BACKGROUND:Available measures of patient-reported outcomes for complementary and alternative medicine (CAM) inadequately capture the range of patient-reported treatment effects. The Self-Assessment of Change questionnaire was developed to measure multi-dimensional shifts in well-being for CAM users. With content derived from patient narratives, items were subsequently focused through interviews on a new cohort of participants. Here we present the development of the final version in which the content and format is refined through cognitive interviews.METHODS:We conducted cognitive interviews across five iterations of questionnaire refinement with a culturally diverse sample of 28 CAM users. In each iteration, participant critiques were used to revise the questionnaire, which was then re-tested in subsequent rounds of cognitive interviews. Following all five iterations, transcripts of cognitive interviews were systematically coded and analyzed to examine participants' understanding of the format and content of the final questionnaire. Based on this data, we established summary descriptions and selected exemplar quotations for each word pair on the final questionnaire.RESULTS:The final version of the Self-Assessment of Change questionnaire (SAC) includes 16 word pairs, nine of which remained unchanged from the original draft. Participants consistently said that these stable word pairs represented opposite ends of the same domain of experience and the meanings of these terms were stable across the participant pool. Five pairs underwent revision and two word pairs were added. Four word pairs were eliminated for redundancy or because participants did not agree on the meaning of the terms. Cognitive interviews indicate that participants understood the format of the questionnaire and considered each word pair to represent opposite poles of a shared domain of experience.CONCLUSIONS:We have placed lay language and direct experience at the center of questionnaire revision and refinement. In so doing, we provide an innovative model for the development of truly patient-centered outcome measures. Although this instrument was designed and tested in a CAM-specific population, it may be useful in assessing multi-dimensional shifts in well-being across a broader patient population.

African American women (AAW) are at a high risk for type 2 diabetes, a debilitating and potentially fatal disease for which there is no cure. The purpose of this study was to extend the research of Mosca et al. (2012) by examining the relationship between caregiver status and self-reported health status for AAW 18 years or older diagnosed with type 2 diabetes. The chronic care model (CCM) provided the theoretical framework for this study. The CCM promoted routine care for patients with chronic illnesses to migrate from acute care to proactive, planned, and risk-based protocols. A binomial logistic regression investigated the relationship between caregiver status, categorized as paid or unpaid, and self-reported health status, which was dichotomized as either good to excellent health or poor to fair health. There was a statistically significant relationship between primary caregiver status and self-reported health status among AAW diagnosed with Type 2 diabetes after controlling for age, education, and marital status (p < .004). Based on the fitted binomial logistic regression model, there were 186 cases of AAW with type 2 diabetes; having a paid caregiver was associated with a lower odds of having good to excellent health (OR = 0.294). About 12.3% of the variance in self-report health status was attributable to caregiver status. Overall, 82.6% of predictions were accurate. Nearly all participants required frequent assistance from a caregiver in the preceding 12 months. These findings suggest a critical need for healthcare service providers to educate caregivers as a means to deliver post-acute care to AAW diagnosed with type 2 diabetes, consistent with the CCM.

<p>This thesis deals with the polyphonic and argumentative functions of the French negation marker, ne, in editorial texts from the daily press. The concept ‘polyphony’ relates to the presence of multiple voices within one and the same utterance. According to this view, negation triggers a subdivision of an utterance in two points of view. Thus the sentence Sweden will not be a part of the monetary union can be divided in two points of view, the underlying ‘Sweden will be a part of the monetary union’, and the explicit ‘Sweden will not be a part of the monetary union’.</p><p>First, I study the polyphonic structure of negative utterances, notably their division in two points of view, by taking into account their specific linguistic features. This is done so as to identify the relevant linguistic criteria that determine the polyphonic interpretation of the negation. The study demonstrates that contextual elements, including pragmatic connectors, presuppositions contrastive elements, and several other devices constitute the primary source of polyphonic markers.</p><p>Negation is furthermore approached from a textual perspective. I explore how the two opposite points of view that are associated with negation form polyphonic sequences with other points of view carrying the same semantic content, and how these dynamic points of view are associated to the different discourse beings that are found in the newspaper article. I found that these sequences often embrace the central polemic theme of the article and, also, that the polyphonic function is not restricted to the negative utterance but constitutes an element that ensures textual and argumentative coherence. These two analyses are carried out within Jean-Claude Anscombre’s and Oswald Ducrot’s Theory of Structural Argumentation, which has recently been formalised by Kjersti Fløttum, Coco Norén and Henning Nølke.</p><p>Finally in this thesis, I analyse the relation between the discourse beings associated with the negative utterance and real beings that exist outside the text, and then consider what rhetorical implications that correspondence or no correspondence has on the polyphonic interpretation of the negation. I also examine whether polyphonic negation can be considered to be a feature of newspaper editorials that identifies these texts as a genre. This study shows that the locuteur, the discourse being responsible for the enunciation of the negative utterance on a textual level, links to the real being, the editorial writer, who then refutes points of view associated to other discourse beings, often by use of nominalizations that refer to community voices. The locuteur also intrudes into an argument or claim, and refutes it in the name of a community or an authority.</p><p>By defining genre, as does the media researcher Patrick Charaudeau, as a correspondence between the constraints imposed by the discursive situation and the constraints imposed by the discursive features, and by considering that one of the editorial’s constraints is to persuade its readers, this study shows that the phrasal negation ne in its polyphonic function, constitutes a distinguishing feature in the genre of editorials. The refutations that are made by an editor constitute a distinctive argumentative strategy since it permits the editorial writer to present external points of view in order to refute them and thereby impose his or her own, subjective point of view.</p>

Hintergrund: Schwindel ist ein häufig vorgetragenes Symptom beim Hausarzt. Seine erhöhte Vergesellschaftung mit Ängstlichkeit und Depressivität ist aber bisher zu wenig untersucht worden, ebenso wenig ist dieser Zusammenhang Gegenstand der hausärztlichen Behandlung von Schwindelpatienten. Zielstellung: Kommen unbekannte psychische Hintergründe in Kombination mit Schwindel im hausärztlichen Patientengut häufiger vor als ohne Schwindel? Ergeben sich daraus als Konsequenz unterschiedliche Versorgungsformen durch den Hausarzt? Wie verhält es sich mit deren subjektiven Gesundheitszustand, dem Erfolg der hausärztlichen Behandlung, dem ihnen entgegengebrachten Verständnis und der Häufigkeit der Arztbesuche der Betroffenen? Studiendesign: Prospektive Multicenterstudie in der Allgemeinpraxis Untersuchungsregion: Zehn Hausarztpraxen in Halle a.d. Saale und Nordsachsen/ Leipzig im städtischen und ländlichen Einzugsbereich, welche von Fachärzten für Allgemeinmedizin geführt wurden. Methodik: Die Studie untersuchte insgesamt 590 zufällig am Untersuchungstag eintreffende Patienten in jeweils einer von insgesamt zehn Hausarztpraxen. Die Ausprägung von Schwindelbeschwerden und eventuell vorhandene Merkmale von Ängstlichkeit und Depressivität beim jeweiligen Patienten wurden mit Elementen des Gießener Beschwerdebogens 24 und der Hospital Anxiety and Depression Scale (deutsche Version) untersucht. Ergebnisse: Die Patienten wurden in eine Gruppe mit relevanten (29,7%, n=175) und in eine Gruppe ohne relevante Schwindelbeschwerden (70,3%, n=408) eingeteilt (Cut off >=8 nach GBB 24). Die Gruppe mit relevantem Schwindel wies häufiger Merkmale für Ängstlichkeit (p<0,001) und Depressivität (p<0,001) in allen Altersgruppen auf, zeigte sich unzufriedener mit ihrem Behandlungserfolg (p=0,004), schätzte ihren aktuellen Gesundheitszustand schlechter ein (p<0,001) und konsultierte ihren Hausarzt in den letzten zwölf Monaten häufiger (p=0,020). Sie stellten sich nach ICPC-2 häufiger wegen neurologischer (p<0,001), psychologischer (p=0,026) und unspezifischer Beschwerden (p<0,001) vor. Sie erhielten mehr Diagnosen aus den ICD-10-Kapitel V (Psychische und Verhaltensstörungen) (p=0,030). Diese Patienten waren nach HADS-D auch häufiger psychisch auffällig (p<0,001). Relevanter Schwindel kam bei Frauen aller Altersgruppen häufiger vor als bei Männern (p<0,001). Dennoch ergaben sich keine Behandlungsunterschiede durch die Hausärzte zwischen beiden Gruppen (p=0,101 bis 0,930 je nach ärztlicher Maßnahme). Schlussfolgerung: Schwindelpatienten weisen häufger Ängstlichkeit und Depressivität auf, welche den Schwindel unterhalten. Dieser Zusammenhang sollte in der Sprechstunde bedacht werden. Die psychischen Hintergründe sollten vom Hausarzt aufgedeckt und behandelt werden. Dadurch könnte der Schwindel und damit der subjektive Gesundheitszustand der betroffenen Patienten verbessert und die Inanspruchnahme des Gesundheitswesens verringert werden.

This dissertation investigates the expression of the indirect evidential subdomain in two languages in contact, i.e. the northern variety of Central Aymara and the variety of Spanish spoken in La Paz (Bolivia). For this aim, the study uses first-hand data collected in La Paz and El Alto (Bolivia) during 2014 and 2015. Data was elicited through: the “Family Problems Picture” task (San Roque et al. 2012), formulated by the members of the Max Planck Institute for Psycholinguistics and created specifically for the activation of cognitive categories such as evidentiality and mirativity; the “Pear Story” designed for Wallace Chafe, professor at the University of California, to collect narrative texts that show how humans perceive, elaborate and verbalize experience; and, finally, personal narratives, traditional narratives and interviews. Thirty-three recordings (12h 48’) of 48 Spanish-Aymara bilingual speakers (17 males, age range: 18-64) were fully transcribed and annotated. The resulting corpus consists of 33 transcriptions of which 14 are in Aymara (c. 19 154 words), whereas 19 are in Spanish (c. 46 245 words). The dissertation is built around four research questions. First, the dissertation shows the functions of the forms identified in the data in both languages. The study identifies for each form both evidential and non-evidential functions. Indirect evidential functions are systematically analyzed and classified by combining Willett’s (1988) and Aikhnvald’s (2004) classifications. The analysis shows evidential functions of forms that have not been previously studied as such, i.e. digamos and diciendo in Spanish and sañani and sapxi in Aymara, but it also reveals unnoticed evidential functions for previously described forms. Second, the dissertation provides a clear view of the relationship between the evidential and the epistemic modal domain involved in the use of the forms identified. Two types of correlation are found. Both languages, indeed, show forms that only point out the way in which speakers acquired information and forms where the two domains overlap. Third, the dissertation investigates speakers’ epistemic stance, in terms of commitment, towards information involved in the use of the evidential forms identified. The study shows that the forms which convey merely evidential information express mainly a medium-high commitment degree, whereas the forms in which the distinction between the evidential and the epistemic modal domain is blurred indicate a low degree of commitment. Forth, the dissertation sheds light on the relationship between the expressions of the indirect evidential subdomain in the two languages. The study proposes a quantitative and qualitative analysis of the evidential types and subtypes in both languages. The results show a high degree of convergence between the two languages, suggesting also situations of influence of one language on the other.

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

In this thesis we develop methods for dealing with missing data in a univariate response variable when estimating regression parameters. Missing outcome data is a problem in a number of applications, one of which is follow-up studies. In follow-up studies data is collected at two (or more) occasions, and it is common that only some of the initial participants return at the second occasion. This is the case in Paper II, where we investigate predictors of decline in self reported health in older populations in Sweden, the Netherlands and Italy. In that study, around 50% of the study participants drop out. It is common that researchers rely on the assumption that the missingness is independent of the outcome given some observed covariates. This assumption is called data missing at random (MAR) or ignorable missingness mechanism. However, MAR cannot be tested from the data, and if it does not hold, the estimators based on this assumption are biased. In the study of Paper II, we suspect that some of the individuals drop out due to bad health. If this is the case the data is not MAR. One alternative to MAR, which we pursue, is to incorporate the uncertainty due to missing data into interval estimates instead of point estimates and uncertainty intervals instead of confidence intervals. An uncertainty interval is the analog of a confidence interval but wider due to a relaxation of assumptions on the missing data. These intervals can be used to visualize the consequences deviations from MAR have on the conclusions of the study. That is, they can be used to perform a sensitivity analysis of MAR. The thesis covers different types of linear regression. In Paper I and III we have a continuous outcome, in Paper II a binary outcome, and in Paper IV we allow for mixed effects with a continuous outcome. In Paper III we estimate the effect of a treatment, which can be seen as an example of missing outcome data.

The rapid growth in opioid therapy for non-cancer pain has occurred without an adequate appreciation of the consequences of this growth. Few studies provide patient-centered evidence that can be used to inform the current proposed standards for efficacious (safe and effective) opioid prescribing in non-cancer pain. Furthermore, different terms may be used interchangeably in the literature to refer to opioid-taking behaviors, resulting in imprecise or vague interpretation of existing evidence. We therefore sought to explore patterns of opioid-taking behavior and their biopsychosocial-spiritual determinants in African-American adults with sickle cell disease (SCD). Many questions surround opioid use for non-cancer pain, but little has been published about behavioral patterns of taking opioids in these conditions. The main objective of this study was to develop a disease-specific scale for describing prescribed opioid taking in patients with sickle cell disease (SCD). As part of a multiphase, mixed-methods study, we used an adaptation of several published methods to construct 9 sequential, chronological steps for developing a new scale. We report here wide-ranging quantitative and semi-structured, qualitative interviews of 13 male and 11 female African-American adults with SCD, average age 36 years, from various socioeconomic and educational levels. We used grounded theory, priori and posteriori procedures to analyze the qualitative data, and to conduct an appraisal of translational validity. Scale development results have led to inclusion in the draft scale of new concepts namely momentary medication-taking behavior. The scale also captures concrete patterns of adherence for as-needed and scheduled medication and allows for several discovered conceptual domains that explain observed opioid-taking behaviors. These concepts challenge the current theories and models of medication-taking behavior and adherence. In summary, we found that contextual factors may drastically affect opioid-taking behaviors. Together, These uncovered phenomena raise new hypotheses that may challenge current theories and models of medication-taking behaviors and methods of assessing adherence. These hypotheses call for a new round of research on opioid-taking behavior, and need to be rigorously tested in future research

Cette thèse a pour objet de rapprocher la notion de « style » telle qu’elle est employée d’une part en linguistique et de l’autre en sociologie. Elle veut apporter un éclairage sur le rôle que peut jouer le linguiste dans la compréhension des phénomènes sociaux. Pour cela, une enquête par entretiens nous a permis de constituer un corpus étoffé, comportant une grande variété d’exemples, rendant ainsi possible l’analyse de styles sociaux et discursifs dans leur diversité. A cet effet, nous mobilisons la notion de « style », à l’origine réservée à l’écriture, mais qui, aujourd’hui, connaît un usage extensif. Nous distinguons deux acceptions récurrentes, esthétiques et pragmatiques, à partir desquelles nous proposons notre propre définition applicable à des productions langagières orales. Le concept sociologique de « style de vie » constitue un élément central de ce travail. Ce concept définit le style de vie à partir de « libres choix » des individus. Nous interrogeons le rapport entre le discours direct et le « style », envisagé d’un point de vue sociologique (un « vecteur » de style) ou linguistique (un procédé stylistique). Par ailleurs, nous analysons les structures langagières « préformées » ou « préfabriquées » dont l’emploi relève, comme l’utilisation du discours direct, d’un procédé stylistique, car c’est le locuteur qui choisit librement ce mode d’expression. Nous plaidons ainsi pour une meilleure prise en compte des phénomènes langagiers par la sociologie, en particulier celle des styles de vie, le linguiste contribuant aussi à la compréhension de l’Homme en tant que locuteur et acteur social. / The objective of this doctoral dissertation is to bring together the different ideas of “style,” as employed in linguistics and sociology. Its intention is to shed light on the role that the linguist can play in understanding social phenomena. To do so, my interview-based investigation constitutes a large and various study, making possible an analysis of diverse social and discursive styles. To this effect, I’ve employed the concept of “style,” originally confined to writing, but which currently has an extensive use. I distinguish two recurrent meanings, the aesthetic and pragmatic, from which I propose my own definition applicable to oral language productions. The sociological concept of “life style” constitutes a central element of this work. This concept defines life style as based on the free choice of individuals. I interrogate the relationship between direct discourse and style envisioned from a sociological point of view (a “vector” of style) or a linguistic perspective (a stylistic process). Moreover, I analyze “preformed” or “prefabricated” language structures whose use is deployed as a direct discourse from a stylistic process, for it is the speaker who can freely choose this mode of expression. This dissertation thus argues for a better understanding of language phenomena through sociology, in particular thatof life styles. The linguist contributes also to human understanding while being a speaker and social actor.

It is generally assumed that in order to learn a language, learners need to master reading, writing, listening and speaking. However, merely possessing the skills and abilities to communicate is not sufficient; one must have the will to use the language. In order to formulate a model that can accurately describe the willingness to communicate, Mac-Intyre et al. (1998) formulated a model that attempts to do just this. The goal of this study is to verify the veracity of the Willingness to Communicate (WTC) model in terms of to what extent students’ self-reported WTC correlate with their actual WTC in the class-room. To accomplish this, this study utilized interviews with Swedish EFL students in southern Sweden, based on the WTC framework, and classroom observation in order to collect data on said connection. The results of this study showed that self-reported WTC and actual WTC do not necessarily correlate with one another; for some students, they spoke English more than they reported, some spoke less, and others’ WTC reflected their self-assessed WTC. Although the WTC model could account for the students’ actual WTC, it could not account for this discrepancy. However, this discrepancy may not be due to the model itself, but rather to the situational factors that, to a certain degree, influenced the outcome of this study. Based on this study, teachers are recommended to consistently speak English, as this raises the students’ own WTC, and to encourage English usage among students themselves. For future research, it is therefore recom-mended that non-linguistic factors be taken into account, possibly through factor analysis, in order to produce more nuanced data, as well as conducting a longitudinal study.