The lived experience of mothering a child with autism: a hermeneutic phenomenological understanding

Autism Spectrum Disorder is a complex developmental disorder with increasing prevalence. Despite the significant role of mothers, often seen as primary caregivers, there is limited understanding of this experience. The purpose of this study was to explore the everyday experience of mothers with children with autism. Accounts of lived experience were collected through research conversations with six mothers and analyzed using van Manen’s (1990) orientation to hermeneutic phenomenology. The main themes include: It Can’t Be Autism, The Womb is Extended, The Locus of Other, and The Womb is Now and is Forever. The findings suggest that mothers experienced a transformation from mother to mother with a child with autism; one that mirrors the transformation from woman to mother (Bergum, 1989). In this transformation, mothers move from suspicion of the potential diagnosis to acceptance that they are mothers with children whose needs define them and potentially, mothers whose wombs are forever extended.

The Role of Experience in the Organization and Refinement of Face Space

Adults code faces in reference to category-specific norms that represent the different face categories encountered in the environment (e.g., race, age). Reliance on such norm-based coding appears to aid recognition, but few studies have examined the development of separable prototypes and the way in which experience influences the refinement of the coding dimensions associated with different face categories. The present dissertation was thus designed to investigate the organization and refinement of face space and the role of experience in shaping sensitivity to its underlying dimensions. In Study 1, I demonstrated that face space is organized with regard to norms that reflect face categories that are both visually and socially distinct. These results provide an indication of the types of category-specific prototypes that can conceivably exist in face space. Study 2 was designed to investigate whether children rely on category-specific prototypes and the extent to which experience facilitates the development of separable norms. I demonstrated that unlike adults and older children, 5-year-olds rely on a relatively undifferentiated face space, even for categories with which they receive ample experience. These results suggest that the dimensions of face space undergo significant refinement throughout childhood; 5 years of experience with a face category is not sufficient to facilitate the development of separable norms. In Studies 3 through 5, I examined how early and continuous exposure to young adult faces may optimize the face processing system for the dimensions of young relative to older adult faces. In Study 3, I found evidence for a young adult bias in attentional allocation among young and older adults. However, whereas young adults showed an own-age recognition advantage, older adults exhibited comparable recognition for young and older faces. These results suggest that despite the significant experience that older adults have with older faces, the early and continuous exposure they received with young faces continues to influence their recognition, perhaps because face space is optimized for young faces. In Studies 4 and 5, I examined whether sensitivity to deviations from the norm is superior for young relative to older adult faces. I used normality/attractiveness judgments as a measure of this sensitivity; to examine whether biases were specific to norm-based coding, I asked participants to discriminate between the same faces. Both young and older adults were more accurate when tested with young relative to older faces—but only when judging normality. Like adults, 3- and 7-year-olds were more accurate in judging the attractiveness of young faces; however, unlike adults, this bias extended to the discrimination task. Thus by 3 years of age children are more sensitive to differences among young relative to older faces, suggesting that young children's perceptual system is more finely tuned for young than older adult faces. Collectively, the results of this dissertation help elucidate the development of category-specific norms and clarify the role of experience in shaping sensitivity to the dimensions of face space.

Interprofessional Collaboration: The Experience of Nursing and Medical Students’ Interprofessional Education

In this hermeneutic phenomenological study, we examined the experience of interprofessional collaboration from the perspective of nursing and medical students. Seventeen medical and nursing students from two different universities participated in the study. We used guiding questions in face-to-face, conversational interviews to explore students’ experience and expectations of interprofessional collaboration within learning situations. Three themes emerged from the data: the great divide, learning means content, and breaking the ice. The findings suggest that the experience of interprofessional collaboration within learning events is influenced by the natural clustering of shared interests among students. Furthermore, the carry-forward of impressions about physician–nurse relationships prior to the educational programs and during clinical placements dominate the formation of new relationships and acquisition of new knowledge about roles, which might have implications for future practice.

Motivation among reluctant readers: Capturing the goal setting experience in the 'Reading Rocks' program

This study explored goal setting among children with reading disabilities. Of particular focus was the goal setting experience of participants in a literacy-based program, titled “Reading Rocks”. Reading Rocks, offered by the Learning Disabilities Association of Niagara Region (LDANR), supports children with reading disabilities to become more confident readers. The program aims to strengthen literacy skills among vulnerable readers. Another essential component of the program targets children’s reading motivation through goal setting, a recognized strategy for increasing motivation. I outline the importance of reading, followed by exploring children’s reluctance to read. Goal setting is examined as an opportunity to increase motivation among reluctant readers. My research included a qualitative case study of one child-tutor pair in the program. I utilized a think-aloud protocol, a photo elicitation interview, and researcher observations to collect my data. Lastly, I triangulated the data to analyze how children in Reading Rocks experience goal setting.

Removing Oneself from the Shadows: A Heuristic Inquiry to Understand the Lived Experience of Epilepsy in Young Adult Women and their Epilepsy Disclosure

Epilepsy is a chronic neurological disorder characterized by recurrent seizures (Stein & Kanner, 2009). The purpose of this study was to understand the essence of being a young woman living with epilepsy using heuristic inquiry (Moustakas, 1990). The research was built upon the assumption that each experience is unique, yet commonalities exist. Five women aged 22 to 28 years living with epilepsy were interviewed. Additionally, the researcher described her life with epilepsy. Participants characterized life with epilepsy as a transformative journey. The act of meeting and interacting with another woman living with epilepsy provided an opportunity to remove themselves from the shadows and discuss epilepsy. Three major themes of seizures, medical treatment, and social relationships were developed revealing a complex view of an illness requiring engaged advocacy in the medical system. Respondents frequently make difficult adjustments to accommodate epilepsy. This study provides a complex in-depth view of life with epilepsy.

Instagram, Social Media, and the "Like": Exploring Virtual Identity's Role in 21st Century Students' New Socialization Experience

Personal technologies and social media use have changed the socialization experience of our 21st century learners. As learners have a new, embodied, virtual identity that is an omnipresent force within their social interactions, this study sought to examine how virtual identity influences student relationships both within and outside of a school context. This study also explored how personal technologies and social media use have influenced learners’ perceptions of their own 21st century learning. Using a qualitative inquiry, purposeful sampling was employed to recruit 6 participants between the ages of 15 to 19 to examine their social networking site use and education experience. Data were collected from single, one-on-one semi-structured interviews in which participants discussed their experiences using social media. Data were also collected from the teens’ personal Instagram accounts, and a personal reflexive researcher’s journal was kept for triangulation of data. Open and axial coding strategies alongside constant comparative methods were used to analyze data. Participants shared how they and their peers use social media, the pressures and expectations from other users, social media’s influence on peer relationships, and how social media influences their choices in the physical realm. All 6 participants explained that their teachers do not talk to them about their social media use, and even offered critiques of the school system itself and its inability to prepare students for the new realities of a digital world. This study concludes that while social media is very influential on students’ socialization, educators should be more concerned about the lack of guidance and support that students receive in school in terms of appropriate social media use and the navigation of virtual identity.

The Experience of (In)Accessibility at University: What Disabled Graduate Students Reveal

Although the number of disabled students entering graduate school has increased in recent years, research pertaining to graduate students with disabilities remains underdeveloped. The purpose of this generic qualitative study is to better understand the experiences of (in)accessibility from the perspectives of three graduate students who self-identify as disabled or as having a disability(s) at one mid-sized university in Southern Ontario. The theoretical orientation was shaped by a social model of disability. The study was focused around the following major research question: What have been the experiences of (in)accessibility for three graduate students who self-identify as disabled or as having a disability(s) at one mid-sized university in Southern Ontario? Subquestions were organized around subcategories, such as (a) experiences related to accessibility, (b) experiences related to inaccessibility, and (c) insights related to future recommendations to enhance accessibility. The study found that (in)accessibility at university was related to (a) specific places on campus, (b) specific people on campus, and (c) the culture of awareness. A variety of educational initiatives were recommended to foster accessible practices and to develop a more accepting and disability-friendly culture on campus. Based on these findings, the Trickledown Effect Model was proposed as a means for promoting accessibility at university.

Sustaining Health Care Practice Change: The Experience of Best Practice Spotlight Organizations Implementing and Sustaining RNAO Best Practice Guidelines

Sustainability of change for improvement initiatives has been widely reported as a global challenge both within and outside health care settings. The purpose of this study was to examine the extent to which factors related to staff training and involvement, staff behaviour, and clinical leaders’ and senior leaders’ engagement and support impact the long term sustainability of practice changes for BPSO health care organizations who have implemented Registered Nursing Association of Ontario’s (RNAO) Best Practice Guidelines. Semi structured interviews with eleven organizational leaders’ from ten health care organizations were conducted to explore the unique experiences, views and perspectives on factors related to staff, clinical leaders and senior leaders and their involvement and impact on the long term sustainability of clinical practice changes within organizations who had implemented Registered Nursing Association of Ontario’s (RNAO) Best Practice Guidelines (BPGs). The interviews were coded and analyzed using thematic content analysis. Further analysis identified patterns and themes in relation to: 1. The National Health Service (NHS) Sustainability Model which was used as the theoretical framework for this research; and 2. Organizations found to have sustained practice changes longer term verses organizations that did not. Six organizations were found to have sustained practice changes while the remaining four were found to have been unsuccessful in their efforts to sustain the changes. Five major findings in relation to sustainability emerged from this study. First is the importance of early and sustained engagement and frontline staff, managers, and clinical leaders in planning, implementation and ongoing development of BPGs through use of working groups and champions models. Second is the importance of ongoing provision of formal training, tools and resources to all key stakeholders during and after the implementation phase and efforts made to embed changes in current processes whenever possible to ensure sustainability. Third is to ensure staff and management are receptive to the proposed change(s) and/or have been given the necessary background information and rationale so they understand and can support the need for the change. Fourth is the need for early and sustained fiscal and human resources dedicated to supporting BPG implementation and the ongoing use of the BPGs already in place. Fifth is ensuring clinical leaders are trusted, influential, respected and seen as clinical resources by frontline staff. The significance of this study lies in a greater understanding of the influence and impact of factors related to staff on the long term sustainability of implemented practice changes within health care organizations. This study has implications for clinical practice, policy, education and research in relation to sustainability in health care.