Between freedom and reclusion: Social support as a quality-of-life component in the family caregiver-dependent person binomial

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred, It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Disabled volunteers : an analysis of the experiences of wheelchair-users who volunteer

Following grounded-theory methodology, this thesis provides an analysis of the volunteering experiences of 47 wheelchair-users. It challenges the traditional image of volunteering which tends to conceptualise non-disabled people as the instigators of voluntary action (the helpers) and disabled people as the recipients of volunteerism (the helped). It also begins to fill a notable gap in academic knowledge about the volunteering experiences of disabled people. The literature review showed that contemporary conceptualisations of disability were unsuitable for this thesis. Thus, an organising framework is proposed which acknowledges that disabled peoples’ experiences may be influenced by medically and socially constructed factors – or by a combination of both acting simultaneously (medical-social factors). Having conceptualised disability for the purposes of the study, the thesis then provides an account of the research methodology used. This is followed by a presentation of research findings. An analysis of the volunteers’ demographic, epidemiological and background characteristics is provided and their perceptions of the benefits of, and barriers to, volunteering highlighted. This is followed by an analysis of their volunteering experiences. Theory is developed in order to explain the volunteers’ experiences from the approach outlined within the organising framework. The final part of the thesis adopts a reflexive approach to contextualise the research processes from the writer’s own perspective as a disabled person conducting research into the lived experiences of other disabled people. The thesis concludes by highlighting the implications of the study for future social research.

But it’s not all about the sex:mothering, normalisation and young learning disabled people

This paper is about mothering, young learning disabled people, their sexualised and relationship lives and normalisation - not through the lens of the disabled person, but via a mothers perspective and theoretical discussion. As a mother who has a learning disabled daughter, a feminist and an academic, my own mothering experience, my PhD research and social theory are woven throughout this paper with the intention of opening up debate about sex, intimacy, normalisation, and how this impacts upon young learning disabled people. I suggest that the relationship between sex, reproduction, intimacy and intellectual impairment, and a project to decipher what it means to be human, in all its dirty glory are also part of the discourse that needs to be discussed experientially and theoretically. So much so that the messy world within which we all live can be variously and differently constructed.

Factors influencing health promotion activities in midlife and older Australian women with a chronic disease

Background: Chronic diseases including type 2 diabetes are a leading cause of morbidity and mortality in midlife and older Australian women. There are a number of modifiable risk factors for type 2 diabetes and other chronic diseases including smoking, nutrition, physical activity and overweight and obesity. Little research has been conducted in the Australian context to explore the perceived barriers to health promotion activities in midlife and older Australian women with a chronic disease. Aims: The primary aim of this study was to explore women’s perceived barriers to health promotion activities to reduce modifiable risk factors, and the relationship of perceived barriers to smoking behaviour, fruit and vegetable intake, physical activity and body mass index. A secondary aim of this study was to investigate nurses’ perceptions of the barriers to action for women with a chronic disease, and to compare those perceptions with those of the women. Methods: The study was divided into two phases where Phase 1 was a cross sectional survey of women, aged over 45 years with type 2 diabetes who were attending Diabetes clinics in the Primary and Community Health Service of the Metro North Health Service District of Queensland Health (N = 22). The women were a subsample of women participating in a multi-model lifestyle intervention, the ‘Reducing Chronic Disease among Adult Australian Women’ project. Phase 2 of the study was a cross sectional online survey of nurses working in Primary and Community Health Service in the Metro North Health Service District of Queensland Health (N = 46). Pender’s health promotion model was used as the theoretical framework for this study. Results: Women in this study had an average total barriers score of 32.18 (SD = 9.52) which was similar to average scores reported in the literature for women with a range of physical disabilities and illnesses. The leading five barriers for this group of women were: concern about safety; too tired; not interested; lack of information about what to do; with lack of time and feeling I can’t do things correctly the equal fifth ranked barriers. In this study there was no statistically significant difference in average total barriers scores between women in the intervention group and those is the usual care group of the parent study. There was also no significant relationship between the women’s socio-demographic variables and lifestyle risk factors and their level of perceived barriers. Nurses in the study had an average total barriers score of 44.48 (SD = 6.24) which was higher than all other average scores reported in the literature. The leading five barriers that nurses perceived were an issue for women with a chronic disease were: lack of time and interferes with other responsibilities the leading barriers; embarrassment about appearance; lack of money; too tired and lack of support from family and friends. There was no significant relationship between the nurses’ sociodemographic and nursing variables and the level of perceived barriers. When comparing the results of women and nurses in the study there was a statistically significant difference in the median total barriers score between the groups (p < 0.001), where the nurses perceived the barriers to be higher (Md = 43) than the women (Md = 33). There was also a significant difference in the responses to the individual barriers items in fifteen of the eighteen items (p < 0.002). Conclusion: Although this study is limited by a small sample size, it contributes to understanding the perception of midlife and older women with a chronic disease and also the perception of nurses, about the barriers to healthy lifestyle activities that women face. The study provides some evidence that the perceptions of women and nurses may differ and argues that these differences may have significant implications for clinical practice. The study recommends a greater emphasis on assessing and managing perceived barriers to health promotion activities in health education and policy development and proposes a conceptual model for understanding perceived barriers to action.

Review of the long-term disability associated with hip fractures

Objectives To determine the proportion of hip fracture patients who experience long-term disability and to re-estimate the resulting burden of disease associated with hip fractures in Australia in 2003. Methods A literature review of the functional outcome following a hip fracture (keywords: morbidity, treatment outcome, disability, quality of life, recovery of function, hip fractures, and femoral neck fractures) was carried out using PubMed and Ovid MEDLINE. Results A range of scales and outcome measures are used to evaluate recovery following a hip fracture. Based on the available evidence on restrictions in activities of daily living, 29% of hip fracture cases in the elderly do not reach their pre-fracture levels 1 year post-fracture. Those who do recover tend to reach their pre-fracture levels of functioning at around 6 months. These new assumptions result in 8251 years lived with disability for hip fractures in Australia in 2003, a 4.5-fold increase compared with the previous calculation based on Global Burden of Disease assumptions that only 5% of hip fractures lead to long-term disability and that the duration of short-term disability is just 51 days. Conclusions The original assumptions used in burden of disease studies grossly underestimate the long-term disability from hip fractures. The long-term consequences of other injuries may similarly have been underestimated and need to be re-examined. This has important implications for modelling the cost-effectiveness of preventive interventions where disability-adjusted life years are used as a measure of health outcome.

Performing immobility / protesting immobility: The risks & rewards of public space protest performances

Though there is much interest in mobilities and performing mobilities as a characteristic of modern, urban, social life today, this is not always matched by attention to immobilities, as the flipside of mobility in modern life. In this paper, I investigate public space performances designed to draw attention to precisely this counterpoint to current discourses of mobilities – performances about the socially produced immobilities many people with disabilities find a more fundamental feature of day-to-day life, the fight for mobility, and the freedom found when accommodations for alternative mobilities are made available. Although public policy is increasingly aligned with a social model of disability, which sees disability as socially constructed through systems, institutions and infrastructure deliberately designed to exclude specific bodies – stairs, curbs, queues and so forth – and although governments in the US, UK, and to a lesser degree Australia, New Zealand and other Commonwealth nations aim to address these inequalities, the experience of immobility is still every-present for many people. This often comes not just from pain, or from impairment, or event from lack of accommodations for alternative mobilities, but from fellow social performers’ antipathy to, appropriation of, or destruction of accommodations designed to facilitate access for a range of different bodies in public space, and thus the public sphere. The archetypal instance of this tension between the mobile, and those needing accommodations to allow mobility, is, of course, the antipathy many able bodied people feel towards the provision of disabled parking spaces. A cursory search online shows thousands of accounts of antagonism, vitriol, and even violence prompted by disputes which began when a disabled person asked an able person to exit a designated disabled parking space. For many, it seems, expecting them to pass by such parks so others can experience the mobility they take for granted is too much. In this paper, I examine a number of protest performances in public space in which activist present actions – for example, placing wheelchairs in every regular parking space in a precinct – to give bystanders, passersby and spectators, as well as antagonistic fellow social performers, a sense of what socially produced immobility feels like. I examine responses to such protest performances, and what they say about the potential social, political and ethical impacts of such protests, in terms of their potential to produce new attitudes to mobility, alternative mobility, and access to alternative modes of mobility.

Vaikeavammaisen nuoren aikuistuminen : Yksilöllinen ja erilainen elämänkulku

Transition to adulthood of severely disabled adolescents. Diversity in individual life courses. The focus of this study is to examine the transition to adulthood of severely disabled adolescents as part of their life course. The data for this study were gathered through interviews with nine severely disabled adolescents, who were interviewed several times over a period of eight years. At the beginning of the study the adolescents were between 18 and 24 years old. The informants had severe disabilities manifesting themselves as physical incapacity, cerebral palsy, vision or hearing impairment, neurological disease, or developmental disability. One of the adolescents communicated with symbols. All except one used a wheelchair. As severely disabled adolescents, they received benefits from Kela for persons with severe disabilities, such as the higher-rate or special disability allowance or disability pension, the higher-rate or special pensioners' care allowance, or medical rehabilitation services. The interviews focused on a number of selected themes such as relationships, family, education, work, leisure-time activities, dating, decision-making, independence, happiness, and one s self-image and identity. Data were also derived from interviews with five experts. Two of the experts interviewed were severely disabled themselves. The theoritical foundation of the study lies in perviuos research on the severly disabled, the transition to adulthood and the life course. The method of analysis and interpretation is qualitative and based on interviews with the adolescents. In terms of the analytical process, the focus is on recognizing individual events in the transition process to adulthood and identifying the meanings assigned to them by the adolescents. The narratives also provide a method to shed light on the individuality of the transition. The individual situations of severely disabled adolescents vary, and their disability impacts the range of options available to them as they plan their life course. The medical and social models of disability also have an effect on life courses. Although severely disabled adolescents are able to attain some goals, they remain outsiders in many respects. Key words: Disabled person, severely disabled person, adolescent, transition to adulthood, identity, life course.

História de Vida de alunos com deficiência intelectual: percurso escolar e a constituição do sujeito

Esta tese procura compreender o processo de inclusão escolar dos alunos com deficiência intelectual a partir das suas histórias de vida e da percepção que eles têm da escola, considerando a relação entre deficiência, escola e construção do conhecimento. A pesquisa foi realizada em uma escola do campo, pertencente à rede pública estadual do município de Teresópolis no Rio de Janeiro. Objetivo principal foi compreender o processo de inclusão das pessoas com deficiência intelectual na escola regular a partir das histórias de cinco jovens inseridos na rede regular de ensino. Tratou-se de uma pesquisa qualitativa norteada pelo método da história de vida, segundo os pressupostos de Glat (2009), Augras (2009), Ferrarotti (1993) e outros. O referencial teórico adotado no estudo pautou-se na abordagem psicossocial da deficiência, ressaltando a relação que a pessoa com deficiência estabelece com o meio social e cultural do qual faz parte. A partir das histórias de vida dos sujeitos foi possível compreender como os jovens narram sua trajetória escolar, com destaque para as seguintes categorias: 1) trajetória escolar, 2) o papel da escola; 3) relação com os professores e as disciplinas; 4) relação com os colegas dentro e fora da escola; 5) perspectivas de futuro e transição para a vida adulta. O estudo revelou as contradições e a complexidade do processo de inclusão de alunos com deficiência intelectual em escolas comuns, particularmente quando se trata da inserção de jovens no segundo segmento do Ensino Fundamental e no Ensino Médio. Percebemos que mesmo após anos de discussões e pesquisas sobre a inclusão escolar de alunos com deficiência intelectual suas trajetórias ainda são marcadas pela cultura da incapacidade e do descrédito em relação ao que esses alunos podem fazer. As políticas de inclusão, embora bastante avançadas do ponto de vista de suas concepções teóricas, na prática não se traduzem na superação de práticas homogeneizadoras de ensino e organização do espaço escolar. Esperamos que esta pesquisa contribua significativamente para o contexto da educação brasileira, seja no âmbito da escola comum ou da Educação Especial, de maneira que as falas que aqui foram apresentadas ecoem e signifiquem um ponto de reflexão sobre como os sistemas educacionais e nós mesmos estamos compreendendo o processo de inclusão de alunos com deficiência e outras necessidades especiais na escola e na sociedade.

Sehzwang als Blindheit - Versuch zum 'diagnostischen Blick' in der Sonderpädagogik

Der diagnostische Blick ist einserseits notwendige Voraussetzung zur Festellung von sonderpädagogischem Förderbedarf bzw. entwicklungsspezifischen Förderangeboten, andererseits verengt sich eben dadurch professionelle Wahrnehmung. Sonderpädagogen entgehen dieser Aporie nicht. (Autor)

Hör-Spiele/Laut-Sprecher. Aspekte medialer Hörerziehung an der Schule für Geistigbehinderte

Sonderpädagogisch orientierter Unterricht thematisiert Hören auf dreierlei Weise: Innerhalb von Artikulationsförderung (Lautproduktion) geht es um die Unterscheidung, Wiederholung einzelner Phoneme oder Phonemgruppen, deren Zusammenbinden zu Wörtern, Sätzen usw. und damit um Aufbau und Stabilisierung auditiv-motorischer Regulationskreise bei der Sprachproduktion. In der Wahrnehmungsförderung geht es um Unterscheidung und Benennung von Klängen oder Geräuschen. Ansätze der Medienerziehung heben den Unterschied konservierter/vermittelter und tatsächlicher Klangereignisse hervor. In allen drei Perspektiven geht es um die Ausbildung, Verbesserung, Schulung des Hörorgans und der darauf bezogenen kognitiven und sprachlichen Leistungen. Was dabei allerdings vernachlässigt bleibt ist der ursprüngliche Weltbezug des Hörens. Denn wir hören nicht an sich, sondernd stets irgendwas. Der Klangcharakter der Welt (Schläft ein Lied in allen Dingen) ist nicht eine unverbindliche Metapher sondern korrespondiert mit unserer Fähigkeit zu hören. Nachfolgend wird deshalb vorgeschlagen, Hören als Anliegen des Sachunterrichts zu begreifen und im Rahmen einer ästhetischen Elementarerziehung zu thematisieren. Einige Unterrichtsbeispiele illustrieren, welchen Ertrag eine solche Sicht hat. Dabei soll auch deutlich werden, daß Hörerziehung kein Additivum sein kann, sondern wichtiges Glied schulischer Kommunikationsförderung. (DIPF/Orig.)

Inklusion als Verstrickung. Essay

Im Anschluß an das narrative Verständnis der Zeit bei Paul Ricoeur und Wilhelm Schapp entwickelt der Text die These, daß Lebenszeit die Summe der erzählten und erzählbaren Geschichten ist, die wir über uns und die wir einander zu erzählen haben. Wenn diese These Geltung besitzt, plausibel und nachvollziehbar ist, dann sind Sonderpädagogen Geschichtenerzähler. Allerdings (re-)konstruieren sie nur eine Geschichte, nämlich die der Behinderung. Nur in diesem Fokus sind andere Menschen sonderpädagogisch überhaupt interessant. Dieser unauflösliche Widerspruch fundiert Sonderpädagogik. Fatal im Sinne von „end-gültig“ist die Konsequenz für den so Erzählten: wer nur eine Geschichte von sich zu erzählen hat, über wen es nur eine Geschichte zu erzählen gibt, der ist arm dran. Behinderung ist ein Geschichtsmonopol. Dem ist nur durch disziplinkritische Auswilderung zu entgehen. Die pädagogische Aufgabe liegt in der Eröffnung eines Horizontes von Geschichten. Dies kann die verengenden institutionellen und organisatorischen Fragestellungen gegenwärtiger inklusiver Bewegungsforschung erweitern und ergänzen. Es ist dabei gleichgültig, ob dies zu einer Neubestimmung von akademischer Sonderpädagogik oder ihrer Substituierung führt. Die weißen Handschuhe auszuziehen gilt es allemal. (DIPF/Orig.)

Stimm-Bruch. Über Artikulationsförderung in der Ober- und Werkstufe. Ein Beitrag zu Musik und Kommunikation

[...] Der Autor fragt zunächst, weshalb Artikulationsförderung ins Abseits geraten ist. Es wird vorgeschlagen, neben dem kommunikativen Gebrauch der Stimme, unterrichtlich (wieder) den ursprünglichen Aspekt der ,Selbstvernahme' der Stimme zu berücksichtigen. Eine solche Aufmerksamkeit auf Stimme kann sich innerhalb der Pädagogik auf Konzepte basaler Förderung berufen. Wesentliche Impulse könnten jedoch aus Bereichen kommen, die außerhalb von Schule und Unterricht liegen. Damit sind insbesondere Künstler und Künstlerinnen gemeint, die im Bereich stimmlicher Performance arbeiten sowie Formen musikalischer Jugendkultur wie rap, hiphop und scat. Einige Unterrichtsbeispiele sollen altersangemessene Möglichkeiten der Artikulationsförderung in der Ober- und Werkstufe aufzeigen. (DIPF/Orig.)

Aspekte der Kompetenzentwicklung

In der Allgemeinen Pädagogik scheint es ausgemacht, dass Teilhabe und Selbstbestimmung von Kompetenzentwicklung abhängig sind. Für die Geistigbehindertenpädagogik ist es aus mancherlei Gründen schwer, sich dieser Sichtweise vorbehaltlos anzuschließen. Vorgeschlagen wird eine Definition von Kompetenzentwicklung, die eine ausschließlich individuell kognitive Bestimmung erweitert um relationale, situative, fakultative und kulturelle Dimensionen des Kompetenzbegriffs. Ein solches Verständnis von Kompetenzentwicklung ist anschlussfähig sowohl an die Allgemeine Pädagogik als auch an die Definition von Behinderung der Weltgesundheitsorganisation.

¿Barreras invisibles? Actitudes de los estudiantes universitarios ante sus compañeros con discapacidad

El presente trabajo analiza los conocimientos, opiniones y actitudes de los estudiantes universitarios sobre sus compañeros con discapacidad. La integración educativa y social de estos estudiantes es objeto de preocupación y estudio en todo el sistema educativo español, incluida la enseñanza superior en la que 21.942 universitarios con discapacidad se encontraban matriculados en el curso 2013-2014. El estudio se realiza en el marco de dos Proyectos de Innovación Educativa[1] de la Universidad de Málaga en los que se examinaron las actitudes del personal docente e investigador, el alumnado en general y el alumnado con discapacidad de esta institución. En este artículo se recogen las perspectivas de los estudiantes sin discapacidad, necesarias para medir el grado de aceptación dentro de las aulas universitarias. Se empleó una encuesta suministrada mediante correo electrónico a la totalidad de la población de estudiantes de la Universidad de Málaga (N= 32.464). El tamaño de la muestra fue de 620 estudiantes, por lo que trabajamos con un margen de error del 3,9% para la estimación de los porcentajes con un nivel de confianza del 95%. Los datos, analizados mediante análisis estadístico, visibilizan la importancia de un elevado grado de información y conocimiento así como de una experiencia directa con la discapacidad. Ambas circunstancias se traducen en actitudes más positivas y favorables. Tan solo el 20% de los alumnos manifestó haber recibido en alguna ocasión cualquier tipo de información sobre este asunto por parte de la Universidad; no obstante, la mayoría valora positivamente la presencia de alumnos con discapacidad en la Universidad, la posibilidad de contar ellos como compañeros de clase y el enriquecimiento que supone esta convivencia dentro del aula. Se discuten posibles acciones para mejorar las actitudes hacia los estudiantes con discapacidad. Además, se plantea incluir una perspectiva que promueva el empoderamiento de estos estudiantes. [1] PIE 10-135 y PIE 13-103.