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3 Evaluation of the Role of Advocacy and the Quality of Care in Reducing Health Inequalities for People with Autism, Intellectual and Developmental Disabilities at Sheffield Teaching Hospitals
Authors: Jonathan Sahu, Jill Aylott
Abstract:
Individuals with Autism, Intellectual and Developmental disabilities (AIDD) are one of the most vulnerable groups in society, hampered not only by their own limitations to understand and interact with the wider society, but also societal limitations in perception and understanding. Communication to express their needs and wishes is fundamental to enable such individuals to live and prosper in society. This research project was designed as an organisational case study, in a large secondary health care hospital within the National Health Service (NHS), to assess the quality of care provided to people with AIDD and to review the role of advocacy to reduce health inequalities in these individuals. Methods: The research methodology adopted was as an “insider researcher”. Data collection included both quantitative and qualitative data i.e. a mixed method approach. A semi-structured interview schedule was designed and used to obtain qualitative and quantitative primary data from a wide range of interdisciplinary frontline health care workers to assess their understanding and awareness of systems, processes and evidence based practice to offer a quality service to people with AIDD. Secondary data were obtained from sources within the organisation, in keeping with “Case Study” as a primary method, and organisational performance data were then compared against national benchmarking standards. Further data sources were accessed to help evaluate the effectiveness of different types of advocacy that were present in the organisation. This was gauged by measures of user and carer experience in the form of retrospective survey analysis, incidents and complaints. Results: Secondary data demonstrate near compliance of the Organisation with the current national benchmarking standard (Monitor Compliance Framework). However, primary data demonstrate poor knowledge of the Mental Capacity Act 2005, poor knowledge of organisational systems, processes and evidence based practice applied for people with AIDD. In addition there was poor knowledge and awareness of frontline health care workers of advocacy and advocacy schemes for this group. Conclusions: A significant amount of work needs to be undertaken to improve the quality of care delivered to individuals with AIDD. An operational strategy promoting the widespread dissemination of information may not be the best approach to deliver quality care and optimal patient experience and patient advocacy. In addition, a more robust set of standards, with appropriate metrics, needs to be developed to assess organisational performance which will stand the test of professional and public scrutiny.Keywords: Autism, intellectual developmental disabilities, advocacy, health inequalities, quality of care.
Procedia APA BibTeX Chicago EndNote Harvard JSON MLA RIS XML ISO 690 PDF Downloads 8952 From Victim to Ethical Agent: Oscar Wilde's The Ballad of Reading Gaol as Post-Traumatic Writing
Authors: Mona Salah El-Din Hassanein
Abstract:
Faced with a sudden, unexpected, and overwhelming event, the individual's normal cognitive processing may cease to function, trapping the psyche in "speechless terror", while images, feelings and sensations are experienced with emotional intensity. Unable to master such situation, the individual becomes a trauma victim who will be susceptible to traumatic recollections like intrusive thoughts, flashbacks, and repetitive re-living of the primal event in a way that blurs the distinction between past and present, and forecloses the future. Trauma is timeless, repetitious, and contagious; a trauma observer could fall prey to "secondary victimhood". Central to the process of healing the psychic wounds in the aftermath of trauma is verbalizing the traumatic experience (i.e., putting it into words) – an act which provides a chance for assimilation, testimony, and reevaluation. In light of this paradigm, this paper proposes a reading of Oscar Wilde's The Ballad of Reading Gaol, written shortly after his release from prison, as a post-traumatic text which traces the disruptive effects of the traumatic experience of Wilde's imprisonment for homosexual offences and the ensuing reversal of fortune he endured. Post-traumatic writing demonstrates the process of "working through" a trauma which may lead to the possibility of ethical agency in the form of a "survivor mission". This paper draws on fundamental concepts and key insights in literary trauma theory which is characterized by interdisciplinarity, combining the perspectives of different fields like critical theory, psychology, psychiatry, psychoanalysis, history, and social studies. Of particular relevance to this paper are the concepts of "vicarious traumatization" and "survivor mission", as The Ballad of Reading Gaol was written in response to Wilde's own prison trauma and the indirect traumatization he experienced as a result of witnessing the execution of a fellow prisoner whose story forms the narrative base of the poem. The Ballad displays Wilde's sense of mission which leads him to recognize the social as well as ethical implications of personal tragedy. Through a close textual analysis of The Ballad of Reading Gaol within the framework of literary trauma theory, the paper aims to: (a) demonstrate how the poem's thematic concerns, structure and rhetorical figures reflect the structure of trauma; (b) highlight Wilde's attempts to come to terms with the effects of the cataclysmic experience which transformed him into a social outcast; and (c) show how Wilde manages to transcend the victim status and assumes the role of ethical agent to voice a critique of the Victorian penal system and the standards of morality underlying the cruelties practiced against wrong doers and to solicit social action.
Keywords: Ballad of Reading Gaol, post-traumatic writing, trauma theory, Wilde.
Procedia APA BibTeX Chicago EndNote Harvard JSON MLA RIS XML ISO 690 PDF Downloads 14391 Leading, Teaching and Learning “in the Middle”: Experiences, Beliefs, and Values of Instructional Leaders, Teachers, and Students in Finland, Germany, and Canada
Authors: Brandy Yee, Dianne Yee
Abstract:
Through the exploration of the lived experiences, beliefs and values of instructional leaders, teachers and students in Finland, Germany and Canada, we investigated the factors which contribute to developmentally responsive, intellectually engaging middle-level learning environments for early adolescents. Student-centred leadership dimensions, effective instructional practices and student agency were examined through the lens of current policy and research on middle-level learning environments emerging from the Canadian province of Manitoba. Consideration of these three research perspectives in the context of early adolescent learning, placed against an international backdrop, provided a previously undocumented perspective on leading, teaching and learning in the middle years. Aligning with a social constructivist, qualitative research paradigm, the study incorporated collective case study methodology, along with constructivist grounded theory methods of data analysis. Data were collected through semi-structured individual and focus group interviews and document review, as well as direct and participant observation. Three case study narratives were developed to share the rich stories of study participants, who had been selected using maximum variation and intensity sampling techniques. Interview transcript data were coded using processes from constructivist grounded theory. A cross-case analysis yielded a conceptual framework highlighting key factors that were found to be significant in the establishment of developmentally responsive, intellectually engaging middle-level learning environments. Seven core categories emerged from the cross-case analysis as common to all three countries. Within the visual conceptual framework (which depicts the interconnected nature of leading, teaching and learning in middle-level learning environments), these seven core categories were grouped into Essential Factors (student agency, voice and choice), Contextual Factors (instructional practices; school culture; engaging families and the community), Synergistic Factors (instructional leadership) and Cornerstone Factors (education as a fundamental cultural value; preservice, in-service and ongoing teacher development). In addition, sub-factors emerged from recurring codes in the data and identified specific characteristics and actions found in developmentally responsive, intellectually engaging middle-level learning environments. Although this study focused on 12 schools in Finland, Germany and Canada, it informs the practice of educators working with early adolescent learners in middle-level learning environments internationally. The authentic voices of early adolescent learners are the most important resource educators have to gauge if they are creating effective learning environments for their students. Ongoing professional dialogue and learning is essential to ensure teachers are supported in their work and develop the pedagogical practices needed to meet the needs of early adolescent learners. It is critical to balance consistency, coherence and dependability in the school environment with the necessary flexibility in order to support the unique learning needs of early adolescents. Educators must intentionally create a school culture that unites teachers, students and their families in support of a common purpose, as well as nurture positive relationships between the school and its community. A large, urban school district in Canada has implemented a school cohort-based model to begin to bring developmentally responsive, intellectually engaging middle-level learning environments to scale.
Keywords: Developmentally responsive learning environments, early adolescents, middle-level learning, middle years, instructional leadership, instructional practices, intellectually engaging learning environments, leadership dimensions, student agency.
Procedia APA BibTeX Chicago EndNote Harvard JSON MLA RIS XML ISO 690 PDF Downloads 1496