Yhteisön ja yhteiskunnan ehdoilla : Seurakuntien ja kuntien yhteistyö vuorovaikutuksen näkökulmasta

In this research, the cooperation between Finnish municipalities and Evangelical Lutheran parishes is studied from the standpoint of institutional interaction. The most essential theoretical background for the study is the differentiation thesis of the secularization theory. Cooperation from the viewpoints of both organizations is examined using the functional approach. Furthermore, the market theory and other theories are applied in order to place the studied phenomenon in the wider context of the theories of the sociology of religion. Sacralization in modern society and its relationship with the differentiation thesis of the secularization theory are in the theoretical foci. In addition, along with a descriptive examination of cooperation, the normative sides of the phenomenon are discussed. The survey was conducted among all municipalities and parishes in continental Finland. The questionnaires were sent to all municipal managers of youth work and afternoon activities and to all managers of child, youth and social work in the parishes. The response rate for the municipalities was 73.9 % and for the parishes 69.5 %. In addition, two qualitative data were utilized. The aim of the study is to scrutinize what kind of limitations of differentiation can be caused by the interaction between the secular and the religious. In order to solve the problem, an empirical study of sacralization in the modern context is required. For this purpose, the survey was carried out to determine the effects of the religious on the secular and the impact of the secular on the religious. In the articles of the study the following relationships are discussed: the positions of municipalities and parishes in relation to the state and civil society; cooperation in relation to differentiation; sacralization in relation to the differentiation thesis and cooperation in relation to pluralism. The results of the study highlighted the significance of the cooperation, which was contrary to the secularization theory connected to religious sacralization. The acceptance of the appearance of religion in cooperation and parishes support for municipal function was high in municipalities. Religious cooperation was more active than secular cooperation within all fields. This was also true between fields: religiously orientated child work was more active than the societally orientated social work of the church. Religious cooperation in modern fields of activity underlined sacralization. However, the acceptance of sacralization was weaker in cities than rural areas. Positive relationships between the welfare function of municipalities and the religious function of parishes emphasized the incompleteness of differentiation and the importance of sacralization. The relationship of the function of municipalities with parishes was neither negative nor neutral. Thus, in the most active fields, that is, child work and the traditional social work of the church, the orientation of parishes in cooperation supported the functions of both organizations. In more passive fields, that is, youth work and the societal social work of the church, parishes were orientated towards supporting the municipal function. The orientation of municipalities to religion underlined the perception that religious function is necessary for cooperation. However, the official character of cooperation supported accommodation to the requirements of societal pluralism. According to the results, sacralization can be effective also at the institutional level. The religious effect of voluntary cooperation means that religious sacralization can also readjust to modern society. At the same time, the results of the study stressed the importance of institutional autonomy. Thus, the public sector has a central role in successful cooperation. The conditions of cooperation are weakened if there is no official support of cooperation or adjustment to the individual rights of modern society. The results called into question the one-directional assumptions in the secularization paradigm and the modernization theory in the background. In these assumptions, religion that represents the traditional is seen to give way to the modern, especially at the institutional level. Lack of an interactional view was identified as a central weakness of the secularization paradigm. In the theoretical approach created in the study, an interactional view between religious and secular institutions was made possible by limiting the core of the differentiation thesis to autonomy. The counter forces of differentiation are despecialization and sacralization. These changes in the secularization theory bring about new interactivity on the institutional level. In addition to the interactional approach, that is, the secularization and sacralization theory created as a synthesis of the study, interaction between the religious and the secular is discussed from the standpoint of multiple modernities. The spiritual welfare role of religion is seen as a potential supporter of secular institutions. Religion is set theoretically amongst other ideologies and agents, which can create communal bonds in modern society. Key words: cooperation, municipalities, parishes, sacralization, secularization, modernization, multiple modernities, differentiation, interaction, democracy, secularism, pluralism, civil society

Ammatti, ihminen ja maailmankuva murroksessa : Tutkimus yliopistokirjastoista ja kirjastonhoitajista tietoyhteiskuntakaudella 1970-2005

PROFESSION, PERSON AND WORLDVIEW AT A TURNING POINT A Study of University Libraries and Library Staff in the Information Age 1970 - 2005 The incongruity between commonly held ideas of libraries and librarians and the changes that have occurred in libraries since 2000 provided the impulse for this work. The object is to find out if the changes of the last few decades have penetrated to a deeper level, that is, if they have caused changes in the values and world views of library staff and management. The study focuses on Finnish university libraries and the people who work in them. The theoretical framework is provided by the concepts of world view (values, the concept of time, man and self, the experience of the supernatural and the holy, community and leadership). The viewpoint, framework and methods of the study place it in the area of Comparative Religion by applying the world view framework. The time frame is the information age, which has deeply affected Finnish society and scholarly communication from 1970 to 2005. The source material of the study comprises 30 life stories; somewhat more than half of the stories come from the University of Helsinki, and the rest from the other eight universities. Written sources include library journals, planning documents and historical accounts of libraries. The experiences and research diaries of the research worker are also used as source material. The world view questions are discussed on different levels: 1) recognition of the differences and similarities in the values of the library sphere and the university sphere, 2) examination of the world view elements, community and leadership based on the life stories, and 3) the three phases of the effects of information technology on the university libraries and those who work in them. In comparing the values of the library sphere and the university sphere, the appreciation of creative work and culture as well as the founding principles of science and research are jointly held values. The main difference between the values in the university and library spheres concerns competition and service. Competition is part of the university as an institution of research work. The core value of the library sphere is service, which creates the essential ethos of library work. The ethical principles of the library sphere also include the values of democracy and equality as well as the value of intellectual freedom. There is also a difference between an essential value in the university sphere, the value of autonomy and academic freedom on the one hand, and the global value of the library sphere - organizing operations in a practical and efficient way on the other hand. Implementing this value can also create tension between the research community and the library. Based on the life stories, similarities can be found in the values of the library staff members. The value of service seems to be of primary importance for all who are committed to library work and who find it interesting and rewarding. The service role of the library staff can be extended from information services provider to include the roles of teacher, listener and even therapist, all needed in a competitive research community. The values of democracy and equality also emerge fairly strongly. The information age development has progressed in three phases in the libraries from the 1960s onward. In the third phase beginning in the mid 1990s, the increased usage of electronic resources has set fundamental changes in motion. The changes have affected basic values and the concept of time as well as the hierarchies and valuations within the library community. In addition to and as a replacement for the library possessing a local identity and operational model, a networked, global library is emerging. The changes have brought tension both to the library communities and to the relationship between the university community and the library. Future orientation can be said to be the key concept for change; it affects where the ideals and models for operations are taken from. Future orientation manifests itself as changes in metaphors, changes in the model of a good librarian and as communal valuations. Tension between the libraries and research communities can arise if the research community pictures the library primarily as a traditional library building with a local identity, whereas the 21st century library staff and directors are affected by future orientation and membership in a networked library sphere, working proactively to develop their libraries.

Towards a Critique of the Concept of the Right to Self-Determination in Africa : A Conceptual Examination and the Cases of Western Sahara, Southern Sudan and Eritrea

This thesis examines the right to self-determination which is a norm used for numerous purposes by multiple actors in the field of international relations, with relatively little clarity or agreement on the actual and potential meaning of the right. In international practice, however, the main focus in applying the right has been in the context of decolonization as set by the United Nations in its early decades. Thus, in Africa the right to self-determination has traditionally implied that the colonial territories, and particularly the populations within these territories, were to constitute the people who were entitled to the right. That is, self-determination by decolonization provided a framework for the construction of independent nation-states in Africa whilst other dimensions of the right remained largely or totally neglected. With the objective of assessing the scope, content, developments and interpretations of the right to self-determination in Africa, particularly with regard to the relevance of the right today, the thesis proceeds on two fundamental hypotheses. The first is that Mervyn Frost s theory of settled norms, among which he lists the right to self-determination, assumes too much. Even if the right to self-determination is a human right belonging to all peoples stipulated, inter alia, in the first Article of the 1966 International Human Rights Covenants, it is a highly politicized and context-bound right instead of being settled and observed in a way that its denial would need special justification. Still, the suggested inconsistency or non-compliance with the norm of self-determination is not intended to prove the uselessness or inappropriateness of the norm, but, on the contrary, to invite and encourage debate on the potential use and coverage of the right to self-determination. The second hypothesis is that within the concept of self-determination there are two normative dimensions. One is to do with the idea and practice of statehood, the nation and collectivity that may decide to conduct itself as an independent state. The other one is to do with self-determination as a human right, as a normative condition, to be enjoyed by people and peoples within states that supersedes state authority. These external and internal dimensions need to be seen as complementary and co-terminous, not as mutually exclusive alternatives. The thesis proceeds on the assumption that the internal dimension of the right, with human rights and democracy at its core, has not been considered as important as the external. In turn, this unbalanced and selective interpretation has managed to put the true normative purpose of the right making the world better and bringing more just polity models into a somewhat peculiar light. The right to self-determination in the African context is assessed through case studies of Western Sahara, Southern Sudan and Eritrea. The study asks what these cases say about the right to self-determination in Africa and what their lessons learnt could contribute to the understanding and relevance of the right in today s Africa. The study demonstrates that even in the context of decolonization, the application of the right to self-determination has been far from the consistent approach supposedly followed by the international community: in many respects similar colonial histories have easily led to rather different destinies. While Eritrea secured internationally recognized right to self-determination in the form of retroactive independence in 1993, international recognition of distinct Western Sahara and Southern Sudan entities is contingent on complex and problematic conditions being satisfied. Overall, it is a considerable challenge for international legality to meet empirical political reality in a meaningful way, so that the universal values attached to the norm of self-determination are not overlooked or compromised but rather reinforced in the process of implementing the right. Consequently, this thesis seeks a more comprehensive understanding of the right to self-determination with particular reference to post-colonial Africa and with an emphasis on the internal, human rights and democracy dimensions of the norm. It is considered that the right to self-determination cannot be perceived only as an inter-state issue as it is also very much an intra-state issue, including the possibility of different sub-state arrangements exercised under the right, for example, in the form of autonomy. At the same time, the option of independent statehood achieved through secession remains a mode of exercising and part of the right to self-determination. But in whatever form or way applied, the right to self-determination, as a normative instrument, should constitute and work as a norm that comprehensively brings more added value in terms of the objectives of human rights and democracy. From a normative perspective, a peoples right should not be allowed to transform and convert itself into a right of states. Finally, in light of the case studies of Western Sahara, Southern Sudan and Eritrea, the thesis suggests that our understanding of the right to self-determination should now reach beyond the post-colonial context in Africa. It appears that both the questions and answers to the most pertinent issues of self-determination in the cases studied must be increasingly sought within the postcolonial African state rather than solely in colonial history. In this vein, the right to self-determination can be seen not only as a tool for creating states but also as a way to transform the state itself from within. Any such genuinely post-colonial approach may imply a judicious reconsideration, adaptation or up-dating of the right and our understanding of it in order to render it meaningful in Africa today.

The Politics of Pulp Investment and the Brazilian Landless Movement (MST)

The Politics of Pulp Investment and the Brazilian Landless Movement (MST) The paper industry has been moving more heavily to the global South at the beginning of the 21st century. In a number of cases the rural populations of the global South have engaged in increasingly important resistance in their scuffle with the large-scale tree plantation-relying pulp investment model. The resistance had generally not yet managed to slow down Southern industrial tree plantation expansion until 2004. After all, even the MST, perhaps the strongest of the Southern movements, has limited power in comparison to the corporations pushing for plantation expansion. This thesis shows how, even against these odds, depending on the mechanisms of contention and case-specific conflict dynamics, in some cases the movements have managed to slow and even reverse plantation expansion. The thesis is based on extensive field research in the Brazilian countryside. It outlines a new theory of contentious agency promotion, emphasizing its importance in the shaping of corporate resource exploitation. The thesis includes a Qualitative Comparative Analysis of resistance influence on the economic outcomes of all (14) Brazilian large-scale pulp projects between 2004-2008. The central hypothesis of the thesis is that corporate resource exploitation can be slowed down more effectively and likely when the resistance is based on contentious agency. Contentious agency is created by the concatenation of five mutually supporting mechanisms of contention: organizing and politicizing a social movement; heterodox framing of pulp projects; protesting; networking; and embedding whilst maintaining autonomy. The findings suggest that contentious agency can slow or even reverse the expansion of industrial plantations, whereas when contentious agency promotion was inactive, fast or even unchecked plantation expansion was always the outcome. The rule applied to all the assessed 14 pulp conflict cases. The hypothesis gained strong support even in situations where corporate agency promotion was simultaneously active. In previous studies on social movements, there has been a lack of contributions that help us understand the causal mechanisms of contention influencing economic outcomes. The thesis answers to the call by merging a Polanyian analysis of the political economy with the Dynamics of Contention research program and making a case for the impact of contentious agency on capital accumulation. The research concludes that an efficient social movement can utilize mechanisms of contention to promote the potential of activism among its members and influence investment outcomes. Protesting, for example via pioneering land occupations, seemed to be particularly important. Until now, there has been no comprehensive theory on when and how contentious agency can slow down or reverse the expansion of corporate resource exploitation. The original contribution of this research is to provide such a theory, and utilize it to offer an extensive explanation on the conflicts over pulp investment in Brazil, the globalization of the paper industry, and slowing of industrial plantation expansion in the global South.

Democratic Legitimacy and the Politics of Rights : A comparative analysis of the conceptual relationship between democracy and rights in contemporary political theories

Democratic Legitimacy and the Politics of Rights is a research in normative political theory, based on comparative analysis of contemporary democratic theories, classified roughly as conventional liberal, deliberative democratic and radical democratic. Its focus is on the conceptual relationship between alternative sources of democratic legitimacy: democratic inclusion and liberal rights. The relationship between rights and democracy is studied through the following questions: are rights to be seen as external constraints to democracy or as objects of democratic decision making processes? Are individual rights threatened by public participation in politics; do constitutionally protected rights limit the inclusiveness of democratic processes? Are liberal values such as individuality, autonomy and liberty; and democratic values such as equality, inclusion and popular sovereignty mutually conflictual or supportive? Analyzing feminist critique of liberal discourse, the dissertation also raises the question about Enlightenment ideals in current political debates: are the universal norms of liberal democracy inherently dependent on the rationalist grand narratives of modernity and incompatible with the ideal of diversity? Part I of the thesis introduces the sources of democratic legitimacy as presented in the alternative democratic models. Part II analyses how the relationship between rights and democracy is theorized in them. Part III contains arguments by feminists and radical democrats against the tenets of universalist liberal democratic models and responds to that critique by partly endorsing, partly rejecting it. The central argument promoted in the thesis is that while the deconstruction of modern rationalism indicates that rights are political constructions as opposed to externally given moral constraints to politics, this insight does not delegitimize the politics of universal rights as an inherent part of democratic institutions. The research indicates that democracy and universal individual rights are mutually interdependent rather than oppositional; and that democracy is more dependent on an unconditional protection of universal individual rights when it is conceived as inclusive, participatory and plural; as opposed to robust majoritarian rule. The central concepts are: liberalism, democracy, legitimacy, deliberation, inclusion, equality, diversity, conflict, public sphere, rights, individualism, universalism and contextuality. The authors discussed are e.g. John Rawls, Jürgen Habermas, Seyla Benhabib, Iris Young, Chantal Mouffe and Stephen Holmes. The research focuses on contemporary political theory, but the more classical work of John S. Mill, Benjamin Constant, Isaiah Berlin and Hannah Arendt is also included.

Essays in Philosophical Moral Psychology

The dissertation consists of four essays and a comprehensive introduction that discusses the topics, methods, and most prominent theories of philosophical moral psychology. I distinguish three main questions: What are the essential features of moral thinking? What are the psychological conditions of moral responsibility? And finally, what are the consequences of empirical facts about human nature to normative ethics? Each of the three last articles focuses on one of these issues. The first essay and part of the introduction are dedicated to methodological questions, in particular the relationship between empirical (social) psychology and philosophy. I reject recent attempts to understand the nature of morality on the basis of empirical research. One characteristic feature of moral thinking is its practical clout: if we regard an action as morally wrong, we either refrain from doing it even against our desires and interests, or else feel shame or guilt. Moral views seem to have a conceptual connection to motivation and emotions – roughly speaking, we can’t conceive of someone genuinely disapproving an action, but nonetheless doing it without any inner motivational conflict or regret. This conceptual thesis in moral psychology is called (judgment) internalism. It implies, among other things, that psychopaths cannot make moral judgments to the extent that they are incapable of corresponding motivation and emotion, even if they might say largely the words we would expect. Is internalism true? Recently, there has been an explosion of interest in so-called experimental philosophy, which is a methodological view according to which claims about conceptual truths that appeal to our intuitions should be tested by way of surveys presented to ordinary language users. One experimental result is that the majority of people are willing to grant that psychopaths make moral judgments, which challenges internalism. In the first article, ‘The Rise and Fall of Experimental Philosophy’, I argue that these results pose no real threat to internalism, since experimental philosophy is based on a too simple conception of the relationship between language use and concepts. Only the reactions of competent users in pragmatically neutral and otherwise conducive circumstances yield evidence about conceptual truths, and such robust intuitions remain inaccessible to surveys for reasons of principle. The epistemology of folk concepts must still be based on Socratic dialogue and critical reflection, whose character and authority I discuss at the end of the paper. The internal connection between moral judgment and motivation led many metaethicists in the past century to believe along Humean lines that judgment itself consists in a pro-attitude rather than a belief. This expressivist view, as it is called these days, has far-reaching consequences in metaethics. In the second essay I argue that perhaps the most sophisticated form of contemporary expressivism, Allan Gibbard’s norm-expressivism, according to which moral judgments are decisions or contingency plans, is implausible from the perspective of the theory of action. In certain circumstances it is possible to think that something is morally required of one without deciding to do so. Morality is not a matter of the will. Instead, I sketch on the basis of Robert Brandom’s inferentialist semantics a weak form of judgment internalism, according to which the content of moral judgment is determined by a commitment to a particular kind of practical reasoning. The last two essays in the dissertation emphasize the role of mutual recognition in the development and maintenance of responsible and autonomous moral agency. I defend a compatibilist view of autonomy, according to which agents who are unable to recognize right and wrong or act accordingly are not responsible for their actions – it is not fair to praise or blame them, since they lacked the relevant capacity to do otherwise. Conversely, autonomy demands an ability to recognize reasons and act on them. But as a long tradition in German moral philosophy whose best-known contemporary representative is Axel Honneth has it, both being aware of reasons and acting on them requires also the right sort of higher-order attitudes toward the self. Without self-respect and self-confidence we remain at the mercy of external pressures, even if we have the necessary normative competence. These attitudes toward the self, in turn, are formed through mutual recognition – we value ourselves when those who we value value us. Thus, standing in the right sort of relations of recognition is indirectly necessary for autonomy and moral responsibility. Recognition and valuing are concretely manifest in actions and institutions, whose practices make possible participation on an equal footing. Seeing this opens the way for a kind of normative social criticism that is grounded in the value of freedom and automomy, but is not limited to defending negative rights. It thus offers a new way to bridge the gap between liberalism and communitarianism.

The Feminist Transformation of Bioethics : An Analysis of Theoretical Perspectives and Practical Applications in Feminist Bioethics

The purpose of this study is to examine how transformation is defining feminist bioethics and to determine the nature of this transformation. Behind the quest for transformation is core feminism and its political implications, namely, that women and other marginalized groups have been given unequal consideration in society and the sciences and that this situation is unacceptable and should be remedied. The goal of the dissertation is to determine how feminist bioethicists integrate the transformation into their respective fields and how they apply the potential of feminism to bioethical theories and practice. On a theoretical level, feminist bioethicists wish to reveal how current ways of knowing are based on inequality. Feminists pay special attention especially to communal and political contexts and to the power relations endorsed by each community. In addition, feminist bioethicists endorse relational ethics, a relational account of the self in which the interconnectedness of persons is important. On the conceptual level, feminist bioethicists work with beliefs, concepts, and practices that give us our world. As an example, I examine how feminist bioethicists have criticized and redefined the concept of autonomy. Feminist bioethicists emphasize relational autonomy, which is based on the conviction that social relationships shape moral identities and values. On the practical level, I discuss stem cell research as a test case for feminist bioethics and its ability to employ its methodologies. Analyzing these perspectives allowed me first, to compare non-feminist and feminist accounts of stem cell ethics and, second, to analyze feminist perspectives on the novel biotechnology. Along with offering a critical evaluation of the stem cell debate, the study shows that sustainable stem cell policies should be grounded on empirical knowledge about how donors perceive stem cell research and the donation process. The study indicates that feminist bioethics should develop the use of empirical bioethics, which takes the nature of ethics seriously: ethical decisions are provisional and open for further consideration. In addition, the study shows that there is another area of development in feminist bioethics: the understanding of (moral) agency. I argue that agency should be understood to mean that actions create desires.

Moral Education in the Japanese Primary School Curricular Revision at the Turn of the Twenty-first Century: Aiming at a Rich and Beautiful Kokoro

This study examines values education in Japanese schools at the beginning of the millennium. The topic was approached by asking the following three questions concerning the curricular background, the morality conveyed through textbooks and the characterization of moral education from a comparative viewpoint: 1) What role did moral education play in the curriculum revision which was initiated in 1998 and implemented in 2002? 2) What kinds of moral responsibilities and moral autonomy do the moral texts develop? 3) What does Japanese moral education look like in terms of the comparative framework? The research was based on curriculum research. Its primary empirical data consisted of the national curriculum guidelines for primary school, which were taken into use in 2002, and moral texts, Kokoro no nôto, published by the Ministry of Education in the same context. Since moral education was approached in the education reform context, the secondary research material involved some key documents of the revision process from the mid-1990s to 2003. The research material was collected during three fieldwork periods in Japan (in 2002, 2003 and 2005). The text-analysis was conducted as a theory-dependent qualitative content analysis. Japanese moral education was analyzed as a product of its own cultural tradition and societal answer to the current educational challenges. In order to understand better its character, secular moral education was reflected upon from a comparative viewpoint. The theory chosen for the comparative framework, the value realistic theory of education, represented the European rational education tradition as well as the Christian tradition of values education. Moral education, which was the most important school subject at the beginning of modern school, was eliminated from the curriculum for political reasons in a school reform after the Second World War, but has gradually regained a stronger position since then. It was reinforced particularly at the turn of millennium, when a curriculum revision attempted to respond to educational and learning problems by emphasizing qualitative and value aspects. Although the number of moral lessons and their status as a non-official-subject remained unchanged, the Ministry of Education made efforts to improve moral education by new curricular emphases, new teaching material and additional in-service training possibilities for teachers. The content of the moral texts was summarized in terms of moral responsibility in four moral areas (intrapersonal, interpersonal, natural-supranatural and societal) as follows: 1) continuous self-development, 2) caring for others, 3) awe of life and forces beyond human power, and 4) societal contribution. There was a social-societal and emotional emphasis in what was taught. Moral autonomy, which was studied from the perspectives of rational, affective and individuality development, stressed independence in action through self-discipline and responsibility more than rational self-direction. Japanese moral education can be characterized as the education of kokoro (heart) and the development of character, which arises from virtue ethics. It aims to overcome egoistic individualism by reciprocal and interdependent moral responsibility based on responsible interconnectedness.

Asiakkaana vaikeasti aivovammainen. Vammautuneen ja omaisen kokemuksia itsemääräämisoikeudesta ja osallisuudesta

Tutkielman aiheena ovat vaikeasti aivovammaisen nuoren aikuisen sekä omaisen kokemukset hyvinvointipalveluista. Hyvinvointipalveluilla tutkielmassa viitataan julkisen sektorin järjestämiin lakisääteisiin sosiaali- ja terveyspalveluihin. Itsemääräämisoikeudella tarkoitetaan tässä yhteydessä yksilön moraalista oikeutta tehdä omaan elämään liittyviä valintoja ja päätöksiä ja toteuttaa niitä. Omaisen osallisuutta lähestytään osallisuutena vammautuneen läheisen hyvinvoinnin edistämiseen palvelujärjestelmän kontekstissa. Tutkielma kuuluu vammaistutkimukseen osana sosiaalipoliittista keskustelua. Se liittyy hyvinvointipalvelujen asiakkuutta koskevaan tutkimukseen. Tutkimuksen lähtökohtana on, että kokemuksellinen tieto on tärkeää sosiaalityön toimintakäytäntöjen kehittämisen kannalta. Keskeisimmät tutkimukset tutkielman kannalta ovat Heli Valokiven (2008), Eija Jumiskon (2008) ja Anna Metterin (2004) tutkimukset. Aineiston hankintamenetelmänä tutkielmassa on käytetty puolistrukturoitua haastattelua. Tutkielmaa varten on haastateltu neljää 27 - 36 -vuotiasta nuorta aikuista. Kaikilla haastateltavilla on vaikea aivovamma. He ovat työkyvyttömyyseläkkeellä ja asuvat vaikeavammaisten palveluasumisyksikössä Etelä-Suomen alueella. Tutkielmaa varten on haastateltu neljää omaista, joista osa on haastateltujen vammautuneiden omaisia. Aineiston analyysin välineenä on käytetty fenomenologis-hermeneuttista tutkimusotetta ja tarinallista lähestymistapaa.Vaikeavammaisten palveluasumisyksikköä lähestytään tutkielmassa vammautuneen arjen sosiaalisena näyttämönä yksityisen ja julkisen tilan välimaastossa. Vaikean aivovamman saanut henkilö toteuttaa itsemääräämistään asumisen arjessa monin eri tavoin. Hän luotaa suhdettaan vammaisuuteensa ja antaa sille eri merkityksiä. Hän arvioi omaa toimijuuttaan suhteessa vammaisuuden kokemukseen. Muistivaikeuksien johdosta vammautunut voi tarvita tarinallista tukea toimijuutensa edistämiseksi. Luottamus on keskeinen voimavara vammautuneen elämässä, sillä luotetut toiset voivat tukea vammautuneen toimijuutta ja haastaa valtadiskurssien määritelmiä hänen tilanteestaan. Vaikeasti vammautuneen omaisella voi olla tärkeä rooli vammautuneen arjessa. Omaisen osallisuutta lähestytään tutkielmassa kokemuksena ja toimintana. Tutkielmassa erotetaan kolme osallisuuden kokemuksellista ja toiminnallista ulottuvuutta, jotka ovat olemassaolon kipu, taistelu ja pyrkimys tasapainoon. Omaisen toimijarooleja esitaistelijana ja hoivaajana tarkastellaan sosiaalityön ja sosiaalipolitiikan toimintaympäristöä vasten. Omainen suhteuttaa palvelujärjestelmää koskevia odotuksiaan hyvinvointivaltion lupaukseen, mutta saattaa päätyä kohtuuttomaan tilanteeseen. Omaisen institutionaalisen luottamuksen kokemusta lähestytään turvautuvan, tukeutuvan ja menetetyn luottamuksen näkökulmasta. Sosiaalityön ja sosiaalipolitiikan toimintaympäristö on muuttunut monin tavoin ja asiakkaalta odotetaan enenevässä määrin kykyjä toimia markkinoistuneessa yhteiskunnassa. Vammaispolitiikan keinoin pyritään edistämään vaikeavammaisten itsemääräämistä ja yhdenvertaisuutta. Itsemääräämisen eetos voi kuitenkin tukea jo ennestään vahvojen ja aktiivisten toimijoiden toimijuutta. Sosiaalityön haasteena on tukea heikoimmassa asemassa olevien mahdollisuuksia päättää omaa arkea koskevista asioista. Omaisen osallisuuden tukeminen voi mahdollistaa osaltaan vammautuneen itsemääräämistä arjessa. Tasapaino on kuitenkin herkkä, ja sosiaalityön ammatillisena haasteena on hakea tasapainoa asiakkaan itsemääräämisoikeuden ja omaisen osallisuuden välillä.

"Se luulo on aina paljon vaikeempaa kuin se tieto”: kokemuksia perinnöllisen sydänsairauden riskistä

Tiivistelmä – Referat – Abstract Tausta: Perinnöllisyystutkimuksen kehittymisen on katsottu johtavan siihen, että tulevaisuudessa perimää koskevalla riski-informaatiolla saattaisi olla keskeinen rooli terveydenhuollossa. Perimää koskeva riski-informaatio perustuu todennäköisyyksiin ja sen avulla saattaa olla mahdollista ennustaa tulevaa terveydentilaa ympäristöön ja käyttäytymiseen liittyvät tekijät huomioiden. Riski-informaatio voi mahdollistaa yksilöllisten terveyskäyttäytymisen muutokseen tähtäävien interventioiden räätälöimisen. Tutkimuksen kontekstissa on keskusteltu siitä, tulisiko yllättävistä, perinnölliseen riskiin viittaavista löydöksistä kertoa tutkittaville. Kertominen saattaa parhaassa tapauksessa pelastaa ihmishenkiä, mutta myös aiheuttaa huolta yksilölle ja tämän lähipiirille. Metodit ja tutkimuskysymykset: Tässä tutkimuksessa tarkastellaan 2000-luvun alkupuolella Suomessa tehtyyn laajaan terveystutkimukseen osallistuneiden kokemuksia tutkimusprosessista, jonka yhteydessä heille kerrottiin terveystutkimuksen yhteydessä havaitusta, perinnölliseen rytmihäiriöalttiuteen (pitkä QT-aika -oireyhtymä) viittaavasta geenimuutoksesta. Metodologisena lähestymistapana käytetty tulkitseva fenomenologinen analyysi (IPA) on fenomenologiaan, hermeneutiikkaan ja idiografiaan pohjaava laadullinen lähestymistapa yksilön kokemusmaailman tutkimiseen. Tutkittavien kokemusmaailman kuvauksen ja tulkinnan kautta on etsitty vastausta seuraaviin kysymyksiin: 1) Miten haastateltavat kokivat tilanteen, jossa heille kerrottiin pitkä QT-aika -oireyhtymään viittaavasta löydöksestä? 2) Millaisia kokemuksia haastateltavilla on kertomista seuranneesta ajanjaksosta ja toimenpiteistä? 3) Millaisia näkemyksiä haastateltavilla on siitä, miten perinnöllisiin sairauksiin viittaavista löydöksistä kerrottaessa tulisi toimia? Tulokset ja johtopäätökset: Haastateltavien sisäistä ja välistä kokemusmaailmaa leimaa ristiriitaisuus kaikissa aineistosta esiin nousevassa neljässä kattoteemassa: 1) ristiriitaiset kokemukset pitkä QT-aika tutkimusprosessista, 2) perimästä kertominen kontekstuaalisena kysymyksenä, 3) perimää koskevan tiedonkäsittelyn kompleksisuus ja 4) autonomia. Ristiriitaiset kokemukset pitkä QT-aika -tutkimusprosessista kertovat siitä, että vaikka valtaosa tutkittavista on tyytyväisiä tutkimusprosessiin ja kiitollinen sen kautta saadusta riski-informaatiosta, tutkimusprosessin kulkuun liittyvät seikat synnyttävät ristiriitoja yksilöiden sisäisessä kokemusmaailmassa. Sisäistä ristiriitaa kokeneet toivovat mahdollisuutta jatkoseurantaan ja lisäinformaation saamiseen esimerkiksi asiantuntijakontaktien ja perinnöllisyysneuvonnan muodossa. Epävarmaan geenitestin tuloksen odotusaikaan verrattuna geenitestin tuloksen saaminen ja perimää koskevan informaation henkilökohtaisen merkityksen ymmärtäminen vähentää huolta, mahdollistaa minäkäsitykseen kohdistuvan uhan työstämisen ja hallinnan tunteen palauttamisen, ja sen koetaan tukevan elämäntapoihin ja elämänsuunnitteluun liittyvissä valinnoissa. Kaikki haastateltavat kannattavat perimästä kertomista kontekstuaalisena kysymyksenä, johon ei ole yksiselitteistä vastausta. Kysymys siitä, miten perimästä kerrotaan, näyttää tämän tutkimuksen pohjalta olevan keskeisempi, kuin kysymys siitä, pitäisikö perimästä kertoa. Perimää koskeva tiedonkäsittelyn kompleksisuus viittaa siihen, että todennäköisyyksiin perustuvan riski-informaation käsittely on haastavaa. Autonomia ja siihen liittyvä puhe hallinnasta nousevat esiin eri konteksteissa. Sairauden perinnöllisyyden vuoksi autonomia koetaan toisinaan rajallisena, ja omat vaikutusmahdollisuudet tulevaan terveydentilaan toisaalta tunnustetaan ja toisaalta kyseenalaistetaan. Avainsanat – Nyckelord – Keywords biopankkitutkimus, riski-informaatio, perimästä kertominen, tiedonkäsittely, autonomia