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Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

TEDROFF, Kristina
GYLLENSVARD, Mirja
LOWING, Kristina
September 2019

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Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

 

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

 

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

 

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

The concept of welfare technology in Swedish municipal eldercare

FRENNERT, Susanne
BAUDIN, Katarina
September 2019

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Purpose: An ageing population presents a challenge for municipal eldercare in Sweden due to difficulties recruiting staff and there being a strained economy. A strategy involving welfare technology is presented as one such solution. An important group to carry out this strategy involves those who work with welfare technology in municipal eldercare. In this paper we describe their perception of welfare technology, and the challenges and opportunities they perceive in utilizing it.

 

Methods: A self-administered online questionnaire was distributed to all Swedish municipalities and answered by 393 respondents. Analyses show that the respondents were representative of the different professions who work with welfare technology within municipal eldercare.

 

Results: Welfare technology was perceived as being more reliable and safer than humans with regards to supervisions and reminders. The respondents acknowledged factors that slowed down the implementation of welfare technology in municipal eldercare organizations, such as resistance to change, lack of finances, lack of supporting evidence, lack of infrastructure, high staff turnover, difficulties with procurement and uncertainties about responsibility and laws.

 

Conclusions: We found that the people who work with and make decisions about welfare technology in municipal eldercare organizations were generally very positive about the deployment and use of such technology, but there appear to be problems within municipal eldercare organizations to realize this vision. The lack of structured implementation processes and coherent evaluation models indicates inequality of the access to welfare technology and, as a result, even though Swedish eldercare is publicly funded, the availability of welfare technologies and their usage differ between municipalities.

Seeking a disability lens within climate change migration discourses, policies and practices

BELL, Sarah
TABE, Tammy
BELL Stephen
August 2019

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Focusing primarily on examples from the Asia-Pacific region (a region including low-lying coastal areas and islands that are frequently highlighted as exemplars of communities on the front line of climate change), this article discusses the need to integrate critical insights from disability studies into current understandings of climate change adaptation and mobility if we are to facilitate more inclusive, democratic and equitable adaptation in the face of climate change

 

Disability & Society, Volume 35, 2020 - Issue 4

https://doi.org/10.1080/09687599.2019.1655856

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Effects of assistive technology for students with reading and writing disabilities

SVENSSON, Idor
NORDSTRÖM, Thomas
LINDEBLAD, Emma
GUSTAFSON, Stefan
BJÖRN, Marianne
SAND, Christina
ALMGREN/BÄCK, Gunilla
NILSSON, Staffan
2019

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Background: 

Assistive technology has been used to mitigate reading disabilities for almost three decades, and tablets with text-to-speech and speech-to-text apps have been introduced in recent years to scaffold reading and writing. Few scientifically rigorous studies, however, have investigated the benefits of this technology.

 

Purpose: 

The aim was to explore the effects of assistive technology for students with severe reading disabilities.

 

Method: 

This study included 149 participants. The intervention group received 24 sessions of assistive technology training, and the control group received treatment as usual.

 

Results: 

Both the intervention and control groups improved as much in 1 year as the normed population did. However, gains did not differ between the groups directly after the intervention or at 1 year of follow-up.

 

Conclusions: 

The use of assistive technology seems to have transfer effects on reading ability and to be supportive, especially for students with the most severe difficulties. In addition, it increases motivation for overall schoolwork. Our experience also highlights the obstacles involved in measuring the ability to assimilate and communicate text.

The Convention on the Rights of Persons with Disabilities and the Islamic Tradition: The question of legal capacity in focus

GHALY, Mohammed
2019

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Legal capacity of persons with mental disabilities was a con- tentious issue during the process of drafting the Convention on the Rights of Persons with Disabilities. The Arab Group, consisting of Muslim-majority countries, in the United Nations expressed reservations about the formulation of the Article related to this issue. However, their reservations were dis- missed because they arguably had to do with language-specificity. The author revisits these deliberations and argues that the reservations of the Arab countries have to do with reli- gious aspects rooted in the Islamic tradition. By ignoring these religious aspects, the Disability Convention missed a rich source of wisdom provided by a world religion like Islam. On the other hand, the innovative insights provided by the Disability Convention can be of value to improve contemporary discussions on legal capacity within the Islamic tradition. Unlike the previous studies, which either focused on the approach of the Disability Convention or that of the Islamic tradition, this study examines both approaches and highlights the points of agree- ment and disagreement and finally proposes suggestions for narrowing the existing gap between these two approaches.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

The regressive power of labels of vulnerability affecting disabled asylum seekers in the UK

YEO, Rebecca
2019

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There has been some progress in the United Kingdom regarding official recognition of the existence and needs of disabled asylum seekers and refugees. However, references are commonly accompanied by euphemistic labels, particularly of ‘vulnerability’. This should be understood in the context of systematic reduction of services and support available to the wider population of asylum seekers and disabled people in the United Kingdom. I argue that these processes reinforce each other and that both undermine a rights-based approach. Focusing on recent asylum and immigration policies, I explore how labels of ‘vulnerability’ obscure systemic oppression and distract from the rights and achievements of disabled people. The regressive elements of vulnerability discourse are presented as if better than nothing. Such discourse risks reinforcing hegemonic acceptance of distinctions of human worth, with detrimental impact for migrants and citizens alike.

Between duty and right: disabled schoolchildren and teachers’ ableist manifestations in Sweden

GILLBERG, Claudia
PETTERSSON, Andreas
2019

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In this article we discuss ableist manifestations about chronically ill and disabled schoolchildren in Sweden. On claiming their right to schooling, these children risk being excluded due to not conforming with norms while being refused alternative formats that would enable participation. They are then accused of not attending school and construed as problematic. Parents are derided as mollycoddling perpetrators by teachers who perceive themselves as superior knowers of disability and illness, polarising an already infected school debate. Alternative formats for participation are derided, claiming that certain disabilities do not exist or that parents exaggerate their children’s symptoms. We concede that teachers’ poor work environments due to underfunding and unreasonable workloads are problematic, but we are adamant that unfavourable work conditions must not entail unethical professional conduct. We hope this article will contribute to putting the situation of chronically ill and disabled schoolchildren in Sweden on the radar of Critical Disability Studies as well as in relevant fields of practice and that it might stimulate a change in public debate.

Teaching disability: strategies for the reconstitution of disability knowledge

DÍAZ, Karim Del Rocío Garzón
GOODLEY, Dan
2019

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As teachers of disability studies, working with students from the health and psychological sciences, we tackle some of our pedagogical challenges and offer productive possibilities. We begin by introducing the offerings of disability studies and then consider our first question: how might we invite disability into our teaching? We introduce a Spanish tale – Por cuatro esquinitas de nada – that, while aimed at children and not explicitly engaged with a disability, permits us to engage in inter-textual analyses of disability. We find that students move through different stages of what we term distinction, idealisation and invisibility/concealment. We then address our second question – what does it mean to teach disability? We answer this with reference to the generative practices of two teaching methodologies: disposal and disavowal. We conclude the paper by considering the importance of generating critical theories of disability.

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

Design of the user interface for “Stappy”, a sensor-feedback system to facilitate walking in people after stroke: a user-centred approach

JIE, Li-Juan
JAMIN, Gaston
SMIT, Kate
BEURSKENS, Anna
BRAUN, Susy
2019

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Introduction: 

Sensor-feedback systems can be used to support people after stroke during independent practice of gait. The main aim of the study was to describe the user-centred approach to (re)design the user interface of the sensor feedback system “Stappy” for people after stroke, and share the deliverables and key observations from this process.

 

Methods: 

The user-centred approach was structured around four phases (the discovery, definition, development and delivery phase) which were fundamental to the design process. Fifteen participants with cognitive and/or physical limitations participated (10 women, 2/3 older than 65). Prototypes were evaluated in multiple test rounds, consisting of 2–7 individual test sessions.

 

Results: 

Seven deliverables were created: a list of design requirements, a personae, a user flow, a low-, medium- and high-fidelity prototype and the character “Stappy”. The first six deliverables were necessary tools to design the user interface, whereas the character was a solution resulting from this design process. Key observations related to “readability and contrast of visual information”, “understanding and remembering information”, “physical limitations” were confirmed by and “empathy” was additionally derived from the design process.

 

Conclusions: 

The study offers a structured methodology resulting in deliverables and key observations, which can be used to (re)design meaningful user interfaces for people after stroke. Additionally, the study provides a technique that may promote “empathy” through the creation of the character Stappy. The description may provide guidance for health care professionals, researchers or designers in future user interface design projects in which existing products are redesigned for people after stroke.

What sort of ‘inclusion’ is Continuing Professional Development promoting? An investigation of a national CPD programme for inclusive physical education

MAKOPOULOU, Kyriaki
PENNEY, Dawn
NEVILLE, Ross
THOMAS, Gary
2019

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Inclusion is positioned at the forefront of global educational reform. The study reported focused on a national Continuing Professional Development (CPD) programme for Inclusive Physical Education (IPE) in England. The research was designed to critically explore how CPD providers (i.e. tutors) variously conceptualised and practiced inclusion in the context of running a day-long CPD course for physical education teachers. Using qualitative methodology, data were collected via course observations (n= 27), informal interviews with tutors (n = 10), and a tutor questionnaire (n = 18). Findings suggest that although tutors’theoretical interpretations of inclusion were largely consistent with contemporary, broad understandings, there was notable variability and inherent tensions in the ways they talked about and enacted inclusion in practice. In many instances, inclusion was infused with particular perceptions about ability and ability grouping. Only a small number of tutors encouraged teachers to question and ‘disturb’ their current practices. Findings from this research extend insights into the contested nature of inclusion in contemporary PE and highlight the need for research to engage with multiple stakeholders in physical education teaching and CPD. This research reflects that CPD providers have a key role to play in extending teachers’ understandings of inclusive pedagogy

How inclusive are the teaching practices of my German, Maths and English teachers? – psychometric properties of a newly developed scale to assess personalisation and differentiation in teaching practices

SCHWAB, Susanne
SHARMA, Umesh
HOFFMANN, Lisa
2019

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Within the current policy and legislative context of educating students with and without special educational needs (SEN) together in one classroom, the question that is frequently raised by educators relates to how best to implement inclusion and meet the different needs of their students in class. It is also important to understand all students’ perceptions about being included in regular classrooms. Therefore, the study examined secondary school students’ perceptions about the use of inclusive teaching practices by their different subject teachers. The main objective was to report on the psychometric properties of a newly developed questionnaire measuring students’ perceptions about their teachers’ use of inclusive teaching practices. A total of 665 secondary grade students rated the use of inclusive teaching practices for their two main subject teachers (German, Maths or English). The study found that the 14-item scale had high reliability (α = ranging 0.81 for German to 0.87 for English teachers) and consisted of two factors (‘Personalisation’ and ‘Differentiation’). According to the students’ perceptions, all subject teachers used some inclusive practices but they were not highly inclusive. A comparison showed that Maths teachers were more inclusive compared to their German counterpart. Implications for school educators and researchers are discussed.

An amalgam of ideals – images of inclusion in the Salamanca Statement

MAGNÚSSON, Gunnlaugur
2019

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The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

Associations between occupational and social interaction factors and well-being among people with psychiatric disabilities living in supported housing in Sweden

EKLUND, Mona
TJÖRNSTRAND, Carina
2019

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Research indicates that occupation is important for well-being in people with mental illness, but this has not been extensively studied among those with severe psychiatric disabilities. Social contacts may possibly play a more vital role for them. This study aimed to explore how aspects of occupation and social interaction were related with well-being factors in that group, while controlling for the influence of clinical factors. People with psychiatric disabilities living in congregate supported housing (CSH; N = 155) responded to questionnaires addressing occupation, social contacts and well-being aspects, such as subjective health, quality of life, self-mastery, and personal recovery. A comparison group with psychiatric disabilities who lived in an ordinary flat or house and received outreach housing support (N=111) completed the same instruments. The two groups were compared regarding their pattern of associations between occupation, social contacts, and well-being. Associations between occupation and well-being in the CSH group showed that general satisfaction with everyday occupations in particular was related to all aspects of well-being, whereas activity level and occupational balance were not related to well-being. The relationships were fewer and weaker, in comparison to the group in ordinary housing with outreach support. Indicators of social contacts were basically unrelated to well-being. The study contributes to occupational science by showing that the role of a high activity level for well-being, although important, should not be overemphasized. Future research should focus on narratives to get the voices of people residing in CSH and on exploration of how individually/socially performed occupations are associated with well-being.

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