Wellspring: an intrinsic case study of community-based education for adults living with cancer /

This paper presents education research as vital to addressing the issues faced by adults living with cancer. This qualitative study looked at philosophies of practice for cancer patient education. It was about understanding how values and beliefs shape the way program planners and managers operationalize their knowledge of adult education and how this has significant impact on meeting the needs of those touched by cancer. Improved technology has extended life expectancy, so that Canadians living with cancer, or even dying with cancer now spend less time in direct medical care. The notion of cancer as simply a medical concern is outdated. This study found that informational and support needs of adults living with cancer are often unmet, ignored or unknown. This research investigated a community-based education initiative that is inviting, accessible, and promotes a sense of hope. More specifically, this case study uncovered factors contributing to the success of Wellspring, a grass-roots cancer patient support centre which has been recognized nationally for its ability to effectively meet the diverse non-medical supportive care needs of as many cancer patients and caregivers as possible. Therefore, Wellspring was selected as a case study. Educating people to take charge of their own lives and supporting them in making informed decisions about their lifestyle choices made Wellspring part of a social action movement that focused on improving social attitudes toward people living with cancer. Results of this descriptive inquiry and philosophical inquiry evolved into data that was used to devise an organic model of community-based education that encompasses Adler's (1993) four dimensions of philosophy within a socio-cultural context.

An inquiry into the barriers to participation within the fitness industry for people living with mobility challenges

This qualitative study was designed to inquire about the barriers to participation within the fitness industry for people living with mobility challenges. i\n examination of the insights, stolies~ and experiences with barriers through interviews gi ven by 4 people living with mobility challenges (PMC) formed the core of the research. An analysis of the interviews from the 4 PMC informants was performed at t\\/O levels. First, a content analysis served to identify general and specific categories related to barrier issues within various fitness environments. Secondly, in-depth thematic analyses of the entries related to the insights and stories from the 4 informants which emerged from the content analysis of the data gave rise to fi ve thematic statements. From the thematic statements a fitness industry awareness protocol was created in the fonn of a statement response questionnaire. The protocol, which was given to 4 fitness assessors/trainers, \vas used to provide a snapshot of the fitness industry's readiness to work vvith disability. Throughout the process, the four PNIC informants formed a collaborati vely involved group of coresearchers, adding their voices to the narrative of the fitness-barrier experience. The result of the study suggests that barriers to participation within the fitness industry for PMC exist in various forms and levels of severity. The results also suggest that the fitness industry needs to better prepare their people and environment for working with people with physical disabilities, such as PMC, and provide a more open and positi ve environment for participation. Within the context of any fitness-related environment, recognizing that barriers to participation do exist, and acknowledging and accepting people with disabilities for who they are as indi viduals, will serve to develop a relationship where fitness practitioners and people with disabilities can work towards creating an inviting, inclusive, accessible, and barrier-free fitness environment for all.

Leisure as a Facilitator of Posttraumatic Growth in Individuals Living with Cancer

Although there is a growing body of literature that shifts the focus of chronic illness and trauma research to personal growth, there is limited literature on the role that leisure has in this process (e.g., Tedeschi & Calhoun, 2004). This qualitative study explored the role of leisure in the phenomenon of posttraumatic growth (PTG) for individuals living with cancer. The findings revealed that leisure influences PTG in four domains: (a) building meaningful relationships, (b) providing experiences to develop and maintain a sense of self, (c) creating opportunities to experience positive emotions, and (d) finding purpose in life. Findings provide insight on how individuals living with cancer perceive the role that leisure has in facilitating positive change after diagnosis. These findings will better enable healthcare and leisure providers to understand the unique needs of individuals living with cancer, and help them to facilitate meaningful leisure programs to encourage PTG.

Leisure-time physical activity in individuals with osteoporosis : associations with psychological well-being

With approximately 16% of the Canadian population living with osteoporosis, and rates expected to increase (Osteoporosis Canada, 2009), cost-effective treatment modalities that improve bone health and psychological well-being reflect an important public health agenda. Physical activity has been implicated as one non-pharmaceutical mechanism to help improve psychological well-being in the general population (Fox, Stathi, McKenna, & Davis, 2007) and in people diagnosed with osteoporosis (Osteoporosis Canada, 2007). The purpose of this investigation was to determine the association between leisure-time physical activity (LTP A) and well-being in people diagnosed with osteoporosis. A secondary purpose, using Basic Needs Theory (BNT; Deci & Ryan, 2002) was to determine if the fulfillment of three psychological needs (i.e., competence, autonomy and relatedness) mediated the relationship between LTP A and well-being. People diagnosed with osteoporosis (N= 190; Mage = 68.14; SDage = 11.54) were asked to complete a battery of questionnaires assessing L TP A, hedonic and eudaimonic well-being and perceived psychological need satisfaction in physical activity contexts. Bivariate correlations revealed a pattern of negligible (r's -0.02 to 0.35) to small correlations between LTP A and well-being with contextual positive affect (r = 0.24) and subjective vitality (r = 0.22) demonstrating statistical significance (p < .01). Results of the multiple mediation analysis indicated that perceived satisfaction of the three psychological needs mediated the relationship between LTPA and well-being with perceived competence emerging as a unique mediator. As such, LTP A was positively associated with well-being in people who are diagnosed with osteoporosis, and the fulfillment of the three psychological needs may be the mechanism through which this 111 effect is carried. Health promotion specialists and practitioners should encourage patients with osteoporosis to engage in LTP A, and support their needs for competence, autonomy and relatedness. Practical implications for researchers and health promotion specialists are discussed in terms ofthe results of this investigation.

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.

An examination of outdoor experience in the development of character in young adults with Type 1 Diabetes

Connected in Motion is a not for profit organization serving young adults with Type 1 diabetes. The organization hosted outdoor and experiential Type 1 diabetes education programs in January of2009 and 2010. The weekends provided non-clinical alternative Type 1 diabetes education to the underserved population of young adults within Canada. Six women living with Type I diabetes and between the ages of 22 and 30 participated in the Winter Slipstream weekends participated in this phenomenological research study. Through semi-structured interviews and artifact-elicitation interviews, ,{ the lived experiences of the participants were examined. Data analysis indicated that the sense of community created through outdoor programming and experiential education for young adults with Type I diabetes stimulated the development of self-efficacy and participant-perceived improvement in Type 1 diabetes self-management. There was no indication that outdoor and experiential Type I diabetes education had any impact on the development of autonomy among participants. Recommendations are made to encourage the successful implementation of further alternative (non-clinical) Type 1 diabetes education programs for young adults living with Type 1 diabetes.

Back to Basics: Exploring gestural habits as cues for anticipating self-injurious episodes in a child with Autism and Deafness

This research project is a longitudinal qualitative case study. It contributes to an understanding of self-injurious behaviour (SIB) by inviting the reader through the narrative of the lived experience of a fifteen year old child-informant and the network of individuals in his life. The value and importance of a case-study is that it focuses on the authenticity of the experience of living with disability. Through the use of detailed field observations, interviews and photo documents, the study thoroughly explores three main areas: quality of movements, potential cues as pre-cursors to episodes of self-injury, and purposeful communication. The research begins with a review of literature on Autism, Deafness and Self-injury, formulates the research design and orientation of Physical Education, Phenomenology and Semiotics, and then systematically explores four distinct phases in the analytical process. The aim was to explore self-injurious episodes in the child informant in hopes to translate the meaning of the behaviour and potentially utilize this to provide more opportunities for adapted physical activity. The findings reveal distinct patterns of movement cues utilized for different purposes. The implications of the findings are self-injurious episodes in the child informant are preceded by distinct patterns of movement that are potentially communicative. Suggested future direction of the research is expanding the scope to other disabilities for which verbal communication is challenging, and standardizing the translating tools to assist in understanding the communication of movement.

A Qualitative Study of the Professional Experiences of Teachers With Mobility Challenges and Their Self-Perceptions of Professional Success

This qualitative investigation explored the professional experiences of 3 Ontario teachers who have mobility challenges. The study’s participants (2 male and 1 female) were Ontario teachers who have permanent physical disabilities that challenge their means of mobility. Each participant has an Ontario Certified Teaching License and has either taught or is currently teaching in an Ontario school. My primary source of data collection was a semi-structured face-to-face interview with each participant. The focus of the interview was participant perspectives. Data analysis was accomplished in 3 phases. Data analysis generated 5 prominent themes of commonality among participants: (a) independence and sacrifice, (b) living with pain, (c) barriers and obstacles, (d) the importance of communication, and (e) professional benefits and personal rewards.

A phenomenological approach to understanding the psychological response to chronic low back pain

Chronic low back pain (CLBP) is a complex health problem of psychological manifestations not fully understood. Using interpretive phenomenological analysis, 11 semi-structured interviews were conducted to help understand the meaning of the lived experience of CLBP; focusing on the psychological response to pain and the role of depression, catastrophizing, fear-avoidance behavior, anxiety and somatization. Participants characterized CLBP as persistent tolerable low back pain (TLBP) interrupted by periods of intolerable low back pain (ILBP). ILBP contributed to recurring bouts of helplessness, depression, frustration with the medical system and increased fear based on the perceived consequences of anticipated recurrences, all of which were mediated by the uncertainty of such pain. During times of TLBP all participants pursued a permanent pain consciousness as they felt susceptible to experience a recurrence. As CLBP progressed, participants felt they were living with a weakness, became isolated from those without CLBP and integrated pain into their self-concept.

Unchained Minds: Self-Accounts of Madness

This thesis explores the connection between the historical and social construction of madness in relation to how society currently views madness and schizophrenia. The anti-psychiatry movement has been outlined using the work of anti-psychiatrists David Cooper, R. D. Laing and Franco Basaglia. Foucault’s work regarding madness and the asylum is also reviewed to give an overarching analysis of madness, including analysis of its creation. With the help of Basaglia, madness as class warfare and social disease are explored. By connecting this analysis to the medicalization of schizophrenia and the use of counter-narratives, this thesis uses the work of Deleuze and Guattari to illustrate how mental illness can be redefined through deterritorialization, reterritorialization and lines of flight. Specifically, this thesis uses a Foucauldian textual analysis to examine self-narratives of schizophrenia including, the films A Beautiful Mind and The Best of Youth, and the books Two Accounts of a Journey Through Madness, The Center Cannot Hold and Living With Voices. These self-narratives illustrate the importance of considering an individual’s voice when determining treatment options for mental illness. Overall, a shift in thinking is needed. The findings suggest self-help groups are not enough on their own and should be combined with medical intervention. Self-narratives are an important step in the recovery process as it allows one to come to terms with their voice hearing experiences. As well, self-narratives are useful in the treatment process as a tool that can help to redefine dominant conceptualizations of schizophrenia and mental illness today.

Relationship between Socio-Demographic Factors and Familial and Partner Pressures to Conceive in HIV-Positive Women in Ontario

This study examined the relationship between socio-demographic factors and family and partner pressure to conceive in women living with HIV in Ontario, Canada. A total of 490 women, aged 18-52 years were included in the study. The HIV Pregnancy Planning Questionnaire was used to collect data on socio-demographic, medical, and pressure variables. Multivariate logistic regression analysis suggest that increased age, years lived in Canada, and living in Toronto were associated with lower odds, and being married and having 0-1 lifetime births were associated with higher odds of family pressure to conceive. Increased age was associated with lower odds, and being married and living in Toronto were associated with higher odds of partner pressure to conceive. Findings suggest that socio-demographic factors influence the fertility decision-making process. Health care providers should consider socio-demographic factors along with medical factors when assisting women living with HIV and their partners to make informed reproductive decisions.

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.