Resources search

Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

Expand view

The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Emergent Disability voices on Social Media during COVID -19 times

MEHROTRA, Nilika
2021

Expand view

Persons with disabilities are invisible and almost silent in the Indian media. This paper examines the emergence of articulate expressions of persons with disabilities (pwd) in the social media over the months March to June 2020 during COVID Lockdown. While technology has been seen as a great leveller for persons with disabilities, the digital divide, however, remains very real for masses of disabled persons, whereby it is largely the educated middle class who have access to internet facilities and presence on social media. This paper draws from observation and analysis of posts on Facebook by different categories of persons with disabilities. There appear to be a number of discourses emerging and imageries running almost parallel. Accessibility and support appear to be very important issues especially in terms of access to domestic workers, regular medical checkups, and procuring daily provisions as well as access to online teaching. On the other hand, little concern is being paid to the huge humanitarian crisis of returnee workers from cities to villages. Interestingly, disabled persons appeared more connected, participating in discussions and Webinars and voicing out their experiences with greater clarity and also analysing the COVID situation through Disability Studies (DS) perspectives.

When differences are made into likenesses: the normative documentation and assessment culture of the preschool

KARLSUDD, Peter
2021

Expand view

This article is based on studies carried out within the Young children’s learning research education programme. This undertaking involved five graduate students, all recruited from the Swedish preschool system. The licentiate thesis makes up the final product of their education programme, and the focus of each candidate’s licentiate thesis was preschool-level documentation. Using the results of all five theses, a re-analysis was conducted with the concept of normality as the common starting point. The purpose was to investigate whether documentation and assessment can change the view of normality in preschools, and furthermore, what consequences there may be for preschool activity. ‘The narrow preschool and the wide preschool’ is the model used to support the analysis, which is a model used in previous studies to review and discuss educational choices and conditions in the school system. Results of the present investigation show that the documents and assessments performed in preschool have a strong focus on the individual child and a traditional, school-oriented learning is highly valued. The documentation and assessment practices that take place now in our preschools, therefore, most likely influence the preschool view of normality and restrict the acceptance of differences.

Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

Expand view

Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

Expand view

Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

Expand view

Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Validation of the international classification of functioning, disability and health (ICF) core sets from 2001 to 2019 – a scoping review

KARLSSON, Elin
GUSTAFSSON, Johanna
February 2021

Expand view

Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.

 

Methods: The current study is a scoping review using a structured literature search.

 

Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.

 

Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.

Perspectives on access and usage of assistive technology by people with intellectual disabilities in the Western Cape province of South Africa: Where to from here?

BOOT, Fleur H
KAHONDE, Callista
DINSMORE, John
MACLACHLAN, Malcolm
2021

Expand view

Background: Whilst assistive technology (AT) can play an important role to improve quality of life, health inequity regarding access to appropriate AT for people with intellectual disabilities (ID) is still very much present especially in low resource countries.

 

Objectives: This study focused on exploring factors that influence access to and continued use of AT by people with ID in the Western Cape province of South Africa and to suggest potential implications of these findings and actions required to promote access to AT.

 

Method: A qualitative approach was used to explore the experiences of people with ID and providers of AT. Face-to-face interviews with 20 adults with mild to profound ID, and 17 providers of AT were conducted and the data were analysed thematically.

 

Results: People with ID within the study setting faced many challenges when trying to access AT and for those who managed to acquire AT, its continued usage was influenced by both personal characteristics of the user and environmental factors. Important factors that influence AT access and use for people with ID found in this study were (1) attitudes from the community, (2) knowledge and awareness to identify AT need and (3) AT training and instructions to support the user and care network.

 

Conclusion: With the perspectives of both the providers and users of AT, this study identified priority factors, which could be addressed to improve AT access and use for people with ID in the Western Cape province.

The invisible minority: why do textbook authors avoid people with disabilities in their books?

JENSEN, Magne Skibsted
HERREBRØDEN, Marte
ANDREASSEN, Ulf Rune
2021

Expand view

Representation of disability in school textbooks may influence pupils’ knowledge and perceptions of people with disabilities. The aim of this study was to investigate representation of people with disabilities in school textbooks. The study employed a mixed-methods approach. Quantitative frequency analysis was used to investigate the extent of representation of disabilities in texts and pictures in 78 Norwegian textbooks for Grades 5–10. Regarding texts, the results showed that people with disabilities were represented in less than half of these textbooks (49%). Concerning pictures, people with disabilities were even less represented, appearing in only 29% of the textbooks. These quantitative findings were supplemented by a qualitative survey of textbook authors, who were asked to explain the marked absence of disability references in their own books and in school textbooks in general. The two most frequent explanations were that textbook authors had either overlooked people with disabilities, or that the Norwegian National Curriculum (Kunnskapsdepartementet 2006. Lærerplanverket for Kunnskapsløftet (LK06) [The Norwegian National Curriculum]. https://www.udir.no/lk20/overordnet-del/) did not explicitly mention this minority. We discuss these explanations as expressions of conscious considerations rather than unconscious omissions.

Social classroom climate and personalised instruction as predictors of students’ social participation

ZURBRIGGEN, Carmen L A
HOFMANN, Verena
LEHOFER, Mike
SCHWAB, Susanne
2021

Expand view

Previous research has repeatedly confirmed that students with special educational needs (SEN) are generally less accepted by their peers. Although inclusive teaching strategies and classroom characteristics are frequently hypothesised to improve students’ social participation, empirical evidence is scarce. Therefore, the purpose of this paper is to investigate classroom characteristics and teaching practices that can help foster social participation, in general, and reduce the effect of lower social participation among students with SEN, in particular. The sample includes 518 students in 31 Grade 4 and 7 classes from Austria, of whom 99 are students with SEN. The results show that students with SEN receive fewer peer nominations and perceive their social participation to be lower compared to their peers without SEN. However, the association between SEN and self-perceived social participation is moderated by the social classroom climate, i.e. the difference becomes smaller when the social classroom climate is more positive. Furthermore, the higher the personalised instruction was rated by a student, the higher was his or her social status. The results suggest that interventions should focus not only on the improvement of individual students (with SEN) but also on changing the whole classroom environment.

Using the Service-Learning approach to bridge the gap between theory and practice in teacher education

RESCH, K
SCHRITTESSER, I
2021

Expand view

Service-Learning stands out as a teaching approach that connects theory and practice by giving students the opportunity both to participate in a service that meets community needs and to reflect on the experience in class in order to gain a deeper understanding of the course content and an enhanced sense of civic engagement. The advantages of Service-Learning for inclusive education have recently been underpinned by studies, in which pre-service teachers are exposed to diverse population groups in schools or communities. Our study explores how Service-Learning is applied in teacher education in Austria. It is based on a series of semi-structured interviews with 13 teacher educators who apply this form of teaching in cooperative projects with schools. Our findings suggest that teacher educators distinguish between five orientations in Service-Learning (connecting theory and practice, engagement, community needs, job-related skills, learning outside the classroom), take on distinct expert and support roles, and see multiple benefits in Service-Learning. Our study underlines the importance of Service-Learning for inclusive education and the value of preparing pre-service teachers for dealing with diverse groups of pupils by allowing them to experience the real-world problems that confront schools.

Bullying among primary school-aged students: which factors could strengthen their tendency towards resilience?

GANOTZ, Tanja
SCHWAB, Susanne
LEHOFER, Mike
2021

Expand view

Resilience is the capacity to cope successfully with various threats. This paper aims to adapt the Resilience-Scale of Schumacher et al. (2004. Die Resilienzskala – ein Fragebogen zur Erfassung der psychischen Widerstandsfähigkeit als Personmerkmal. [The Resilience Scale – A Questionnaire to Measure Mental Resilience as a Personal Characteristic]. Zentrum für Klinische Psychologie, Psychiatrie und Psychotherapie) to measure the tendency of being resilient even before a threat occurs. Since primary school students are exposed to various threats at school, 535 4th grade students of Austrian primary schools were surveyed for the study. The reliability of the short-scale was found to be acceptable (Cronbach’s α = .66), and the tendency towards resilience can be explained by the students’ perception of their social inclusion in class (F (1,252) = 15.11, p<.05) and the relationship with their mothers (F (2, 251) = 10, 02, p<.05). The stability of the students’ tendency of being resilient was only moderate. A similar correlation between resilience and school-wellbeing for victims and non-victims of bullying can be reported. Future studies should focus more on primary school students’ resilience and related protective factors.

Comprehensive support for pupils at risk of school failure in inclusive education: theory and school practice in the Czech Republic

SLOWÍK, Josef
GAŽÁKOVÁ, Eva
HOLEČEK, Václav
ZACHOVÁ, Markéta
2021

Expand view

The paper presents possibilities of comprehensive use of support tools for pupils at risk of school failure in the Czech primary schools practice in order to support the implementation of inclusive education. The research data obtained during the project implemented in the Pilsen region in period of 2016–2019 brought the results of assessment of new support tools that are not yet systemically introduced in the Czech educational system and commonly available for all schools, although these instruments seem to be very effective or even necessary for quality inclusive education. The most important new tools include the position of inclusion coordinator in schools, strengthening the counselling services available directly in schools, as well as new strategies for promotion of cooperation between the schools, families, and social services – including some specific techniques, such as parenting workshops on child support in education, case conferences with child’s participation or seminars for parents and teachers on collaboration with social services. However, the exploitation of the results of this research and assessment will depend largely on political decisions at both local and governmental levels.

Disabled children and work: An overview of a neglected topic with a specific focus on Ghana

WICKENDEN, Mary
February 2021

Expand view

This paper provides an overview of issues related to disabled children and work.

This is a very unexplored topic and the literature is scant, so the paper first provides an overview of some key relevant background information on: disability globally and in Ghana, disability and employment, disabled children and relevant human rights approaches – the UNCRC and UNCRPD. Next examples of research on disabled children and work are presented and lastly some suggested hypotheses and possible research questions are proposed

 

ACHA Working Paper 7
DOI: 10.19088/ACHA.2021.002

The definition of disability and disability related data collection and analyses - Applying the IASC Guidelines in the northwest Syria humanitarian response

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
February 2021

Expand view

Action by humanitarian partners to strengthen inclusion of persons with disabilities in the humanitarian response in an evidencebased manner remains highly needed – this note aims to support that effort by providing background and explanation on the definition of disability as well as on how to interpret and use data related to disability.

 

The note also provides elaboration on the Syria Protection Cluster (Turkey) recommended disability-related data collection methodology for humanitarian organizations and entities in northwest Syria. Thereby the note aims to stimulate and assist the broader humanitarian community in northwest Syria in adopting the Washington Group Short Set of Questions on Functioning, especially in relation to disability focused data collection and in understanding and utilizing assessment findings, specifically prevalence-rates of disability in northwest Syria.

 

For more elaborated description of the situation of persons with disability in northwest Syria and practical suggestions for humanitarians on enhancing inclusion of persons with disabilities in programming, this note is to be read in conjunction with the ITWG “Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria” brief report and recommendations.

 

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

Expand view

Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

The community-based actions that removed barriers to inclusive education in Kenya

ELDER, Brent C
PAYNE, Mbuh
OSWAGO, Benson
2021

Expand view

This article represents a culmination of inclusive education projects implemented in western Kenya since 2010. In this article, we discuss the 2018 iteration of this on-going community-based participatory research (CBPR)-informed project in which we utilised multiple theoretical frameworks to inform our methods in this project, including decolonising methodologies and Critical Disability Studies (CDS). We conducted qualitative interviews as a way to learn about the ways in which inclusion committees facilitated the partial removal of barriers to the development of an inclusive education system in the region over the last decade. In this article, we provide an overview of the barriers to inclusive education in the global South and sub-Saharan Africa, with a particular focus on western Kenya. We present findings that highlight the various inclusion committee actions that contributed to the partial removal of barriers which included: sensitising communities about inclusive education; promoting access to inclusive education; and implementing inclusive strategies like income generating activities (IGAs) and co-teaching. We conclude the article by suggesting potential ways forward for inclusive education in Kenya including: a multi-sector approach for family supports; providing government incentives to inclusive schools; and promoting IGAs and co-teaching practices in teacher education programs and in schools.

Greek Secondary Education Teachers’ Views on Inclusive Education of People with Intellectual Disabilities

GIAVRIMIS, Panagiotis
2021

Expand view

Purpose: This paper aimed to investigate Greek secondary education teachers’ views on people with intellectual disabilities, their inclusion in the typical educational system, and the dimensions of social and educational exclusion that may be associated with it.

 

Method: The qualitative research design involved semi-structured interviews with 18 Greek secondary school teachers.

 

Results: It was revealed that people with intellectual disabilities face educational exclusion for two reasons. The first is because the structure of the education system itself cannot meet their increased needs, and the second is due to the fact that a percentage of secondary education teachers feel negative about their inclusion in the typical education system.

 

Conclusion and Implications: The implemented policy for the co-education of people with intellectual disabilities in Greece is not effective due to endogenous difficulties. It is necessary to orient the educational policy towards an education for all without "filters" of social exclusions.

Impact of Visual Impairment and Correction on Vision-Related Quality of Life: Comparing People with Different Levels of Visual Acuity in Indonesia

WIDAGDO, T M M
RAPPUN, Y
GANDRUNG, A V
WIBOWO, E
2021

Expand view

Purpose: This study assessed the extent to which visual impairment impacts on vision-related quality of life in Indonesia, by comparing four groups of people: those with 1) normal vision, 2) corrected visual impairment, 3) uncorrected visual impairment, and 4) blindness.

 

Method: Purposive sampling was used. There were 162 respondents, between 21 and 86 years of age. Participants with normal vision and blindness were community-dwellers in Yogyakarta, Indonesia. Those with corrected and uncorrected visual impairment were recruited from an eye clinic. This cross- sectional study used NEI VFQ-25 to assess vision-related quality of life. The total scores and 11 NEI VFQ-25 subscales scores of four respondent groups were analysed using ANOVA, followed by post-hoc analyses to reveal between group differences.

 

Results: There was a significant difference in the NEI VFQ-25 total scores among the four respondent groups. Respondents with normal vision had the highest score and those with blindness had the lowest. There were also significant differences among the four groups for the 11 subscales. Post-hoc analyses revealed no significant difference between respondents with normal vision and corrected visual impairment in the total and 9 NEI VFQ-25 subscales. Respondents with uncorrected visual impairment and blindness had significantly lower vision- related quality of life compared to those with normal vision or corrected visual impairment in the total and 5 NEI VFQ-25 subscales, indicating that visual impairment decreases vision-related quality of life.

 

Conclusion: Visual impairment has a detrimental impact on a person’s vision- related quality of life. The negative impact of visual impairment can be minimised by correction. Failure to correct visual impairment leads to significantly lowervision-related quality of life.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

Expand view

Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Pages

E-bulletin