An Infant with Food Allergy and Eczema in the Family – The Mental and Economic Burden of Caring

Allergic diseases including food allergy and eczema in an infant in combination with the everyday activities of caring for a family will pose challenges to parents. Only fragments of these challenges are revealed to health care professionals. Families have varying mental, social and economic resources to help them care for an allergic infant, and all such resources are important in determining how families succeed in meeting these challenges and the quality of the infant’s care. This study evaluated the whole burden to the family caused by an infant's allergic disease during the first 24 months of life. As the primary caregiver during this period is usually the mother, her perspective was considered important. Ecocultural theory, which considers families as capable of modifying the positive and negative forces facing them, was taken as the frame of reference. Data were collected as part of an ongoing prospective mother-infant study, and the methods included severity scoring of atopic dermatitis, dietary records, health-related quality of life measurements and assessments of the use of health care services and medications for treating the infant’s eczema, food allergy and asthma. Interviews with mothers were analysed by deductive content analysis on the basis of ecocultural theory and the family empowerment model. The theme “Living an ordinary family life” guided the organization of family activities essential for treating the infant's food allergy and eczema. These activities were sources of both strain and support for the mothers, the allergy-related supporting factors being the mother’s own knowledge of the allergy, hopes for an improvement in the infant’s condition, social support and work. An infant’s food allergy at the age of one year caused considerable strain for the mother in cases where the introduction of new foods into the child’s diet was delayed. This delay was still causing the mother additional strain when the child was 24 months of age. The infants waking at night at the ages of 12 and 24 months because of itching related to eczema caused strain for the mothers. The infants’ health-related quality of life was impaired at ages of 6 and 12 months compared with healthy infants. The principal reasons for impairments were itching, scratching and sleep disturbances at 6 and 12 months and treatment difficulties at 6 months. Problems with getting to sleep were reported at all stages irrespective of eczema and were also present in healthy infants. The economic impact of the treatment of allergic diseases on families during the first 24 months was 131 EUR (2006 value) in cases of eczema and 525 EUR in cases of food allergy. From the societal perspective, the costs of food allergy were a median of 3183 EUR (range 628–11 560 EUR) and of eczema a median of 275 EUR (range 94–1306 EUR). These large variations in costs in food allergy and eczema indicate that disease varies greatly . In conclusion, food allergy and eczema cause extra activities and costs to families which arrange these disease-related activities in such a way that they support the leading family theme “Living an ordinary family life”. Health care professionals should consider this thematic character of family life and disease-related activities in order to ensure that new treatments are sustainable, meaningful and tailored to daily activities. In addition, those mothers who are experiencing difficulties with food allergic infants or infants with eczema should be recognized early and provided with individual encouragement and support from health clinics. In the light of the present results, early detection of symptoms and effective parental guidance can contribute to the well-being and health-related quality of life of the child and family.

Determining risk potential through accidents and near-accidents: an empirical study in a steel factory

Fatal and permanently disabling accidents form only one per I cent of all occupational accidents but in many branches of industry they account for more than half the accident costs. Furthermore the human suffering of the victim and his family is greater in severe accidents than in slight ones. For both human and economic reasons the severe accident risks should be identified befor injuries occur. It is for this purpose that different safety analysis methods have been developed . This study shows two new possible approaches to the problem.. The first is the hypothesis that it is possible to estimate the potential severity of accidents independent of the actual severity. The second is the hypothesis that when workers are also asked to report near accidents, they are particularly prone to report potentially severe near accidents on the basis of their own subjective risk assessment. A field study was carried out in a steel factory. The results supported both the hypotheses. The reliability and the validity of post incident estimates of an accident's potential severity were reasonable. About 10 % of accidents were estimated to be potentially critical; they could have led to death or very severe permanent disability. Reported near accidents were significantly more severe, about 60 $ of them were estimated to be critical. Furthermore the validity of workers subjective risk assessment, manifested in the near accident reports, proved to be reasonable. The studied new methods require further development and testing. They could be used both in routine usage in work places and in research for identifying and setting the priorities of accident risks.

Equivalence and translation strategies in multilingual thesaurus construction

In the present dissertation, multilingual thesauri were approached as cultural products and the focus was twofold: On the empirical level the focus was placed on the translatability of certain British-English social science indexing terms into the Finnish language and culture at a concept, a term and an indexing term level. On the theoretical level the focus was placed on the aim of translation and on the concept of equivalence. In accordance with modern communicative and dynamic translation theories the interest was on the human dimension. The study is qualitative. In this study, equivalence was understood in a similar way to how dynamic, functional equivalence is commonly understood in translation studies. Translating was seen as a decision-making process, where a translator often has different kinds of possibilities to choose in order to fulfil the function of the translation. Accordingly, and as a starting point for the construction of the empirical part, the function of the source text was considered to be the same or similar to the function of the target text, that is, a functional thesaurus both in source and target context. Further, the study approached the challenges of multilingual thesaurus construction from the perspectives of semantics and pragmatics. In semantic analysis the focus was on what the words conventionally mean and in pragmatics on the ‘invisible’ meaning - or how we recognise what is meant even when it is not actually said (or written). Languages and ideas expressed by languages are created mainly in accordance with expressional needs of the surrounding culture and thesauri were considered to reflect several subcultures and consequently the discourses which represent them. The research material consisted of different kinds of potential discourses: dictionaries, database records, and thesauri, Finnish versus British social science researches, Finnish versus British indexers, simulated indexing tasks with five articles and Finnish versus British thesaurus constructors. In practice, the professional background of the two last mentioned groups was rather similar. It became even more clear that all the material types had their own characteristics, although naturally not entirely separate from each other. It is further noteworthy that the different types and origins of research material were not used to represent true comparison pairs, and that the aim of triangulation of methods and material was to gain a holistic view. The general research questions were: 1. Can differences be found between Finnish and British discourses regarding family roles as thesaurus terms, and if so, what kinds of differences and which are the implications for multilingual thesaurus construction? 2. What is the pragmatic indexing term equivalence? The first question studied how the same topic (family roles) was represented in different contexts and by different users, and further focused on how the possible differences were handled in multilingual thesaurus construction. The second question was based on findings of the previous one, and answered to the final question as to what kinds of factors should be considered when defining translation equivalence in multilingual thesaurus construction. The study used multiple cases and several data collection and analysis methods aiming at theoretical replication and complementarity. The empirical material and analysis consisted of focused interviews (with Finnish and British social scientists, thesaurus constructors and indexers), simulated indexing tasks with Finnish and British indexers, semantic component analysis of dictionary definitions and translations, coword analysis and datasets retrieved in databases, and discourse analysis of thesauri. As a terminological starting point a topic and case family roles was selected. The results were clear: 1) It was possible to identify different discourses. There also existed subdiscourses. For example within the group of social scientists the orientation to qualitative versus quantitative research had an impact on the way they reacted to the studied words and discourses, and indexers placed more emphasis on the information seekers whereas thesaurus constructors approached the construction problems from a more material based solution. The differences between the different specialist groups i.e. the social scientists, the indexers and the thesaurus constructors were often greater than between the different geo-cultural groups i.e. Finnish versus British. The differences occurred as a result of different translation aims, diverging expectations for multilingual thesauri and variety of practices. For multilingual thesaurus construction this means severe challenges. The clearly ambiguous concept of multilingual thesaurus as well as different construction and translation strategies should be considered more precisely in order to shed light on focus and equivalence types, which are clearly not self-evident. The research also revealed the close connection between the aims of multilingual thesauri and the pragmatic indexing term equivalence. 2) The pragmatic indexing term equivalence is very much context-depended. Although thesaurus term equivalence is defined and standardised in the field of library and information science (LIS), it is not understood in one established way and the current LIS tools are inadequate to provide enough analytical tools for both constructing and studying different kinds of multilingual thesauri as well as their indexing term equivalence. The tools provided in translation science were more practical and theoretical, and especially the division of different meanings of a word provided a useful tool in analysing the pragmatic equivalence, which often differs from the ideal model represented in thesaurus construction literature. The study thus showed that the variety of different discourses should be acknowledged, there is a need for operationalisation of new types of multilingual thesauri, and the factors influencing pragmatic indexing term equivalence should be discussed more precisely than is traditionally done.

Generic and professional caring in a Chinese setting: an ethnopraphic study

The objective of the present study is to describe the cultural care practices, meanings, values and beliefs which form the basis of caring in a Chinese context. The research has its starting point in a caring science perspective and a qualitative research approach with interpretative ethnography as methodological guideline. The theoretical perspective is formed by elements of the theory of caritative caring, developed by Eriksson, and the theory of Culture Care Diversity and Universality, developed by Leininger. Previous research of suffering, culture and caring is described and also a presentation of actual transcultural nursing research as well as a presentation of the social structure dimensions of Chinese culture is included in the theoretical background. The empirical part includes patients and relatives, nurses and Hu Gongs as informants. The data collected are analysed based on Geertz’s idea of forming “thick descriptions” through examining the “what, how and why” of people’s actions. The findings show that the family has a prominent position in Chinese caring practices. The patient plays an unobtrusive role and a mutual dependence between the patient and the family members is evident. The professional nursing care is an extended act which includes the family in the caring relationship. The care practices of the Chinese nurse are characterized by great professional nursing skills. Suffering is described by the informants as being caused by disease, pain and social circumstances. “Social suffering” is described as worse than physical or mental suffering. Culturally competent and congruent care is a prerequisite for avoiding cultural pain, imposition and blindness when caring for the suffering human being. The findings of the present study necessitate a broadening in caring theory to include the family in the caring relationship. A further conclusion is that a broadening in our perception and understanding of culture would promote the delivery of culturally competent and congruent care. Suffering need to be seen as enclosed in cultural patterns of how it is expressed, interpreted, understood and relieved. Care and caring need to be seen as embedded in culture and the care practices values and beliefs have to be congruent with the cultural patterns where the care is provided.

The Structural Basis for inorganic Pyrophosphatase Catalysis and Regulation

Inorganic pyrophosphatases (PPases) are essential enzymes for every living cell. PPases provide the necessary thermodynamic pull for many biosynthetic reactions by hydrolyzing pyrophosphate. There are two types of PPases: integral membrane-bound and soluble enzymes. The latter type is divided into two non-homologous protein families, I and II. Family I PPases are present in all kingdoms of life, whereas family II PPases are only found in prokaryotes, including archae. Family I PPases, particularly that from Saccharomyces cerevisiae, are among the most extensively characterized phosphoryl transfer enzymes. In the present study, we have solved the structures of wild-type and seven active site variants of S. cerevisiae PPase bound to its natural metal cofactor, magnesium ion. These structures have facilitated derivation of the complete enzyme reaction scheme for PPase, fulfilling structures of all the reaction intermediates. The main focus in this study was on a novel subfamily of family II PPases (CBSPPase) containing a large insert formed by two CBS domains and a DRTGG domain within the catalytic domain. The CBS domain (named after cystathionine beta-synthase in which it was initially identified) usually occurs as tandem pairs with two or four copies in many proteins in all kingdoms of life. The structure formed by a pair of CBS domains is also known as a Bateman domain. CBS domains function as regulatory units, with adenylate ligands as the main effectors. The DRTGG domain (designated based on its most conserved residues) occurs less frequently and only in prokaryotes. Often, the domain co-exists with CBS domains, but its function remains unknown. The key objective of the current study was to explore the structural rearrangements in the CBS domains induced by regulatory adenylate ligands and their functional consequences. Two CBS-PPases were investigated, one from Clostridium perfringens (cpCBS-PPase) containing both CBS and DRTGG domains in its regulatory region and the other from Moorella thermoacetica (mt CBS-PPase) lacking the DRTGG domain. We additionally constructed a separate regulatory region of cpCBS-PPase (cpCBS). Both full-length enzymes and cpCBS formed homodimers. Two structures of the regulatory region of cpCBS-PPase complexed with the inhibitor, AMP, and activator, diadenosine tetraphosphate, were solved. The structures were significantly different, providing information on the structural pathway from bound adenylates to the interface between the regulatory and catalytic parts. To our knowledge, these are the first reported structures of a regulated CBS enzyme, which reveal large conformational changes upon regulator binding. The activator-bound structure was more open, consistent with the different thermostabilities of the activator- and inhibitor-bound forms of cpCBS-PPase. The results of the functional studies on wild-type and variant CBS-PPases provide support for inferences made on the basis of structural analyses. Moreover, these findings indicate that CBS-PPase activity is highly sensitive to adenine nucleotide distribution between AMP, ADP and ATP, and hence to the energy level of the cell. CBS-PPase activity is markedly inhibited at low energy levels, allowing PPi energy to be used for cell survival instead of being converted into heat.

Generation and Characterization of Knockout Mice and Analysis of Patient Material Demonstrates a Role for Tissue Inhibitor of Metalloproteinases 4 (Timp4) in the Cardiovascular System and Tumor Metastasis

This thesis focuses on tissue inhibitor of metalloproteinases 4 (TIMP4) which is the newest member of a small gene and protein family of four closely related endogenous inhibitors of extracellular matrix (ECM) degrading enzymes. Existing data on TIMP4 suggested that it exhibits a more restricted expression pattern than the other TIMPs with high expression levels in heart, brain, ovary and skeletal muscle. These observations and the fact that the ECM is of special importance to provide the cardiovascular system with structural strength combined with elasticity and distensibility, prompted the present molecular biologic investigation on TIMP4. In the first part of the study the murine Timp4 gene was cloned and characterized in detail. The structure of murine Timp4 genomic locus resembles that in other species and of the other Timps. The highest Timp4 expression was detected in heart, ovary and brain. As the expression pattern of Timp4 gives only limited information about its role in physiology and pathology, Timp4 knockout mice were generated next. The analysis of Timp4 knockout mice revealed that Timp4 deficiency has no obvious effect on the development, growth or fertility of mice. Therefore, Timp4 deficient mice were challenged using available cardiovascular models, i.e. experimental cardiac pressure overload and myocardial infarction. In the former model, Timp4 deficiency was found to be compensated by Timp2 overexpression, whereas in the myocardial infarct model, Timp4 deficiency resulted in increased mortality due to increased susceptibility for cardiac rupture. In the wound healing model, Timp4 deficiency was shown to result in transient retardation of re-epithelialization of cutaneous wounds. Melanoma tumor growth was similar in Timp4 deficient and control mice. Despite of this, lung metastasis of melanoma cells was significantly increased in Timp4 null mice. In an attempt to translate the current findings to patient material, TIMP4 expression was studied in human specimens representing different inflammatory cardiovascular pathologies, i.e. giant cell arteritis, atherosclerotic coronary arteries and heart allografts exhibiting signs of chronic rejection. The results showed that cardiovascular expression of TIMP4 is elevated particularly in areas exhibiting inflammation. The results of the present studies suggest that TIMP4 has a special role in the regulation of tissue repair processes in the heart, and also in healing wounds and metastases. Furthermore, evidence is provided suggesting the usefulness of TIMP4 as a novel systemic marker for vascular inflammation.

Coercion, Perceived Care and Quality of Life Among Patients in Psychiatric Hospitals

The goals of the study were to describe patients’ perceptions of care after experiencing seclusion/restraint and their quality of life. The goal was moreover to identify methodological challenges related to studies from the perspective of coerced patients. The study was conducted in three phases between September 2008 and April 2012. In the first phase, the instrument Secluded/ Restrained Patients’ Perception of their Treatment (SR-PPT) was developed and validated in Japan in cooperation with a Finnish research group (n = 56). Additional data were collected over one year from secluded/restrained patients using the instrument (n = 90). In the second phase, data were collected during the discharge process (n = 264). In the third phase, data were collected from electronic databases. Methodological and ethical issues were reviewed (n = 32) using systematic review method. Patients perceived that co-operation with the staff was poor; patients’ opinions were not taken into account, treatment targets collated and treatment methods were seen in different ways. Patients also felt that their concerns were not well enough understood. However, patients received getting nurses’ time. In particular, seclusion/restraint was considered unnecessary. The patients felt that they benefited from the isolation in treating their problems more than they needed it, even if the benefit was seen to be minor. Patients treated on forensic wards rated their treatment and care significantly lower than in general units. During hospitalization secluded/restrained patients evaluated their quality of life, however, better than did non-secluded/restrained patients. However, no conclusion is drawn to the effect that the better quality of life assessment is attributable to the seclusion/restraint because patients’ treatment period after the isolation was long and because of many other factors, as rehabilitation, medication, diagnostic differences, and adaptation. According to the systematic mixed studies review variation between study designs was found to be a methodological challenge. This makes comparison of the results more difficult. A research ethical weakness is conceded as regards descriptions of the ethical review process (44 %) and informed consent (32 %). It can be concluded that patients in psychiatric hospital care and having a voice as an equal expert require special attention to clinical nursing, decision-making and service planning. Patients and their family members will be consulted in plans of preventive and alternative methods for seclusion and restraint. The study supports the theory that in ethical decision-making situations account should be taken of medical indications, in addition to the patients’ preferences, the effect of treatment on quality of life, and this depends on other factors. The connection between treatment decisions and a patient’s quality of life should be evaluated more structurally in practice. Changing treatment culture towards patients’ involvement will support daily life in nursing and service planning taking into account improvements in patients’ quality of life.

Let Go and Remember. How Finnish Communities Experienced and Memorialized School Shootings

This study examines the aftermath of mass violence in local communities. Two rampage school shootings that occurred in Finland are analyzed and compared to examine the ways in which communities experience, make sense of, and recover from sudden acts of mass violence. The studied cases took place at Jokela High School, in southern Finland, and at a polytechnic university in Kauhajoki, in western Finland, in 2007 and 2008 respectively. Including the perpetrators, 20 people lost their lives in these shootings. These incidents are part of the global school shooting phenomenon with increasing numbers of incidents occurring in the last two decades, mostly in North America and Europe. The dynamic of solidarity and conflict is one of the main themes of this study. It builds upon previous research on mass violence and disasters which suggests that solidarity increases after a crisis, and that this increase is often followed by conflict in the affected communities. This dissertation also draws from theoretical discussions on remembering, narrating, and commemorating traumatic incidents, as well as the idea of a cultural trauma process in which the origins and consequences of traumas are negotiated alongside collective identities. Memorialization practices and narratives about what happened are vital parts of the social memory of crises and disasters, and their inclusive and exclusive characteristics are discussed in this study. The data include two types of qualitative interviews; focused interviews with 11 crisis workers, and focused, narrative interviews with 21 residents of Jokela and 22 residents of Kauhajoki. A quantitative mail survey of the Jokela population (N=330) provided data used in one of the research articles. The results indicate that both communities experienced a process of simultaneous solidarity and conflict after the shootings. In Jokela, the community was constructed as a victim, and public expressions of solidarity and memorialization were promoted as part of the recovery process. In Kauhajoki, the community was portrayed as an incidental site of mass violence, and public expressions of solidarity by distant witnesses were labeled as unnecessary and often criticized. However, after the shooting, the community was somewhat united in its desire to avoid victimization and a prolonged liminal period. This can be understood as a more modest and invisible process of “silent solidarity”. The processes of enforced solidarity were partly made possible by exclusion. In some accounts, the family of the perpetrator in Jokela was excluded from the community. In Kauhajoki, the whole incident was externalized. In both communities, this exclusion included associating the shooting events, certain places, and certain individuals with the concept of evil, which helped to understand and explain the inconceivable incidents. Differences concerning appropriate emotional orientations, memorialization practices and the pace of the recovery created conflict in both communities. In Jokela, attitudes towards the perpetrator and his family were also a source of friction. Traditional gender roles regarding the expression of emotions remained fairly stable after the school shootings, but in an exceptional situation, conflicting interpretations arose concerning how men and women should express emotion. The results from the Jokela community also suggest that while increased solidarity was seen as important part of the recovery process, some negative effects such as collective guilt, group divisions, and stigmatization also emerged. Based on the results, two simultaneous strategies that took place after mass violence were identified; one was a process of fast-paced normalization, and the other was that of memorialization. Both strategies are ways to restore the feeling of security shattered by violent incidents. The Jokela community emphasized remembering while the Kauhajoki community turned more to the normalization strategy. Both strategies have positive and negative consequences. It is important to note that the tendency to memorialize is not the only way of expressing solidarity, as fast normalization includes its own kind of solidarity and helps prevent the negative consequences of intense solidarity.

Porous Bodies, Porous Minds. Emotions and the Supernatural in the Íslendingasögur (ca. 1200–1400)

In my PhD Thesis, I study the conceptions and representation of emotions in medieval 13th and 14th-century Iceland. I have used Icelandic saga literature as my source material and Icelandic Family sagas (Íslendingasögur) as my main sources. Firstly, I wished to explore in my study the medieval Icelandic folk theory of emotions: what emotions were thought to be, from what they originated and how they operated? Secondly, in earlier research it has been shown that emotions were seldom described in Íslendingasögur. They were mostly represented in dialogue, poetry or in somatic changes (e.g. turning pale). Consequently, I examined whether medieval Icelanders had alternative emotion discourses in literature, in addition to the usual manner of representation. My study consists of qualitative case studies, and I have analysed the sources intertextually. I suggest that medieval Icelanders regarded emotions as movements of the mind. The mind existed in the heart. As a consequence, emotions were considered physical in nature. The human body and therefore also the human mind was considered porous: if the mind of the person was not strong enough, supernatural agents and forces could penetrate theboundaries of his/her body as winds or sharp projectiles. Correspondingly, minds of strong-willed people could penetrate the minds of others. As a result, illness and emotions could upspring. People did not always distinguish between emotions and physical illnesses. Excessive emotions could cause illness, even death. Especially fear, grief and emotions of moral responsibility (e.g. guilt) made people vulnerable to the supernatural influence. Guilt was considered part of the emotional experience of misfortune (ógæfa), and in literature guilt could also be represented as eye pain that was inflicted upon the sufferer by a supernatural agent in a dream. Consequently, supernatural forces and beings were part of the upspring of emotions, but also part of the representation of emotions in literature: They caused the emotion but their presence also represented the emotional turmoil in the lives of the people that the supernatural agents harassed; emotions that had followed from norm transgressions, betrayal and other forms of social disequilibrium. Medieval readers and listeners of the Íslendingasögur were used to interpreting such different layers of meaning in texts.

Psychological well-being of the parents and child development, behavior, and quality of life in very low birth weight infants

The parents of premature infants, especially the mothers, are at increased risk for distress. Infants born prematurely are at risk for developmental problems. The aim of this study was to investigate whether the psychological well-being of both parents is associated with child development in very low birth weight (VLBW, ≤1500g) children. The burden of prematurity-related morbidity to the children and to the family was also assessed. A cohort of 201 VLBW infants born during 2001–2006 in the Turku University Hospital, Finland, and their parents were studied (I–IV). One study included a control group (n=166) of full-term infants (IV). The psychological well-being of the parents was evaluated by assessments of depressive symptoms, parenting stress, the sense of coherence and general family functioning. Cognitive, behavioral, and socio-emotional development, and the health-related quality of life (HRQoL) of the children were determined when the children were 2 to 8 years old. The psychological well-being of the parents was associated with the cognitive, behavioral and social development of the VLBW children. The VLBW infants with prematurity-related morbidities had a poorer HRQoL and the general functioning of the family was inferior compared to the control children and their families. 64.5% of the VLBW children survived without morbidities. Most of the VLBW children did not have significant behavior problems (93%), had normal social skills (63%), had no emotional problems (64%), and had no problems in executive functioning (62%). Only 3% of the surviving VLBW infants had significant cognitive delay. In conclusion, the depressive symptoms and stress of the parents can be risk factors for disadvantageous child development, while a strong sense of coherence can be protective. Parents of the premature children with developmental delays might also experience more depressive symptoms and stress than other parents. Prematurity-related morbidities were a burden to the VLBW child as well as to the family.