Acknowledging mother's lived experience of raising a child with Autism : a phenomenological inquiry

Autism is one of those human ambiguities that forces vigilant open-mindednesssometimes this open-mindedness comes without choice, for example when you become the mother of a child with autism. Recent reports indicate that Pervasive Developmental Disorders affect 1 in 150 children (Centre for Disease Control and Prevention, 2007). This also means that there are many families caring for children with autism. The purpose of this research was to explore the day to day lived experiences of mothers caring for a child with autism. With a drastic increase in children diagnosed with autism, and very little research on mothers themselves, assisting in articulating lived experiences from mothers themselves seemed like an acceptable first step. Mothers were asked to journal for a period of one month, once a week, as well as participate in a focus group. Findings from both of these techniques were analyzed using underpinnings from Amelio Giorgi and Max van Manen. General findings indicate that mothers present poignant narratives about living with their child. It becomes clear that mothers are stressed, and live a complicated and often contradictory existence. Many days are fraught with struggle, anticipation, watchful eyes, judgment and guilt. There is a constant battle waging; the one within themselves, and the one with an uninformed and uncooperative public. Given that this research contributes to an extremely small body of qualitative research on mothers, future research should continue to gain insight from mothers, without classifying or categorizing their words. Their words speak volumes. Professionals may know autism, but mothers know their children.

Retrospective on the Experience of Parental Pressure and Support by Male Participants that Withdrew from Competitive Youth Hockey: A Phenomenological Investigation

The purpose of this study was to gain an in-depth understanding of the lived experiences of parental pressure and support for males who withdrew from competitive youth hockey. A phenomenological approach was used to explore this phenomenon and develop meaning from the participants' experiences. Data for this study was collected by conducting one in-depth interview with each of the seven participants. Fourteen themes emerged as a result of the data analysis. These themes were grouped into three clusters: (1) Description of parental involvement: “I want them to be there and help me”; (2) Perceived impacts of parental involvement: “I felt like he actually cared”; and (3) Impact of parental involvement on commitment: “I kind of miss hockey now”. The descriptions provided by the participants in this study, and the themes that emerged, offer insight into what it is like for young males to experience parental involvement in competitive youth hockey.

Utilizing a Phenomenological Approach to Examine the Experience of Sexuality for Women Concerned about Urinary Incontinence following Spinal Cord Injury

Sexuality after spinal cord injury (SCI) is a complex issue that is influenced by a number of social, psychological and physiological factors, one of which is urinary incontinence (UI). Using a phenomenological approach, seven mixed methods interviews combining both the interview guide and standardized open-ended approaches were conducted to examine the experience of sexuality for women who are concerned about UI following SCI. Sexual function was one of the top priorities for the women after SCI, and UI was one of the main concerns the women had regarding sexuality. The findings of this study demonstrate that various dimensions of intimacy and the sexual experience as a whole were affected by UI, and the women discussed both physical and psychological concerns. The main issues regarding sexuality included concerns related to relationships, frustrations with limited sexual activities and the difficulty of being sexually satisfied, the number of unanswered questions and concerns, and a fear of being hurt or injured while participating in sexual activities. The main concerns regarding UI were embarrassment, the work and inconvenience involved with the clean-up of UI, bladder infections, the lack of accessible washrooms, and the negative effects of UI medications. When examining sexuality and UI together, the major issues were the constant comparison to the way things were before SCI, as well as the new concerns that the women did not have to worry about previously, worrying about how their partner would react if UI were to occur during sexual activity, and the impact of their own feelings toward UI on sexuality, a connection between pleasurable sexual sensations and UI as well as difficulty differentiating between the sensation of UI with the sensation of UI, dealing with infected urine during sexual activity, having to discuss UI with a new potential sexual partner, and a fear of rejection. Other identified issues included those related to body image, a lack of resources, Doctors who were inadequately educated regarding SCI, and issues related to both having and raising children. There is a significant shortage of information available for women with SCI to use as a resource regarding sexual function in general, and sexual function as it relates to UI. It is necessary that future work focus on creating resources to assist in this area, and that the dissemination of those resources becomes both appropriate and effective. Addressing sexual function and UI which are among the top concerns for this population has the opportunity to greatly improve quality of life (QOL) for these individuals.

A Mind of its Own: The Lived Experience of Adult Students who are ADHD

Despite the growing trend towards recognizing that attention deficit hyperactive disorder occurs beyond childhood, the experience of adult students who are ADHD remains little researched or understood. Given the losses in efficiency and productivity in academic performance from adult ADHD, researching ADHD’s experiential aspects is significant for both educators and students in its potential to develop better strategies for accommodating those with the disorder. This study used hermeneutic phenomenology and existential psychology to describe the lived experience of adult students who are ADHD. Five adult students participated in the study, which involved two in-depth conversations with guiding questions such as: What is it like to be ADHD?; and What led to your perception that you have ADHD? Conversations were transcribed and thematic statements developed, using the life-world existentials of lived space, lived time, lived relationships and lived corporeality to deepen considerations of meaning.

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.

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.

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.

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.

The Lived Experience of Nursing Students With Formative Assessment Formally Embedded in Clinical Courses: A Transcendental Phenomenological Study

The potential of formative assessment (FA) for informing learning in classroom-based nursing courses is clearly established in the literature; however, research on FA in clinical courses remains scarce. This inquiry explored the lived experience of nursing students using transcendental phenomenology and described the phenomenon of being assessed in clinical courses. The research question guiding the study was: How is the phenomenon of assessment experienced by nursing students when FA is formally embedded in clinical courses? Inherent in this question were the following issues: (a) the meaning of clinical experiences for nursing students, (b) the meaning of being assessed through FA, and (c) what it is like to be assessed when FA is formally embedded within clinical experiences. The noematic themes that illuminated the whatness of the participants’ experience were (a) enabled cognitive activity, (b) useful feedback, (c) freedom to be, (d) enhanced focus, (e) stress moderator, and (f) respectful mentorship. The noetic themes associated with how the phenomenon was experienced were related to bodyhood, temporality, spatiality, and relationship to others. The results suggest a fundamental paradigm shift from traditional nursing education to a more pervasive integration of FA in clinical courses so that students have time to learn before being graded on their practice. Furthermore, this inquiry and the literature consulted provide evidence that using cognitive science theory to inform and reform clinical nursing education is a timely option to address the repeated calls from nursing leaders to modernize nursing education. This inquiry contributes to reduce our reliance on assumptions derived from research on FA in nursing classrooms and provides evidence based on the reality of using formative assessment in clinical courses. Recommendations for future research are presented.

Personal Support Workers' Experience of Collaboration in a Long-Term Care Facility in Rural Ontario

The growing complexity of healthcare needs of residents living in long-term care necessitates a high level of professional interdependence to deliver quality, individualized care. Personal support workers (PSWs) are the most likely to observe, interpret and respond to resident care plans, yet little is known about how they experience collaboration. This study aimed to describe PSWs’ current experiences with collaboration in long-term care and to understand the factors that influenced their involvement in collaboration. A qualitative approach was used to interview eight PSWs from one long-term care facility in rural Ontario. Thematic analysis revealed three themes: valuing PSWs’ contributions, organizational structure, and individual characteristics and relationships. Collaboration was a difficult process for PSWs who felt largely undervalued and excluded. To improve collaboration, management needs to provide opportunities for PSWs to contribute and support the development of relationships required to collaborate.

The experience of knowing without sharing the proximity of death due to cancer for family members in the Basque Country

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal

The Educational Experience of Students of Chinese Origin in a French-Speaking Context : the role of school, family, and community

Cette recherche vise à documenter l’expérience scolaire des élèves québécois d’origine chinoise à l’école secondaire de langue française et à examiner les dynamiques qui influencent la réussite scolaire de ces élèves. Elle s’intéresse plus précisément aux impacts des facteurs relatifs à l’école, à la famille immigrante, et à ceux de la communauté ethnique sur l’intégration de ces jeunes dans un contexte francophone. Les données ont été principalement recueillies à travers des entretiens semi-structurés approfondis auprès d’élèves d’origine chinoise et de différents acteurs du paradigme éducatif (parents, acteurs scolaires et intervenants communautaires). D’autres instruments, tels que l’analyse du contenu de documents et de médias, ont également été utilisés afin de fournir des informations contextuelles et d’enrichir les données d’entrevues. Les données ont été analysées selon un cadre théorique ouvert et inclusif où la réussite scolaire des élèves issus de l’immigration est mesurée en mettant l’accent sur l’influence de la maîtrise de la langue d’enseignement, du capital culturel et social de la famille et de la communauté immigrante, ainsi que des facteurs systémiques au niveau de l’école. Les résultats de cette étude dans trois écoles cibles montrent qu’en général les élèves d’origine chinoise connaissent une expérience positive, surtout en ce qui concerne leur performance scolaire en mathématiques et sciences. Cependant, les nouveaux arrivants ont tendance à éprouver des difficultés dans l’apprentissage du français et pour leur intégration sociale. En effet, le processus d’intégration socioscolaire des jeunes chinois est sous l’influence des différents milieux qu’ils fréquentent. À propos de l’influence des dynamiques scolaires, les résultats de la recherche indiquent qu’une relation maître-élève positive joue un rôle important dans la réussite éducative de ces élèves. Toutefois, l’insuffisance du soutien à l’apprentissage défavorise l’intégration linguistique et sociale des élèves nouvellement arrivés. Les données de cette étude soulignent notamment le rôle de la famille immigrante et de la communauté ethnique dans l’expérience scolaire de ces jeunes. D’une part, sous l’impact des dynamiques familiales, notamment ce qui à trait au projet migratoire, à la culture chinoise et à l’expérience pré- et post-migratoire, les parents immigrants chinois s’impliquent activement dans les études de leurs enfants, malgré des barrières linguistiques et culturelles. D’autre part, afin de surmonter les effets négatifs des faibles liens entretenus avec l’école de langue française, les parents chinois ont largement recours aux ressources au sein de la communauté ethnique, tels que les médias de langue chinoise, les organismes ethnospécifiques de services aux immigrants, l’école du samedi et les institutions religieuses ethniques. Ces institutions sociales ethniques contribuent à soutenir les valeurs culturelles, échanger des informations, établir des modèles pour les jeunes et à fournir des services appropriés en matière culturelle et linguistique.