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 The notion of cancer as simply a medical concern is outdated.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.

KAIRON PROJECT : assessing the role of expressive arts in community-based breast cancer support systems in the Niagara Region

Research Report Written for the Canadian Breast Cancer Foundation.

Community Recreation and Leisure Activities in Adults with Developmental Disabilities who have Recently Relocated to Community-based Residences in Ontario

In 2009, the Ontario Government closed the last three remaining large-scale institutions for people with Developmental Disabilities (DD). The purpose of this study is to examine the community-based recreation and leisure activities of 87 adults with DD who have recently moved into the community. Study 1 provided a descriptive insight into the community recreation and leisure activities, and revealed that people with DD engage in low levels of community activities, however are reported to have the desire to engage more often. Staff reported that people with DD do not have the opportunities to engage in their preferable activities. Study 2 investigated the prbspective predictors of the number and frequency of community, recreation and leisure activities and found that a higher level of functioning predicted a greater number of community activities ([beta] = .26, P < .05), while both a higher level of functioning ([beta] = .38,p < .001) and greater preference ([beta] = .23. p < .05) predicted more frequent access to community activities. Future research and the implications of the findings for clinical practice and policy development were discussed.

Managing Risk in a Culture of Rights: Providing Support and Treatment in Community-Based Settings for Persons with Intellectual Disabilities who Sexually Offend

People with intellectual disability who sexually offend commonly live in community-based settings since the closing of all institutions across the province of Ontario. Nine (n=9) front line staff who provide support to these individuals in three different settings (treatment setting, transitional setting, residential setting) were interviewed. Participants responded to 47 questions to explore how sex offenders with intellectual disability can be supported in the community to prevent re-offenses. Questions encompassed variables that included staff attitudes, various factors impacting support, structural components of the setting, quality of life and the good life, staff training, staff perspectives on treatment, and understanding of risk management. Three overlapping models that have been supported in the literature were used collectively for the basis of this research: The Good Lives Model (Ward & Gannon, 2006; Ward et al., 2007), the quality of life model (Felce & Perry, 1995), and variables associated with risk management. Results of this research showed how this population is being supported in the community with an emphasis on the following elements: positive and objective staff attitude, teamwork, clear rules and protocols, ongoing supervision, consistency, highly trained staff, and environments that promote quality of life. New concepts arose which suggested that all settings display an unequal balance of upholding human rights and managing risks when supporting this high-risk population. This highlights the need for comprehensive assessments in order to match the offender to the proper setting and supports, using an integration of a Risk, Need, Responsivity model and the Good Lives model for offender rehabilitation and to reduce the likelihood of re-offenses.

A Comparative Analysis of Community-Based Service Providers for "Extreme" Case ASD: Exploring Activity Program Options

The purpose of my research was to examine how community-based organizations in the Niagara region provide programs for children with Autism Spectrum Disorder (ASD), who are considered to represent “extreme” or “severe” cases. A qualitative, comparative case study was conducted that focused on three organizations who provide summer recreation and activity programs, in order to examine the issues these organizations face when determining program structure and staff training; and to understand what the threshold for physical activity is in this type of setting, and how the unique needs surrounding these “severe” cases are met while attending the program. Purposeful sampling was employed to select a supervisor and senior staff member from each organization to discuss the training process, program development and implementation, and the resources and strategies used within their organization’s community-based program. A confirming comparative analysis was comparative analysis of a parents survey with six mothers whose children are considered “severe” indicated that camp staffs’ expectations are unrealistic where as the parents and supervisors have more realistic expectations within the “real world” of camp. There is no definition of “severe” or “extreme” and therefore severity is dependent upon the context.

Perspectives of Parents of Children with Autism Spectrum Disorder on a Community-Based Parent Education Program

In 2012 a community-based agency that oversees Intensive Behaviour Intervention services for young children diagnosed with Autism Spectrum Disorder (ASD) began delivering newly developed curricula to parents of eligible children. The curricula’s intent was to inform parents about ASD and Applied Behaviour Analysis, to increase their awareness of available community resources, and assist them to be active and engaged in their child’s learning. This mixed-method study used a program-specific survey and focus groups to explore the perspectives parents had on their involvement in these education sessions. Through constant comparison analysis 4 major and 3 minor themes emerged. In general, parents acknowledged that this parent education program included relevant content and a favourable delivery format. The study summarized a number of well-articulated, practical suggestions parents provided. Implications for practice would be applicable to educators interested in providing quality group-based education to parents of young children with ASD.

Understanding space, place and leisure of women over 85 living in the community

There is an increase in the number of older adults 85 and over, who are choosing to live alone within the community. Moreover, older adults who live alone are reportedly spending an extensive amount of time alone within the home environment. In an effort to provide additional support and resources to older adults living in the community, a compliment of services are being offered through public and private organizations. These in-home supports focus on the instrumental or functional tasks of daily living, such as personal and rehabilitative care, nourishment, maintenance and upkeep of the home, as well as volunteer social visitation. However leisure resources and programs are not included among these services. Consequently, this creates a gap in leisure provision among this segment of the population. Throughout the life course, an individual's identity, role and purpose are developed and sustained through instrumental work roles in the formal and informal sector, as well as through personally meaningful leisure pastimes and experiences. Although roles shift post retirement, participation in instrumental and expressive activities can provide opportunities through which older adults are able to fulfill their need for agency (individuality and autonomy) and affiliation (social relatedness). Therefore barriers that inhibit instrumental or leisure experiences can negatively impact older adults' quality of life. This study explored the leisure lifestyles of four older adults, all of whom were over 85, lived alone within the community and were oriented to person, time and place. It became apparent that participants ordered their lives around a routine that consisted of instrumental, expressive and socially integrated tasks and activities. Moreover participants purposely chose to remain at home because their home environment facilitated freedom, choice and independence. As a result all four participants viewed their independence within the home as a critical determinant to their overall quality of life. Challenges associated with the home environment, participants' personal capacities and relationships were negotiated on a daily basis. Failure to positively adapt to these challenges inhibited meaningful engagement and personal fulfillment. Traditionally, leisure service delivery has been offered within institutions and through various community based venues. As a result leisure provision has been focused on the needs of the frail elderly who reside in institutions or the well elderly who are able to access leisure amenities within the community. However the growing number of older adults electing to live alone is on the rise. As individuals age the home becomes the preferred context for leisure experiences. If older adults are choosing to live alone, then both their instrumental and leisure needs must be addressed. As a result, it is imperative that leisure professionals extend the scope of service delivery to include home centered older adults.

Deinstitutionalization and community inclusion of individuals with intellectual disabilities in Ontario : a case analysis

In the last few decades, there have been significant changes in the way people with intellectual disabilities (ID) live in many countries around the world. Large isolated institutions have been replaced by community-based housing. This study examined the deinstitutionalization process in Ontario and it's effects on the lives of three individuals with ID. A case analysis approach was used allowing for in depth evaluation of the quality of life of these participants following their discharge with a focus on family involvement, community engagement, and choice making. A discrepancy analysis between the Essential Elements Plan (EEP), constructed when they were entering the community placement, and the current living arrangements was also done. The results of this study suggested that with community living comes improvements in family interactions, community engagement, and decision-making. However, these improvements were found to be minimal. Also, little discrepancy was found between the EEPs and their actual placements.

A Description of Psychotropic Medication Use in Institution and Community Settings in Ontario.

This study examined patterns of psychotropic medication use among 120 participants with intellectual disabilities (ID) who used to live in facilities and now reside in community-based settings in Ontario. There were significantly more participants taking psychotropic medication in the community (83.30/0) than in the facility (74.2%). Of those who showed change, 4.2% were taking medication in the facility but not in the community, and 13.3% were taking medications in the community but not in the facility. While significantly more participants in the community were taking antipsychotic and antidepressant medications, there was no significant increase in psychiatric diagnoses after relocation. Additionally, PRN use was significantly reduced in the comlnunity while daily medication use was significantly higher. The most common PRN in both settings was lorazepam and the most common antipsychotics were risperidone, quetiapine and olanzapine.

Comprehensive school health : an ethnographic case study

The purpose of this ethnographic case study was to describe the characteristics of one school's Comprehensive School Health (CSH) initiative and to explore the experiences of school community members in order to gain an understanding of how one school embraced a Comprehensive School Health approach. An elementary school (grades Junior Kindergarten to six) in Burlington, Ontario was the research site for this study. Multiple methods of data collection (observations, document analysis, interviews) were used in keeping with the ethnographic and case study approach. The data were coded using both a deductive and then inductive process (Merriam, 1998). From a deductive perspective, the coding system and the subsequent identification of categories were based on a priori categories identified by using the elements of CSH based on the Comprehensive School Health Consensus Statement prepared by the Canadian Association of School Health and the research questions. Findings included the role that various school community members as well as the implementation of different programs and policies played in applying a CSH approach. The impact ofthe physical environment was described as well as successes and challenges related to the school's experience in implementing CSH. Three main themes emerged that characterized this school's experience. The first theme relates to the fundamental question about CSH which is the school community's understanding o/the concept. The second theme focused on positive school culture and the third and most diverse theme was that of capacity. Engaging in CSH is a complex and long-term undertaking involving both the school and greater community. Based on the experiences of this school's community members, recommendations address the different levels of influence on the health of children.

The Clemente Course in the Humanities and critical pedagogy : a comparative analysis of Earl Shorris and bell hooks on poverty, racism, imperialism and patriarchy

The Clemente Course in the Humanities is an anti-poverty intervention for adults who self-identity as "poor" and humanities instructors. The course was created in 1995 by journalist Earl Shorris, who based the curriculum on a Socratic method of pedagogy and the "great books" canon of Robert Hutchins. It began as a community-based initiative in urban US settings, but since 1997 Mayan, Yup'ik and Cherokee iterations have been created, as well as on-campus bridge courses for non-traditional students to explore college-level education in Canada and the USA. The course potentially conflicts with critical pedagogy because the critical theories of Paulo Freire and contemporary cultural studies reject traditional notions of both the canon and teaching. However, a comparison between Shorris' and bell hooks' theories of oppression reveals significant similarities between his "surround of force" and her "capitalist imperialist white supremacist patriarchy," with implications for liberal studies and critical pedagogy.

Family attitudes toward the deinstitutionalization of individuals with developmental disabilities in Ontario : a quality of life analysis

The deinstitutionalization of individuals with developmental disabilities to community-based residential services is a pervasive international trend. Although controversial, the remaining three institutions in Ontario were closed in March of 2009. Since these closures, there has been limited research on the effects of deinstitutionalization. The following retrospective study evaluated family perceptions of the impact of deinstitutionalization on the quality of life of fifty-five former residents one year post-closure utilizing a survey design and conceptual quality of life framework. The methods used to analyze the survey results included descriptive statistical analyses and thematic analyses. Overall, the results suggest that most family members are satisfied with community placement and supports, and report an improved quality of life for their family member with a developmental disability. These findings were consistent with previously published studies demonstrating the short-term and long-term benefits of community living for most individuals with developmental disabilities and their families.

Youth Involvement in Organizational Decision Making: The Connection to Youth Initiative and Organizational Functioning

Studying positive adolescent development requires an examination of the mutually beneficial associations between youth and their environment. These youthcontext relations include both the contributions that youth make to others and society and the youth-context interactions that might predict positive youth outcomes. Community and youth-serving organizations, where youth may be involved in decision-making roles such as service delivery, advocacy, or on boards of directors, can provide one important context for youth contributions and for positive adolescent development. Research on the outcomes of youth involvement in organizational decision-making, however, is limited, and largely consists of exploratory qualitative studies. This dissertation is formatted as an integrated article dissertation. It begins with a review of the literature on contexts of structured youth activities and positive youth development. This review is intended to describe theory on development-context relations, in which development is considered an interactive process that occurs between individuals and their contexts, as it pertains the positive development of youth who are involved in various structured activities (e.g., volunteering). This description follows with a review of current research, and conclusions and rationale for the current studies. Following this theoretical and research background, the dissertation includes reports of two studies that were designed to address gaps in the research on youth involvement in organizational decision-making. The first was a qualitative research synthesis to elucidate and summarize the extant qualitative research on the outcomes of youth involvement in organizational decision making on adults and organizations. Results of this study suggested a number of outcomes for service provision, staff, and broader organizational functioning, including both benefits to organizations as well as some costs. The second study was a quantitative analysis of the associations among youth involvement, organizations' learning culture, and youth initiative, and relied on survey data gathered from adults and youth in community-based organizations with youth involvement. As expected, greater youth involvement in organizational decision making was associated with higher learning culture within the organization. Two dimensions of youth involvement, greater program engagement and relationships with adults, were related to greater youth initiative. A third dimension, sense of ownership, was not- .-.- associated with youth's level of initiative. Moreover, the association between relationships with adults and youth initiative was only significant in organizations with relatively low learning culture. Despite some limitations, these studies contribute to the research literature by providing some indication of the potential benefits and costs of youth involvement and by making an important contribution toward the early stages of context-level analyses of youth development. Findings have important implications for practitioners, funders, future research, and lifespan development theory.

Explorações educacionais (educational explorations) : schooling experiences of second-generation Portuguese Canadian students

This study explores the stories and experiences of second-generation Portuguese Canadian secondary school students in Southern Ontario, Canada. The purpose of this research was to understand the educational experiences of students, specifically the successes, challenges, and struggles that the participants faced within the education system. Questions were also asked about identity issues and how participants perceived their identities influencing their educational experiences. Six Portuguese Canadian students in grades 9 to 11 were interviewed twice. The interviews ranged from 45 minutes to 90 minutes in length. Data analysis of qualitative, open-ended interviews, research journals, field notes and curricular documents yielded understandings about the participants' experiences and challenges in the education system. Eight themes emerged from data that explored the realities of everyday life for second-generatiop Portuguese Canadian students. These themes include: influences of part-time work on schooling, parental involvement, the teacher is key, challenges and barriers, the importance of peers, Portuguese Canadian identity, lack of focus on identity in curricul:um content, and the dropout problem. Recommendations in this study include the need for more community-based programs to assist students. Furthermore, teachers are encouraged to utilize strategies and curriculum resources that engage learners and integrate their histories and identities. Educators are encouraged to question power dynamics both inside and outside the school system. There is also a need for further research with Portuguese Canadian students who are struggling in the education system as well as an examination of the number of hours that students work.

Social Economy and Developmental Disabilities: An Employment Option that Promotes a Form of Authentic Work and Fosters Social Inclusion

Typical employment options for people with developmental disabilities are insufficient. Most employment opportunities that are community-based provide typical workplace and geographical inclusion but tend not to support social inclusion and "belonging". This study explored the innovative employment alternative of social businesses and considered this form of employment for persons with a developmental disability as a viable avenue for meaningful work and social inclusion. A total of six business partners with a developmental disability were interviewed; two partners from three separate worker owned businesses. The partners' descriptions of their job and their workplace composed the interpretative findings. The social businesses provided an avenue for this group of people who tend to be segregated in isolated workshops or marginalized in mainstream work environments and who feel a sense of being "outsiders" to participate in meaningful work in community settings. This group of partners described their job as authentic "work" and discussed the many skills and the work ethic learned from their employment opportunity. In addition to the instrumental aspects of the job, the partners also discussed the group autonomy and self-determination of being their own "bosses". The partners confidently expressed feeling valued, understood in the context of others with similar life experiences, attached to the workplace and connected to a larger community as important outcomes of their businesses. These criteria of social inclusion (Hall, 2010) were complemented by teamwork, friendship and ultimately, with a feeling of being genuine "insiders". Replication of this innovative employment model would be recommended for groups of marginalized people with DD in other geographic areas.