Beyond the knowledge gap paradigm: the role of psychological empowerment in parents’ vaccination decision

Even though the efficacy and safety of immunization have been widely proven (Plotkin, 2014), an increasing number of parents have refused to vaccinate their children against serious infectious diseases in the past twenty years (Dubé, Gagnon, Nickels, Jeram, & Schuster, 2014). A recent shift in the study of vaccination decision- making has seen scholars moving beyond the idea that mere lack of knowledge could explain why parents decide to opt out of the recommended schedule, showing that making a vaccination decision is a complex cognitive and emotional process where several factors play a role. Variables such as risk perception, anticipated regret or prosocial attitude can potentially contribute to choosing or not choosing a given vaccination (Yaqub, Castle-Clarke, Sevdalis, & Chataway, 2014). The aim of this dissertation, which is based on the Health Empowerment Model (Schulz & Nakamoto, 2013), is to explore and assess the role of vaccination knowledge (as a dimension of vaccination literacy) in parental vaccination decision-making, while studying, at the same time, the implications of parents’ psychological empowerment on the decision about immunizing their child, with a special focus on the measles-mumps-rubella (MMR) vaccination. Six unique studies that employed both qualitative (individual interviews and focus groups) and quantitative (content analysis, survey and experiment) methods are presented, which aim to assess the influence of vaccination literacy and psychological empowerment on vaccination-related outcomes such as intention, while providing a valid and reliable measurement tool for the empowerment construct as well as a context-specific conceptualization. A content analysis (Chapter II) focusing on the arguments cited by users posting online about vaccination shows that a distinction can be made between an anti-vaccination group, a general pro- vaccination group (using diverse arguments supporting vaccination) and a safety- focused pro-vaccination group. The anti-vaccination group appears to be more active than the others and to also use multiple sources (mainly its own experience and media). The findings of an interview study (Chapter III) reveal that parents tend to misinterpret current vaccination recommendations and experience negative outcomes of their low self-perceived competence. The study also shows that parents think that their MMR vaccination decision can have an impact on different levels and that they have a preference for shared-decision making in relation to their child’s healthcare provider. A second qualitative study employing focus group interviews (Chapter IV) shows that parents are concerned with their legal responsibility and issues of freedom with regards to the MMR vaccination decision. A key finding is that parents’ relationship with the pediatrician in terms of trust is crucial to their self-perceived competence, suggesting their preference for a model of autonomy that does not exclude a shared decision-making approach with the child’s healthcare provider. Finally, a distinction emerges between information seekers, avoiders, and passive recipients. A scale is developed and its psychometric properties are evaluated (Chapter V) to provide a valid and reliable tool to measure psychological empowerment in the vaccination decision. The final tool captures parents’ perceived influence of one’s personal and family experience regarding vaccination, their desire not to ask other parents about their experience with vaccinations and their lack of interest in the vaccination opinion of other parents. These elements can be seen as context-specific extensions of the empowerment dimension of self-determination. The findings of an experimental study (Chapter VI) demonstrate that providing accurate information on the vaccination through a smartphone app employing gamification can positively and significantly increase parents’ knowledge and empowerment. Furthermore, providing information in a gamified way also led to a higher intention to vaccinate and higher parental confidence in the decision. Finally, a mixed method study to evaluate the experiment described above (Chapter VII), suggests that parents have a preference for information and opinions, compared to solely being empowered and pushed to look for information. The results recommend that empowering efforts be always accompanied by proper and exhaustive information. On the basis of these findings, this dissertation contributes to understanding parents’ empowerment needs in the vaccination decision, providing new insights to current research that seeks to study the vaccination decision as a complex process. The results of the studies can significantly inform ways to improve not only communication between health professionals and parents on the vaccination topic, but also future public health strategies and policies ultimately aimed at increasing vaccination coverage

A new direction for public understanding of science: toward a participant-centered model of science engagement.

Engaging the public with science is not an easy task. When presented, scientific findings, public health recommendations, and other scientific information filter through the personal values, beliefs, and biases of members of the public. Science communicators must contend with these differences in order to be effective in cultivating a public understanding of science. Given the importance of scientific understanding for living well in a complex world, increasing science understanding through science engagement is imperative. The field of public engagement with science is dichotomized by a public information deficit approach and a contextualist approach. The deficit approach prizes the factual content of science, its epistemic authority, and its communication to the public while the contextualist approach recognizes the sociocultural embeddedness of science in society, how science is received by publics, and how local knowledges intersect with science. I contend both approaches are incomplete, and I put forth a synthesis. My approach, the participant-centered model of science engagement, incorporates the factual content of science and its epistemic authority, but in a way that is sensitive to context. I argue for a deliberative democratic approach to public engagement with science and articulate a model inspired by learner-centered approaches to teaching in the formal education literature. I outline and assess six participant-centered strategies along with recommendations for particular practices associated with each

Emotional Cultures of Anti-Vaccine Websites: The Proliferation of an Unpopular Movement

Emotional Cultures of Anti-Vaccine Websites: The Proliferation of an Unpopular Movement Stephanie A. Eckstrom, M.A. University of Pittsburgh, 2014 Despite growing public criticism, the anti-vaccine movement continues to influence certain parents in their vaccine-related decisions. This study analyzes three different anti-vaccine websites as tools of social movement organizations that are managed by social movement entrepreneurs who seek the proliferation of the anti-vaccine movement’s preferences (McCarthy & Zald 1977). As tools, anti-vaccine websites are spaces where the normative emotional culture of the social movement is reproduced by the purposeful deployment of emotional framing. Incorporating social movement theory of emotional framing aids in the conceptualization of how and why certain parents may engage with the anti-vaccine movement. Emotional framing is the link that connects the movement, participants, and the larger culture in which the movement is embedded. The characteristics of emotional framing that may particularly resonate with participants are those that incorporate larger, symbolic cultural elements as well as elements that speak to the everyday lived experiences of certain parents. As revealed in my analysis, the emotional culture of anti-vaccine websites is characterized by different degrees of rationality, either independent or layered with negative emotions. The emotion of rationality, whether conceptualized as a lack of affect or communicated through credibility or neutrality, is the most commonly deployed emotion. Incorporating rationality, social movement entrepreneurs demonstrate their capacity to frame website content that resonates through cultural compatibility, using broader cultural symbolism. They also frame website content that may resonate with the daily, lived experiences of certain parents by incorporating guilt, persecution, anger, fear and suspicion. Social movement theory provides a structure to understand how emotions link people and movements together. The outcomes of this study provide additional insight into the current relevancy and proliferation of the anti-vaccine movement in the Unites States

Vaccine opposition in the information age: a study on online activism and DIY citizenship

Despite the growing prevalence of insufficient sleep among individuals, we still know little about the labour market returns to sleep. To address this gap, we utilize longitudinal data from Germany and leverage exogenous fluctuations in sleep duration caused by variations in time and local sunset times. Our findings reveal that a one-hour increase in weekly sleep is associated with a 1.6 percentage point rise in employment and a 3.4% increase in weekly earnings. The majority of this earnings effect stems from improvements in productivity, while the number of working hours decreases with longer sleep duration. We also identify a key mechanism driving these effects: the enhanced mental well-being experienced by individuals who sleep longer hours. Vaccination critics have been at the forefront of much recent media commentary, and ever more so after the spread of COVID-19 and the implementation of vaccination programmes to tackle the pandemic. However, vaccination critics had attracted the attention of academics, media commentators and public health institutions in the years preceding the pandemic. My research relies upon data collected pre-pandemic, focusing specifically on online activism targeting routine childhood vaccinations. While seeking to understand internet-mediated vaccine-critical activism, this thesis addresses the following research questions: how do online vaccine critics construct knowledge that feeds into vaccination controversies? What kind of values underlie vaccine critics’ policy demands, and how are these demands advocated for? How do critics understand and represent their collective identities? Finally, and most importantly for my study, how do online vaccine critics engage with their surrounding legal landscapes? Drawing upon an analysis of qualitative data from more than 700 posts linked to six vaccine-critical blogs, collected during nine months of fieldwork informed by an internet-ethnographic approach, I suggest that online vaccine-critical activism needs to be understood as a complex phenomenon embedded in its socio-legal context. While vaccine critics are often depicted as an anti-establishment force, I contend that their relationship with the law in particular is more complex than that. Rather than merely ‘resisting’ the law, vaccine-critical activists mobilise and co-opt different legal discourses and concepts in intricate and sometimes surprising ways. Vaccine-critical activism is an historically persistent phenomenon which if misunderstood risks further alienating current activists and potentially aggravating the issue of vaccine hesitancy. Investigating vaccine critics’ online practices and learning more about their shared worldviews is therefore important (and has become even more so in the light of the SARS-CoV-2 pandemic) in order to frame effective public health communications about vaccine safety

Vaccination Panic in Australia

In 2009 in Australia, a citizens\u27 campaign was launched to silence public criticism of vaccination. This campaign involved an extraordinary variety of techniques to denigrate, harass and censor public vaccine critics. It was unlike anything seen in other scientific controversies, involving everything from alleging beliefs in conspiracy theories to rewriting Wikipedia entries

Educator\u27s Implementation of the Connecticut Guidelines for the Identification and Education of Children and Youth with Autism

The Problem As the number of children with autism needing educational support continues to increase, combined with the limited availability of resources, this study aims to examine how educators responsible for teaching children with autism have experienced implementation of the Connecticut Guidelines for the Identification and Education of Children and Youth with Autism (2005), (Guidelines). At this time there have been no studies done in the State of Connecticut to assess the implementation of the components for effective education of children with autism, as set forth in the Connecticut Guidelines. Method The Connecticut Autism Needs Survey, an on-line self-report survey designed for this study, was used to collect cross sectional data reflecting special education teachers practices and attitudes towards the Connecticut Guidelines for Identification and Education of Children and Youth with Autism. The first three research questions assess participants experience with implementation, level of difficulty implementing and level of importance of the Connecticut Guidelines for Identification and Education of Children and Youth with Autism. To further explore implementation, level of difficulty implementing and importance the data was examined specifically for teachers practice with 17 recommended evidence based practices for students with autism. The responses to the questions were analyzed using descriptive statistics. Three additional research questions address the association between the dependent variables reported on in the first three questions and the predictor variables of (a) years of experience, (b) assignment, (c) place, (d) region of the state, (e) number of students on caseload, (f) percentage of students with ASD on caseload, or (g) personal relationship. The dependent variable for each question and the 7 predictor variables were analyzed using logistic regression. Results The findings reveal 89.5% of respondents were either not familiar with the Connecticut Guidelines or found them difficult to implement. Additionally, the findings suggest an association between a special educator’s use of the Connecticut Guidelines and the specificity of their role and tenure. Teachers who are primarily responsible for students with autism were more likely to use the Guidelines than were teachers who were responsible for providing specialized instruction to students with a range of disabilities. The research found that special education teachers in private schools were nine times less likely to rate the Connecticut Guidelines as difficult to implement than teachers in public schools. The findings suggest teachers with more experience were slightly more likely to implement the Connecticut Guidelines. Interestingly, the findings identified teachers who have a personal relationship were twice as likely to use the Guidelines as those who did not. Three of the most critical evidence-based strategies for educating students with autism: pivotal response training, video modeling, and voice output communication aide had the lowest percentage of implementation and were perceived as not important by teachers. Conclusions The results show the Connecticut Guidelines are not used or viewed as important by the majority of special education teachers in Connecticut. The Guidelines were written 10 years ago and much has changed in the field of autism over that time period. It appears it is time to reexamine and make changes to the Connecticut Guidelines

Autism Literacy: A Rhetorical and Social Inquiry Through Archival Research

Over the past two decades, the term “autism” has become ubiquitous in American culture, with an even bigger effort by activists, advocacy groups, and non-profit/for-profit organizations to “spread awareness” about this supposed epidemic. To better understand the phenomenon of autism awareness, I utilize archival research methods to trace the exchange of autism-related information to its foundation during the 1960s and 1970s. These include the papers of Margie Pitts Hames, the late Atlanta-based Civil Rights attorney, the late radio and film writer Allan Sloane, and a parent-based advocacy organization called the Autism Society of Northwest Ohio. Couched within scholarship of Disability Studies and Literacy Studies, I refer to the exchange and acquisition of such information as Autism Literacy. The project at hand is not a commendation of the increase in autistic rhetorics that tend to stem from a eugenics approach to find “cures,” but is rather a response to the influx in rhetorical strategies that continue to place people with autism at a cultural disadvantage. Due to a nationalist-leaning culture that further isolates people with disabilities though, I argue that the need to understand Autism Literacy is more important than ever. I trace the emergence of Autism Literacy’s more widespread cultural beginnings, which appeared during the 1960s across the U.S. My discussion of these archival findings focus on the rhetorical contexts in which people wrote about autism at the time, as well as their intentions. Such a project also lends itself to the growing need for archival research within Disability Studies conversations in the field of Rhetoric and Composition more broadly

Parenting in the 21st Century

In this Special Issue, we present a collection of articles that cover the unique opportunities and challenges of parenting in the 21st century. We have identified three themes across the articles: managing stress; support for effective parenting; and emphasis on fostering competence for an uncertain future. First, although the studies did not use data to test for differences between cohorts of parents, the results suggested that stress is a normal state for parents today, and especially for certain groups of parents. Second, despite high stress among parents, the articles point at some important support systems for parents in the 21st century. For example, although technology can be a stressor, it can also be a useful tool to enhance the parent-child relationship for parents of adolescents or young adults. Finally, in the third theme, we saw an emphasis on promoting a mix of competencies emphasizing both autonomy and relatedness in children and speculate that parents see these competences as tools to help the child to deal with an uncertain future.Results from this Special Issue illustrate the impact of societal changes on parenting. The findings can be used to develop programs and policies to provide support to diverse parents in handling today’s stressors, ranging from technology to racism to excessive pressures for parental “success”. They also point to important research gaps in understanding the task of parenting in the 21st century

Vaccinating pregnant women: Exploring midwive’s perspectives regarding vaccination in pregnancy in the Waterloo-Wellington Region.

Background: Within the Canadian context midwives play a crucial role in providing prenatal care for pregnant women and this encompasses vaccine recommendations. Although administration of vaccines is outside midwives’ scope of practice, they are considered important in discussing and recommending vaccines, as their medical advice is highly trusted and valued by patients. Vaccination of pregnant women is critical because risk of influenza related morbidity and mortality increases during pregnancy. Despite strong recommendations by medical and public health bodies such as NACI since 2007, influenza vaccine uptake amongst pregnant women remains sub-optimal and well below the recommended target of 80 percent. Prior to the H1N1 pandemic it was estimated that approximately 15% of pregnant women were vaccinated annually against seasonal influenza in Canada. Rates have remained similar in subsequent years despite the significant risks posed for mother and fetus. Despite this knowledge, few studies have been conducted in the Canadian context to specifically investigate the factors that influence the knowledge, attitudes, beliefs and behaviours (KABB) of midwives regarding vaccination in pregnancy. Therefore the unique focus of my project is to specifically investigate the KABB of midwives in the Waterloo-Wellington, Ontario region regarding vaccination during pregnancy. Research Aim and Objectives: To gain a better understanding of the KABB of midwives regarding vaccination during pregnancy. My project will offer data from a region where I hypothesize that midwifery practice is shaped by the preferences of a diverse subset of the population identified as Mennonite. Methods: A qualitative approach was taken using semi-structured in-depth interviews. This study used a qualitative, constructivist design in gathering experiences and stories from midwives to determine their KABB regarding vaccination within their field using semi-structured interviews. The Theoretical Domains Framework was consulted for the formulation of the interview guide as well as for the coding and analysis of data collected. Both deductive and inductive approaches were used to code the data in order to ensure that themes that lie outside the framework will also emerge. The findings from this study will be incorporated into similar and more comprehensive research projects conducted by the Canadian Immunization Research Network (CIRN) focusing on KABB regarding immunization and maternal care providers. Findings from this research will also shed light on the fragmentation and gaps within the field of midwifery and the guidelines and regulations that shape midwifery practice in Canada. Results: The research project explored the KABB of midwives in the Waterloo-Wellington Region and their perceived role in the discussion and recommendation of the influenza vaccination while also capturing general vaccine perceptions. Participants shed light on the personal and systemic barriers that are currently limiting midwives from incorporating vaccine discussion and recommendation into their routine practice and provided potential recommendations on addressing these barriers in practice. More specifically, this project investigated the impact of the Mennonite community’s engagement with health services, such as vaccination and birthing programs through semi-structured interviewing of midwives who provide care to this population. It should be noted however that no such research had investigated this aspect of the Midwifery or Mennonite population previously and these findings are novel. Conclusions: This study has only begun to address the gap in quality qualitative research exploring the KABB of midwives in the Canadian context regarding vaccine discussion and recommendation practices. The research project provides further information and recommendations regarding barriers to the promotion, discussion and recommendation of immunization in midwifery practice in the Waterloo-Wellington Region. Findings may also contribute to developing public health and vaccination promotion services to reach pregnant women in the Waterloo-Wellington Region that share demographic and contextual characteristics as participants in the study. Participants provided suggestions to how vaccine discussion and recommendation can be more effectively incorporated into routine midwifery practice based on their experiences in the current maternal health care system. Implementation of these strategies, however, relies on developing more comprehensive clinical guidelines in midwifery care, therefore it is essential to further assess vaccination in pregnancy from the health care provider perspective and the barriers that are currently preventing promotion of vaccines

The autism diagnostic encounter in action: Using video reflexive ethnography to explore the assessment of autism in the clinical trial

Despite the increasing visibility of autism, this disorder has resisted a consistent and stable diagnostic definition, treatment approaches, and biomedical and genetic attempts to make sense of how it manifests within the body. That this confusion remains despite the enormous biosocial productivity of the category indicates that there is likely a unique set of circumstances, an “epistemic murk” (Eyal et al 2014), in which autism exists, and perhaps thrives. Given there is limited understanding of how clinicians diagnose ASD in practice, especially within the diagnostic encounter of the clinical trial, this thesis focuses on the contention and “epistemic murk” that surrounds autism as the object of the clinical trial and the paradoxical attempts by medicine and the psy-sciences to codify, standardise and quantify this heterogeneous disorder. Using a video-reflexive ethnographic (VRE) approach, I observed and videoed 22 diagnostic sessions with parents and children over two years as part of a randomised double blind placebo-controlled drug trial in a children’s hospital in New South Wales, Australia. Edited clips from these videos were later played back to the clinician in reflexive one-on-one feedback sessions with the researcher, allowing the collaborative analysis of complex diagnostic data. This video data provides a rich, negotiated, embodied and socially nuanced picture of the autism diagnostic encounter in action within the clinical trial. In this context, autism is no longer perceived solely as a set of observable behaviours, but rather a disorder that is firmly located within the brain and its processes. ASD medication, the disorder itself, and the individual ASD brain cannot be properly conceptualised without each other, with each element feeding into a classificatory loop. This data also demonstrates how participants must constantly negotiate between the inherently qualitative nature of the diagnosis in practice and the standardised agenda of the clinical trial, which views disorder as a quantitative deviation from a statistical norm. The thesis argues that during the diagnosis, the clinician must filter, categorise and quantify this complex, inter-subjective, experiential knowledge to fit with what counts as measurable evidence. However, it is behind the scenes that the real labour of the clinical trial occurs. This labour generates data through participants’ value-orientation, their experiences, stories, and corporeal translation of knowledge. This diagnostic work is above all complex, value-laden and qualitative