Knowledge translation and exchange (KTE) is integral to the formation of evidence-informed policy. Prior to the work presented in this dissertation, a significant body of literature existed in the healthcare field regarding research-to-policy KTE; however, little was known about KTE between researchers and policymakers in the Canadian food safety system or the context-specific barriers that influence KTE. A mixed-methods approach was used, grounded in concepts from the healthcare literature, to explore Canadian food safety researchers’ KTE awareness and activities with policymakers, the barriers hindering KTE engagement and success, and timing and informational disparities between research and policy needs that may hinder KTE success. Canadian food safety researcher awareness of and engagement in KTE activities with policymakers was high. However engagement in activities identified as having the greatest potential for KTE success—i.e., collaboration with policymakers at all stages of the research process, provision of syntheses such as systematic reviews, and provision of a searchable database of research findings—was low relative to end-of-research dissemination of findings to policymakers. Several barriers were identified that limited KTE engagement and success from the researcher’s perspective, including an inability to identify relevant policymakers, high policymaker turnover, a lack of resources and support in the research organization, a perceived lack of KTE skills on the part of researchers, and an inability to break free from traditional publish-or-perish research roles. Apparent informational disconnects (i.e., research output not meeting policymakers’ apparent informational needs) were identified that may further hinder KTE and evidence-informed policymaking. While new methodologies, such as systematic review, have been adapted for food safety research, boosting researchers’ potential ability to produce policy-relevant evidence, a cultural shift must occur in research and policymaking organizations, if sustained KTE is to be successful. As well, significant future investment must be made on the part of research organizations and policymakers, if KTE barriers are to be mitigated. Future research should evaluate KTE tools (e.g., sustained linkages between researchers and policymakers, provision of syntheses, provision of access to a database of research findings) to identify specific methods that may facilitate research use in food safety policymaking. / Blake Graham Fellowship, Canadian Institutes of Health Research, Public Health Agency of Canada

The dissertation aims to analyse the problem of informed consent in clinical drug trials. Understanding of the provided information is one of the basic components of a person’s sound and informed decision to participate in a clinical trial. Our research evaluated informedness about clinical trials of patients participating in clinical drug trials in Lithuania, with emphasis on the informedness about key elements of clinical trial design (placebo-control, double-blindness, and randomisation). An anonymous survey of patients participating in clinical drug trials was conducted for the purposes of this study. The results of the study reveal that the legal framework sets the basis for adequate informedness about clinical trials of clinical trial participants, however, patients participating in placebo-controlled clinical trials are insufficiently informed about clinical trials. Patients participating in placebo-controlled clinical trials are better informed about the rights of clinical trial participants than about clinical trial design, however, informedness about design is a more important condition for overall informedness. The majority of placebo-controlled clinical trial participants do not understand at least one of the three key elements of clinical trials design and they tend to interpret the scientific methods used in clinical trials therapeutically. / Disertacijoje analizuojama informuoto asmens sutikimo įgyvendinimo klinikiniuose vaistinio preparato tyrimuose problema. Pateiktos informacijos supratimas yra viena svarbiausių asmens apsisprendimo dalyvauti klinikiniame tyrime sąlygų. Moksliname darbe vertinamas pacientų, dalyvaujančių placebu kontroliuojamuose klinikiniuose vaistinio preparato tyrimuose Lietuvoje (toliau – klinikinių tyrimų dalyviai), informuotumas apie klinikinius tyrimus, akcentuojant informuotumą apie klinikiniuose tyrimuose taikomus mokslinius metodus (placebo kontrolę, dvigubą aklumą, atsitiktinį tiriamųjų grupių sudarymą). Klinikinių tyrimų dalyvių informuotumas buvo tiriamas atliekant anoniminę apklausą. Mokslinio darbo rezultatai parodė, kad teisinis reglamentavimas sudaro prielaidas klinikinių tyrimų dalyvių informuotumui, tačiau jų informuotumas yra nepakankamas. Respondentai buvo geriau informuoti apie klinikinių tyrimų dalyvių teises nei apie klinikinių tyrimų metodologiją, tačiau informuotumas apie klinikinių tyrimų metodologiją yra svarbesnė prielaida bendram informuotumui. Dauguma klinikinių tyrimų dalyvių nesuprato vieno ar daugiau iš trijų pagrindinių klinikiniuose tyrimuose taikomų mokslinių metodų (placebo kontrolės, dvigubo aklumo, atsitiktinio tiriamųjų grupių sudarymo) ir buvo linkę suteikti jiems terapinę reikšmę. Tyrimo rezultatai sudaro prielaidas kryptingam klinikinių tyrimų dalyvių informuotumo gerinimui, informacijos apie klinikinius tyrimus viešinimui.

Disertacijoje analizuojama informuoto asmens sutikimo įgyvendinimo klinikiniuose vaistinio preparato tyrimuose problema. Pateiktos informacijos supratimas yra viena svarbiausių asmens apsisprendimo dalyvauti klinikiniame tyrime sąlygų. Moksliname darbe vertinamas pacientų, dalyvaujančių placebu kontroliuojamuose klinikiniuose vaistinio preparato tyrimuose Lietuvoje (toliau – klinikinių tyrimų dalyviai), informuotumas apie klinikinius tyrimus, akcentuojant informuotumą apie klinikiniuose tyrimuose taikomus mokslinius metodus (placebo kontrolę, dvigubą aklumą, atsitiktinį tiriamųjų grupių sudarymą). Klinikinių tyrimų dalyvių informuotumas buvo tiriamas atliekant anoniminę apklausą. Mokslinio darbo rezultatai parodė, kad teisinis reglamentavimas sudaro prielaidas klinikinių tyrimų dalyvių informuotumui, tačiau jų informuotumas yra nepakankamas. Respondentai buvo geriau informuoti apie klinikinių tyrimų dalyvių teises nei apie klinikinių tyrimų metodologiją, tačiau informuotumas apie klinikinių tyrimų metodologiją yra svarbesnė prielaida bendram informuotumui. Dauguma klinikinių tyrimų dalyvių nesuprato vieno ar daugiau iš trijų pagrindinių klinikiniuose tyrimuose taikomų mokslinių metodų (placebo kontrolės, dvigubo aklumo, atsitiktinio tiriamųjų grupių sudarymo) ir buvo linkę suteikti jiems terapinę reikšmę. Tyrimo rezultatai sudaro prielaidas kryptingam klinikinių tyrimų dalyvių informuotumo gerinimui, informacijos apie klinikinius tyrimus viešinimui. / The dissertation aims to analyse the problem of informed consent in clinical drug trials. Understanding of the provided information is one of the basic components of a person’s sound and informed decision to participate in a clinical trial. Our research evaluated informedness about clinical trials of patients participating in clinical drug trials in Lithuania, with emphasis on the informedness about key elements of clinical trial design (placebo-control, double-blindness, and randomisation). An anonymous survey of patients participating in clinical drug trials was conducted for the purposes of this study. The results of the study reveal that the legal framework sets the basis for adequate informedness about clinical trials of clinical trial participants, however, patients participating in placebo-controlled clinical trials are insufficiently informed about clinical trials. Patients participating in placebo-controlled clinical trials are better informed about the rights of clinical trial participants than about clinical trial design, however, informedness about design is a more important condition for overall informedness. The majority of placebo-controlled clinical trial participants do not understand at least one of the three key elements of clinical trials design and they tend to interpret the scientific methods used in clinical trials therapeutically.

Through narrative, poetic, and visual inquiry, this arts-informed thesis reclaims the silenced voices and life histories of both our elderly farmers and of our elderly architecture--the barn. Using the life history model of research (Knowles & Cole, 2001), I engage in informal "chats" (Archibald, 2008, p. 377) with my elderly father to seek out the meaning and significance of his life spent on the farm--and his emotional response to the taking down of his two bank barns after the sale of his farm. What results is a "responsive" (Knowles & Cole, 2001, p. 10) representation of data, an alternative type of meaning and knowledge that is known as arts-informed qualitative representation.

In this mixed-methods study I report on a three-part investigation related to reading intervention at Grade 1 in one Ontario school board during the 2009-2010 school year. First, I report the results that Peer Assisted Learning Strategies (PALS) had on the reading outcomes for all Grade 1 students (n = 436) in terms of sex, aboriginal status, and at-risk status. Second, I use progress monitoring benchmark data to show how students unresponsive to instruction may have benefitted from additional instruction generated from monthly data-informed In-School Team meetings. Third, I report on educators’ perceptions of how monthly data-informed In-School Team meetings influenced their knowledge, confidence, and willingness to plan additional reading interventions for students persistently at-risk for reading failure. Findings indicate that compared to previous years, when PALS was not used, students in this study made significantly greater gains in reading scores. Boys made similar gains to girls, First Nations students made similar gains to non First Nations students, and at-risk students closed the achievement gap slightly with their typically-achieving peers. For students who did not make adequate progress in reading throughout the year a logistic regression analysis of the data indicates that the best predictor of at-risk status is not a student’s sex or First Nations status, but their letter sound fluency and word identification fluency scores at the beginning of the school year. Findings also indicate that the slope of improvement in reading scores for nonresponders begins to increase once In-School Team meetings begin. Educators’ perceptions of how the monthly In-School team meetings influenced practice differed according to the perceived role that each held of his or her position, and according to the level of involvement, training, and access that each had to the data used in this study. The more professional development that educators had in the theory, use, and application of progress monitoring data the more likely they were to report that they were willing to use it to inform their practice. Likewise, the more access that educators had to the data in terms of collecting, viewing, and interpreting it, the more likely they were in reporting knowledge, confidence, and willingness to use it to plan additional interventions for students. / Thesis (Ph.D, Education) -- Queen's University, 2011-09-13 10:03:09.664

Through narrative, poetic, and visual inquiry, this arts-informed thesis reclaims the silenced voices and life histories of both our elderly farmers and of our elderly architecture--the barn. Using the life history model of research (Knowles & Cole, 2001), I engage in informal "chats" (Archibald, 2008, p. 377) with my elderly father to seek out the meaning and significance of his life spent on the farm--and his emotional response to the taking down of his two bank barns after the sale of his farm. What results is a "responsive" (Knowles & Cole, 2001, p. 10) representation of data, an alternative type of meaning and knowledge that is known as arts-informed qualitative representation.

The incidence of unintentional childlessness in women who have, as popular comment puts it, 'left it too late', is rising markedly in many western nations, yet the experience is not well understood. This thesis focuses on issues of fantasy, loss, and grieving in the experience of 26 New Zealand women in their 30s and 40s who are what Cannold (2005) has termed 'circumstantially childless'; that is women who expected to have children but find themselves at the end of their natural fertility without having done so for - at least initially - social rather than biological reasons. I explore the conscious and unconscious dimensions of the fantasies that many of the women interviewed have about themselves as mothers in relation to a child or children. I argue that these fantasies have their origins in these women's trans-subjective relationship with their mothers before birth, the intersubjective relationship after birth, and the mutual overlapping of their unique psychobiography and the social worlds in which they have become adults. Circumstantial childlessness entails a loss of the potential to embody their fantasies about themselves as mothers. The thesis uses psychoanalytic and contemporary grief theories to explore their experience of loss and grieving, and their adaptation of their fantasies when the potential to embody them has passed. It calls for a reconceptualization of maternal subjectivity to encompass the creative and satisfying alternative ways that women who do not have children embody 'mother' in their lives. The study's psychoanalytically-informed psychosocial methodology entailed the innovative use of participant-produced drawings, and the development of a method of recording protocols - based on Bollas'(2007) notion of a symphonic score - to systematically record non-linguistic elements of the texts (such as sighs, hesitations, laughter, repetitions, and tears) across the range of the semi-structured individual and group interview transcripts. In this respect, the thesis contributes to investigations of social life that move beyond the limits of conventional text-based methods of inquiry and interpretation.

Many men seek to address their substance use issues in a variety of resources including hospitals, detoxification centres, treatment programs, supportive recovery housing and more. How policy is constructed and implemented has a direct impact on how effectively clients achieve their recovery goals. There is little literature on the topic of how policy is developed and implemented in residential addictions services. What research could be found did not include the voices of the recipients of these services. The goal of this research is to gain insight into the experiences of people accessing residential addictions services to inform policy development and implementation. Thorne’s (2008) interpretive description was the methodology used to guide this study. Eleven qualitative interviews with men accessing residential addictions services were conducted. Several themes were identified and an interpretive description was made. Eight theories are proposed. Several recommendations were formulated. Three suggestions for future research considerations are discussed. / Graduate / 0452 / mark_s@hotmail.ca

Purpose: Patients’ perspectives of informed consent for chiropractic care have not been investigated. This study explored how patients of chiropractors perceived the exchange of risk information during informed consent. Methods: Interviews were conducted with 26 participants, recruited from chiropractic clinics. Interview transcripts were analyzed using a constant comparative method of analysis. Findings: Participants experienced informed consent as an on-going process where risk perceptions were shaped throughout four distinct stages. In the first stage information acquired prior to arriving at the clinic for treatment shaped perceptions of risk. In the second stage participants assessed the perceived competence of the practitioners. Participants then signed the consent form and discussed the risks with t heir practitioner. Finally, they communicated with their practitioners during treatment to ensure their pain threshold was not crossed. Conclusion: These findings suggest that patients perceive informed consent as a social process involving on-going communication with their practitioners.

This thesis focuses on expectant parents’ experiences and needs when soft makers are detected at mid-trimester ultrasound, resulting in an unexpected assessment of risk for fetal anomalies. The thesis also describes the prevalence of ultrasonographic fetal soft markers and the incidence of Down syndrome in a low-risk population of 10,535 pregnant women with a total of 10,710 fetuses, as well as the risk of invasive prenatal diagnostics in conjunction with the detection of soft markers. Finally, the thesis aims to explore the value of a web-based patient decision aid (DA) in facilitating informed decision making regarding routine fetal screening for anomalies and the fathers’ role in decision making regarding prenatal screening. A prospective observational study was conducted between 2008–2011 to investigate the prevalence of ultrasonographic fetal soft markers at second trimester screening. During this time period, 12 women and 17 men were interviewed about their experience when soft markers were detected. Based on the results of these interviews, a web-based decision aid (DA) to enhance expectant parents’ decision-making concerning fetal screening was developed and a trial initiated to test its utility. Interviews were conducted with 17 women who received access to the DA, 11 who had chosen to use the DA and six who had not used it. All interview studies were analysed using systematic text condensation (STC) developed by Malterud. Soft markers were detected in 5.9% of the fetuses at mid-trimester ultrasound, whereof 5.1% were isolated. All soft markers showed a positive likelihood ratio (LR+) for DS; however, the association was only statistically significant for the collapsed category ‘any marker’ (isolated, multiple or combined with anomaly), not for isolated markers. An almost 24-fold increase of invasive diagnostic testing was shown in all women, including those with a low estimated risk for aneuploidy, i.e. < 1/200 (paper III). The results from interviews showed that the finding of soft markers created much anxiety and indicated that both women and men lacked awareness of the potential of the ultrasound examination (papers I and II). The results also showed that the men were actively engaged in decision making not only by supporting their partners, but also considered their own values and needs regarding these issues (paper II). It was also evident that women wanted their partners to be engaged in decisions regarding fetal diagnostics (papers I and IV). The web-based patient DA was able to initiate a process of conscious decision making in pregnant women, as a result of their interaction with the tool. The DA allowed for clarification of women’s thoughts and priorities and helped them to understand the significance of the screening result and providing a basis for making informed decisions regarding fetal screening (paper IV).