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 The notion of cancer as simply a medical concern is outdated.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

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.

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.

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.

A qualitative narrative inquiry of the experience of accessing community supports among women who have experienced trauma

Abuse related trauma can have serious consequences on individuals' health and their state of well-being and may result in decreased access to different determinants of health. The purpose of this qualitative narrative inquiry using secondary data was to explore the experience of accessing community supports among eight women who had experienced abuse-related trauma. A conceptual framework drawn from the literature on social inclusion and social exclusion and a narrative inquiry method were used to explore epiphanies, customs, routines, images, and everyday experiences (Clandinin & Connelly, 2000) among the women. A Three-Dimensional Space Narrative Structure was used to explore the participants' personal or internal conditions, feelings, hopes and reaction as well as their social experiences in interaction with others in community. The participants described experiencing the impact of trauma in their past and present circumstances, a lack of accommodation of difference, challenges in maintaining a sense of self in a world of assumption and labels, impact of trauma on the determinants of health, and uncertainty about the future. The findings from the study demonstrate experiences of social exclusion among the participants in the past, further isolation and social exclusion in the present when personal life issues were ignored by community support services, and uncertainty about what the future will bring for them. The findings indicate close relationships between the women's personal lives and their social connections which need to be considered to mitigate social exclusion and enhance social inclusion.

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.

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.

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.

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.