have a negative impact on pupils´ learning. The individual elements of learning are explored in the light of experiential learning theory and transformative learning theory. The social elements of learning are explored in relation to the theory of situated learning. In addition, theories of teacher professionalisation in terms of competence and identity are outlined. The empirical study has a longitudinal and multi method character. It is anchored in a phenomenological hermeneutical tradition, more specifically in narrative inquiry. The point of departure is the learning experiences of ten student teachers, who attended a ten week long course on voice production as part of their teacher training at Åbo Akademi University, in the autumn of 2002 and the spring of 2003. Four interviews in the form of conversations were conducted with each participant. These were crystallised with a process diary, a Swedish Voice Handicap Index, a voice observation, and a video observation. A fifth interview was conducted with each participant five years post teacher training, in the spring of 2008. Participant observation was also conducted throughout the course. The research materials have been analysed and interpreted narratively using a phenomenological hermeneutical method. The results are presented descriptively as individual narratives, which are reflected in logopedic research materials. Learning is here understood as emergent awareness. This is followed by a meta narrative concerning learning as experiences in the four dimensions body, thought, feeling, and relation. Finally, interpretation is expressed with respect to the theory of relational education. Learning is here understood as a movement in the field between the actual and the possible voice. It is also viewed as fundamentally rooted in inter-human relationships, in moments of presence and coexistence. As a tentative answer to the call for an existential space for learning in order to be a professional voice user, I suggest the concept of a learning refuge as a locus for a learning process built on trust, mutuality and openness.

Written cancer narratives : an ethnomedical study of cancer patients thoughts, emotions and experiences

Lectio praecursoria at the University of Helsinki 15.1.2011.

How (not) to interview children : interviews with young children in sexual abuse investigations in Finland

The present thesis had two main objectives: The first was to assess how child sexual abuse (CSA) interviews in Finland are conducted through analysing the interviewing techniques applied and the language used by the interviewers, as well as to suggest ways to improve interviews if they were found to have deficiencies. The second main aim was to contribute to the growing research corpus concerning CSA interviews, in particular, by addressing how interviewers follow up information provided by the child, by analysing whether child health care professionals would use childadapted language, and by studying the kind of modifications in the verbal behaviour of interviewers and children that were associated with a) repeated interviews, b) a support person’s presence at the interview, and c) the use of anatomically detailed dolls. Two complementary samples of CSA interviews were analysed. The first one was composed of child interviews with 3-12-year-old children (N = 27) that had been considered problematic by lawyers or other involved professionals (Studies I and IV). The second sample consisted of unselected interviews (N = 43) with children aged 3 to 8 years conducted in a number of hospitals in different parts of the country (Studies II and III). Study I: The verbal interaction between interviewer and child was analysed in a sample of interviews that had been considered to be problematic by involved professionals. Results showed that interviewers used inappropriate questioning techniques, relying on option-posing, specific suggestive and unspecific suggestive questions to a significant extent, these comprising around 50% of all interviewer utterances. The proportion of invitations, which the research community recommends interviewers to rely on, was strikingly low. Invitations and directive utterances were associated with an increase in informative responses by the child in terms of response type, number of new details reported, as well as length of response. The opposite was true for option-posing and suggestive utterances. Longer questions by the interviewer (in number of words) often rendered no reply from the child, whereas shorter questions were followed by descriptive answers. Even after the child had provided an informative answer, interviewers failed to follow up the information in an adequate way and instead continued to rely on focused and leading questions. Study II: Due to the possible bias of the sample analysed in Study I, the most important analyses were rerun with the unselected sample and reported separately. Results were quite similar between the two studies, indicating that the problems observed in Study I, with interviewers relying on option-posing and suggestive questions to a significant extent, are likely to be general and not specific for those interviews. Even if suggestive questions were slightly less and invitations slightly more common in this sample than in the previous study, almost half of the interviewer questions were still optionposing or suggestive, and also in this sample, interviewers failed to follow up information by the child in a facilitating manner. Differentiating between judicial and contextual details showed that while facilitators, invitations, and directive utterances elicited more contextual than judicial details, the opposite was true for specific suggestive utterances. These results might be explained by the reluctance of children to describe sexual details related to the abuse events. Alternatively, they may also be due to children describing incorrect sexual details as a result of suggestive interviewing techniques. Study III: This study examined features of the language used by the interviewers. Interviewer utterances included multiple questions, long statements, complicated grammar and concepts, as well as unclear references to persons and situations. More than a fifth of the interviewer utterances were coded as belonging to at least one of these categories. The results suggest that even professionals who are experienced in interacting with children may have difficulties in using a child-sensitive language, adding to the pool of studies showing similar problems to occur in legal hearings with children conducted by lawyers. As children rarely comment on, or even recognise, their lack of comprehension, the use of a language that is too complex can have detrimental consequences for the outcomes of investigative interviews. Interviewers used different approaches to introduce the topic of abuse. While 15% of the children spontaneously addressed the topic of abuse, probably indicating that they felt confident with the interviewer and the situation, in almost 50% of the cases, the interviewer introduced the topic of abuse in a way that can be considered leading. Interviews were characterised by a lack of structure, apparent in frequent rapid switches of topic by the interviewer. This manner was associated with a decrease in the number of new details provided by the children. Study IV: This study analysed possible changes in the interview dynamics associated with repeated interviewing, the presence of a support person (related to the child), and the use of anatomically detailed (AD) dolls. Repeated interviewing, in combination with suggestive questions, has previously been found to seriously contaminate children’s accounts. In the present material, interviewers used significantly more suggestive utterances in the repeated condition, thus endangering the reliability of the children’s reports. Few studies have investigated the effects of a support person’s presence at the interview. The results of the present study showed that interviewers talked more and children provided less information when a support person was present. Supporting some earlier findings regarding the use of AD dolls, the present results showed that using AD dolls was associated with longer interviewer utterances and shorter, less responsive, and less detailed child responses. Interviewers used up to five times more unspecific suggestive utterances when dolls were used, for instance through repeatedly asking the child to show “what really happened” with the dolls. Conclusion: The results indicate that CSA interviews in Finland are not conducted in a manner that follows best practice as defined by the research community and as stated in a number of guidelines. When comparing these questioning strategies with the recommendations, which have been predominant in the field for more than ten years now, it can be concluded that the interviews analysed were conducted in a manner that undermines the possibility to elicit an uncontaminated and accurate narrative from the children. A particularly worrying finding was the fact that interviewers did not follow up relevant information by the children in an adequate way. A number of clinical implications can be drawn from the results, particularly concerning the need for improvement in the quality of CSA interviews. There is convincing research regarding how to improve CSA interviews, notably through training forensic child interviewers to use a structured interviewing protocol, and providing them with continuous supervision and feedback. Allocating appropriate resources to improve the quality of forensic child interviews is a matter of protecting the rights of all persons involved in CSA investigations, in particular those of the children.

Co-created Mobile Narratives

FM Marjo Mäenpään Turun yliopiston Humanistisen tiedekunnan Kulttuurituotannon ja maisemantutkimuksen digitaalisen kulttuurin oppialalle valmistunut väitöskirja Co-created Mobile Narratives tarkastetaan Porin yliopistokeskuksessa 27. huhtikuuta 2013. Marjo Mäenpää tutkii, kuinka ihmiset tarinallistavat elämänsä, kuvittavat ja jakavat kokemuksiaan toisten ihmisten kanssa mobiilin median avulla. Elämänjulkaisemisesta on tullut ihmisten arkista toimintaa. Mäenpää lähestyy jaettuja kännykkävideotarinoita kolmesta eri näkökulmasta. Hän tutkii tarinoiden rakennetta, julkaisemista ja julkaisevia yhteisöjä narratologian, yhteisöjen toiminnan ja mediantutkimuksen valossa. Teoreetikot aina Aristoteleesta klassisen narratologian tutkijoihin ovat esittäneet erilaisia tarinallisuuden kaavoja ja rakenteita, joita on havaittavissa myös yhteisössä tuotetuista videotarinoista. Myöhemmän alan tutkimustradition, mm. kognitiivisen narratologian mukaan ihmiset hahmottavat tarinallisia kokonaisuuksia pienemmistäkin fragmenteista ja vihjeistä. Elämän tarinaa, käännekohtia ja elämyksiä kerrotaan usein – esimerkiksi Facebookissa – yksittäisillä, sattumanvaraisilla kuvilla. Yhteisöllinen tuotanto edellyttää luottamusta. Yhteisö jakaa tarinoita, jotka voivat olla hyvinkin fragmentaarisia, mutta saavat merkityksensä yhteisestä kokemusmaailmasta ja kulttuurista. Julkaiseminen on sattumanvaraista, luovaa toimintaa, jonka lopputulos voi olla ennalta arvaamaton. Kuitenkin julkaiseminen edellyttää jonkinlaista aktiivista toimijaa tai tuottajaa. Rakenteen julkaisemiselle voi antaa tuottaja, moderaattori tai hyvin rakennettu teknologinen julkaisualusta. Monitieteisen väitöstutkimuksen aineisto on peräisin Turun yliopiston, Tampereen teknillisen yliopiston ja Aalto- yliopiston Porin yksiköiden yhteisestä Mobile Social Media -tutkimushankkeesta. Vuosina 2008-2010 hankkeessa suunniteltiin MoViE (Mobile Video Experience) -sovellusta, jonka avulla ihmiset voivat julkaista omia lyhyitä videoitaan ja jakaa niitä toisten käyttäjien kanssa. MoViE-sovelluksen avulla käyttäjät voivat editoida omia ja toisten kuvaamia videoita sekä julkaista kuvallisia tarinoita yhteisöllisistä kokemuksista. MoViE-sovellusta kokeiltiin mm. Pori Jazz -konserteissa. Samasta konsertista taltioitui kännykkävideoille useita näkökulmia, ja testikäyttäjäryhmä koosti useita erilaisia videotarinoita yhteisestä konserttikokemuksestaan. Marjo Mäenpää (1959) työskentelee opetus- ja kulttuuriministeriössä kulttuuriasiainneuvoksena. Hän on toiminut mm. kustantajana, multimedian dramaturgian opettajana Teatterikorkeakoulussa, digitaalisen mediatuotannon professorina Aalto-yliopiston Taiteen ja suunnittelun korkeakoulussa vuosina 2006-2012 sekä Taiteen edistämiskeskuksen väliaikaisena johtajana vuonna 2013.

Negotiating home and belonging. Young Kurds in Finland

This study looks at negotiation of belonging and understandings of home among a generation of young Kurdish adults who were born in Iraq, Iran, and Turkey and who reached adulthood in Finland. The young Kurds taking part in the study belong to the generation of migrants who moved to Finland in their childhood and early teenage years from the region of Kurdistan and elsewhere in the Middle East, then grew to adulthood in Finland. In theoretical terms, the study draws broadly from three approaches: transnationalism, intersectionality, and narrativity. Transnationalism refers to individuals’ cross-border ties and interaction extending beyond nationstates’ borders. Young people of migrant background, it has been suggested, are raised in a transnational space that entails cross-border contacts, ties, and visits to the societies of departure. How identities and feelings of belonging become formed in relation to the transnational space is approached with an intersectional frame, for examination of individuals’ positionings in terms of their intersecting attributes of gender, age/generation, and ethnicity, among others. Focus on the narrative approach allows untangling how individuals make sense of their place in the social world and how they narrate their belonging in terms of various mechanisms of inclusion and exclusion, including institutional arrangements and discursive categorisation schemes. The empirical data for this qualitative study come from 25 semi-structured thematic interviews that were conducted with 23 young Kurdish adults living in Turku and Helsinki between 2009 and 2011. The interviewees were aged between 19 and 28 years at the time of interviewing. Interview themes involved topics such as school and working life, family relations and language-learning, political activism and citizenship, transnational ties and attachments, belonging and identification, and plans for the future and aspirations. Furthermore, data were collected from observations during political demonstrations and meetings, along with cultural get-togethers. The data were analysed via thematic analysis. The findings from the study suggest that young Kurds express a strong sense of ‘Kurdishness’ that is based partially on knowing the Kurdish language and is informed by a sense of cultural continuity in the diaspora setting. Collective Kurdish identity narratives, particularly related to the consciousness of being a marginalised ‘other’ in the context of the Middle East, are resonant in young interviewees’ narrations of ‘Kurdishness’. Thus, a sense of ‘Kurdishness’ is drawn from lived experiences indexed to a particular politico-historical context of the Kurdish diaspora movements but also from the current situation of Kurdish minorities in the Middle East. On the other hand, young Kurds construct a sense of belonging in terms of the discursive constructions of ‘Finnishness’ and ‘otherness’ in the Finnish context. The racialised boundaries of ‘Finnishness’ are echoed in young Kurds’ narrations and position them as the ‘other’ – namely, the ‘immigrant’, ‘refugee’, or ‘foreigner’ – on the basis of embodied signifiers (specifically, their darker complexions). This study also indicates that young Kurds navigate between gendered expectations and norms at home and outside the home environment. They negotiate their positionings through linguistic repertoires – for instance, through mastery of the Finnish language – and by adjusting their behaviour in light of the context. This suggests that young Kurds adopt various forms of agency to display and enact their belonging in a transnational diaspora space. Young Kurds’ narrations display both territorially-bounded and non-territorially-bounded elements with regard to the relationship between identity and locality. ‘Home’ is located in Finland, and the future and aspirations are planned in relation to it. In contrast, the region of Kurdistan is viewed as ‘homeland’ and as the place of origins and roots, where temporary stays and visits are a possibility. The emotional attachments are forged in relation to the country (Finland) and not so much relative to ‘Finnishness’, which the interviewees considered an exclusionary identity category. Furthermore, identification with one’s immediate place of residence (city) or, in some cases, with a religious identity as ‘Muslim’ provides a more flexible venue for identification than does identifying oneself with the (Finnish) nation.