Distress in children with learning disabilities at a respite unit: perspective on their experiences

Numerous studies have investigated the benefits of respite to families with a disabled child. Far fewer have examined the effects on the child and none have systematically compared information about this from different sources. Reports of behavioural reactions and views on distress were gathered from parents, teachers and respite staff. Children were also asked for their views. Over half the children (54%) were reported to show medium or strong negative reactions lasting for 1 or more days by a parent or teacher. Reported reactions varied widely between home and school and no concordance was found between parents, teachers and respite staff groups regarding distress. Some children's views differed from those of their parent or teacher. The findings highlight the extent of differences in perspectives and suggest the need for greater awareness of the possible distress to children attending respite. This is discussed in relation to factors such as the potential conflict of interests between parents and children, communication and behavioural difficulties, and the context in which the child is observed.

Social policy for nurses and the helping professions

The book examines the relationship between welfare and health and includes discussion of key policy issues such as; changes in health care delivery, regulation of professionals, privatisation, welfare pluralism and the tackling of health and social inequalities. The significance of social policy in preventing ill health and disability, as well as supporting the sick and disabled people, is emphasised throughout the book.

Meeting the emotional needs of parents who have a child with complex needs

The physical and financial demands of caring for a child with complex needs are acknowledged by health professionals. However the emotional needs of parents are not often recognised by health professionals until parents are at a heightened level of stress. This paper is based on a literature review of current articles, research papers and government documentation. The focus is on how health professionals, and nurses in particular should meet the emotional needs of parents who have child with complex needs, particularly at the point of diagnosis. Giving birth to a child with severe health problems impacts upon parents at an emotional time of transition, particularly if there were no concerns identified during pregnancy. For some parents a grief response or state of chronic sorrow may be triggered. The reality of caring for a baby who is critically ill or disabled can be an enormous and unexpected shock for both parents. Parents need emotional support and guidance, as they may have to change their expectations for their child’s development and even life span. Primary support often comes from parent support groups rather than health professionals. The review discusses how home visits, practical help and early support can all help to alleviate stress. It is important for nurses to realise that if parents’ emotional needs are unmet they can lead to clinical depression or mental illness. This literature review looks at the emotional impact on parents and explores how nurses can address this issue in order to support parents more effectively. It identifies key areas that nurses could address that would help alleviate parents’ emotional stress.

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.

Sign language in Spanish television. Study on reception

The present article analyses the preferences of the deaf who use sign language and are users of the TV interpretation service to sign language, as well as the characteristics with which TV channels provide that service in television in Spain. The objective is to establish whether the way in which the aforementioned accessibility service is provided matches the preferences of users or differ from them. The analysis presents the opinion on this service of the deaf that use the Spanish sign language as their first language for communication. A study has also been conducted on the programmes broadcast with sign language during week 10-16/03/2014. The main data collected reveal that the deaf are dissatisfied with broadcasting times. They ask for news programmes with sign language, they would rather have the interpretation carried out by deaf people who use sign language and they prefer that the interpreter is the main image on screen. Concerning the analysis of the programmes broadcast, the study shows that the majority of programmes with sign language are broadcast at night, they are entertainment programmes, the interpretation is carried out by hearing people who use sign language and that their image is displayed in a corner of the screen.

No Sense of an Ending: Researching the Experience of Imprisonment and Release upon Republican Ex-Prisoners

This article describes an interview-based study of the effects of long-term imprisonment upon 18 Republican ex-prisoners and their families. The interviews followed a biographical, narrative format, drawing from experience of psychiatric assessment of released long-term prisoners. Interpretation of the material was influenced by the sociological literature on imprisonment effects and war trauma. The ex-prisoners had spent an average of 11 years in custody. They described complex experiences of loss, psychological change and social integration, particularly in the area of employment. A decade after release some still had vivid difficulties in coming to terms with the losses of the past and finding purpose for the future. There were parallels between the experiences of this goup and those of war veterans returning home. There is insufficient recognition of these phenomena in previous research on the psychological effects of imprisonment.

'Chocolate makes you autism': impairment, disability and childhood identities

This paper discusses perceptions and experiences of impairment and disability from the perspectives of learning disabled children, their parents and their social workers. The author reports on findings from her doctoral study that adults often fail to take into account the views and experiences of learning disabled chidren. As a result, these children developed their own interpretations of impairment and disability based on their experiences and interactions with others. Whilst this indicates that they are active social interpreters, it also suggests that adults should make greater efforts to inform and consult learning disabled children. The author concludes by reflecting on the relevance of these findings to contemporary theories of disability and childhood.

The (in)visible scar. Representation of the body in blogs by women with breast cancer

In this paper we analyze the representation of the body in blogs by women with breast cancer. Taking into account both texts and images, we study the representation of the body on the basis of the body problems proposed by Frank (1995): control, body-relatedness, other-relatedness and desire. In the blogs studied we find a desiring and dyadic body, which is understood as part of a network of affection and care. The diagnosis of cancer can generate both dissociation, when the body is experienced as a threat, and association, a wish to be connected to it. In relation to control, a clear will of predictability is observed but traces of assumption of contingency also appear.

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

Background: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. Methods: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. Results: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. Conclusion: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias

Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study

Background

Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population.

Methods

1174 children aged 8–12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population.

Findings

Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7·6, 95% CI 2·7–12·4); intellectual impairment with reduced mean for moods and emotions (3·7, 1·5–5·9) and autonomy (3·3, 0·9–5·7); and speech difficulties with reduced mean for relationships with parents (4·5, 1·9–7·1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible.

Interpretation

Parents can be reassured that most children aged 8–12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, children's pain should be carefully assessed.

University students with disabilities in Universities. A study of their inclusion

Access to higher education has increased among students with disabilities, and universities are adopting different alternatives which must be assessed. The purpose of this study was to identify the situation of a sample of students with disabilities (n=91) who attend a university in Spain, through the design and validation of the “CUNIDIS-d” scale, with satisfactory psychometric properties. The results show the importance of making reasoned curriculum adaptations, adapting teacher training, improving accessibility and involving all the university community. Different proposals were provided which support the social dimension of the EHEA.