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The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Work conditions, support, and changing personal priorities are perceived important for return to work and for stay at work after stroke – a qualitative study

LINDGREN, Ingrid
Brogårdh, Christine
PESSAH-RASMUSSEN, Helene
JONASSON, Stina B
GARD, Gunvor
2020

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Purpose: To explore work related and personal facilitators and barriers for return to work (RTW) and stay at work after stroke.

 

Materials and methods: Twenty individuals post-stroke (median age 52 years; seven women) were inter- viewed in focus groups. Data were analyzed by using qualitative content analysis.

 

Results: An overall theme “Work conditions, support and changed personal priorities influenced RTW and stay at work after stroke” emerged and covered three categories: “Adjustments and flexibility at the work place facilitated RTW and a sustainable work situation”, “Psychosocial support and knowledge about stroke consequences facilitated work and reduced stress”, and “Changed view of work and other personal priorities”. Physical adjustments at the work place and flexibility in the work schedule were perceived facilitators. Support from family and colleagues were important, whereas lack of knowledge of stroke dis- abilities at the work place was perceived a barrier. Also changed personal priorities in relation to the work and the current life situation influenced RTW in various ways.

 

Conclusions: The individual’s opportunities to influence the work situation is a key factor for RTW and the ability to stay at work after stroke. Adjustments, flexibility, support, knowledge of stroke, and receptiv- ity to a changed view of work are important for a sustainable work situation.

Looking under the veil: Challenges faced by people with disabilities in cross-border entrepreneurship

MATSAURE, Keresencia
CHINDIMBA, Agness
ZIMANO, Felistas R
RUFFIN, Fayth
September 2020

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Background: Cross-border entrepreneurship is one source of livelihood that is transforming people’s lives, especially those with limited resources and educational qualifications and those in need of supplementary earnings to complement meagre formal earnings. However, despite strides made to make this avenue worthwhile, this Zimbabwean study shows that hidden hindrances still persist from procedural and structural barriers from road entry point management systems. To people with disabilities (PWDs), the impact of these hidden barriers is severe to the extent of obstructing their optimum progression into cross-border entrepreneurship.

 

Objectives: This article sought to interrogate some veiled challenges in border management systems affecting PWDs’ quest to venture into cross-border entrepreneurship. This angle has, to this end, been timidly addressed as most organisations and legislation have concentrated on making things work for the majority of the populace.

 

Method: Qualitative phenomenological method in which researchers’ lived experiences, review of literature, ideas and opinions is complemented by secondary survey data from a road entry point management system study in the Zimbabwean setting.

 

Results: Cross-border entrepreneurship has potential to transform people’s lives: 1) road and border management systems’ procedural and structural complications present hidden challenges impeding PWDs’ entry and optimum participation in cross border entrepreneurship, 2) people with disabilities are not automatically dependents; in fact, most have dependents looking up to the, 30 social construction of disability persists and must be curbed and 4) there is a need to institute a ‘stakeholders triad approach’.

 

Conclusion: The existing road entry points’ management systems are not informed by considerations from PWDs, hence the existence of hidden challenges. Cross-border entrepreneurship can open significant livelihood avenues to PWDs. A stakeholders ‘triad-approach’, proposed herein, can solve some of the policy discrepancies as it recommends utilising inputs from PWDs, research and policy-makers.

 

African Journal of Disability, Vol 9, 2020 

The impact of Covid-19 on people with disabilities – emerging findings

ROHWERDER, Brigitte
THOMPSON, Stephen
WICKENDEN, Mary
WAKOKO, Eric
AKTER, Fatema
NJUNGI, Josephine
CHUBA-UZO, Shadrach
September 2020

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Emerging evidence suggests that people with disabilities are amongst the groups most affected by the COVID-19 pandemic in all aspects of their lives. In order to provide more systematic evidence, narrative interviews were conducted with a diverse group of 40 jobseekers with disabilities in Bangladesh, Kenya, Nigeria, and Uganda who are involved with the Inclusion Works programme. The first round of interviews were conducted in July and August 2020. Initial key findings are given.

 

Inclusion of persons with disabilities in the COVID-19 response: Applying the IASC Guidelines

Professionals in Humanitarian Assistance and Protection (PHAP)
September 2020

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On 17 September 2020, during a webinar organized jointly by ICVA, PHAP, IASC, and the Reference Group on Inclusion of Persons with Disabilities in Humanitarian Action, we discussed how the IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action can be implemented in the COVID-19 response. We started with a presentation of the recent note produced by the Reference Group and endorsed by the IASC on this topic, followed by a discussion of challenges in the current response and ways to overcome them.

The webinar shared practical examples of how response to COVID-19 in humanitarian contexts has been made more inclusive of persons with disabilities, drawing on learning from the past 6+ months to present concrete actions that humanitarian actors can take, in partnership with local organizations of persons with disabilities. The webinar aimed to provide a space for learning and exchange of experience between organizations of persons with disabilities, NGOs, UN entities, and other humanitarian actors.

Disability inclusive health, WASH and livelihoods in the COVID-19 response - Thematic guidance notes

AUSTRALIAN HUMANITARIAN PARTNERSHIP (AHP)
September 2020

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Practical guidance has been developed for disability inclusion within the priority sectors of Health, WASH, and Livelihoods and Food Security. This guidance has been developed to inform the AHP Disaster READY program and COVID-19 humanitarian response efforts, and contribute to sectoral understanding of inclusive humanitarian response and disaster preparedness.

Disability inclusion in the Western Balkans and Eastern Partnership countries. Disability Inclusion Helpdesk Report No: 51.

CORBY, Nick
CLUGSTON, Naomi
September 2020

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This briefing note provides guidance on how to incorporate disability inclusion within economic and governance reform projects. It is intended to inform the UK Foreign, Commonwealth and Development Office’s (FCDO) Good Governance Fund (GGF). This Note provides basic, introductory guidance on disability inclusion to FCDO advisers and managers engaging with economic and governance reform and sets out opportunities for the FCDO’s programmes and policy dialogue to deliver positive impacts for people with disabilities. The Note addresses three key questions: 2 1. What is the broad status of the rights of people with disabilities in GGF countries and are there any significant differences between the countries? 2. What are the recommended entry points for incorporating disability inclusion within economic and governance reform projects within the five GGF thematic areas? 3. How should the GGF incorporate disability inclusion into the next business case?

 

An annex provides short notes on several factors for each country. The factors are: the legal framework; disability prevalence; economic inclusion; social inclusion; institutionialisation; access to justice; receptions and representation in the media.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Recommendations for studies on dynamic arm support devices in people with neuromuscular disorders: a scoping review with expert-based discussion

ESSERS, J M N
MURGIA, A
PETERS, A A
JANSSEN, M M H P
MEIJER, K
2020

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Purpose

Neuromuscular disorders are characterised by muscle weakness that limits upper extremity mobility, but can be alleviated with dynamic arm support devices. Current research highlights the importance and difficulties of evidence-based recommendations for device development. We aim to provide research recommendations primarily concerning upper extremity body functions, and secondarily activity and participation, environmental and personal factors.

 

Methods

Evidence was synthesised from literature, ongoing studies, and expert opinions and tabulated within a framework based on a combination of the International Classification of Functioning, Disability and Health (ICF) model and contextual constructs.

 

Results

Current literature mostly investigated the motor capacity of muscle function, joint mobility, and upper body functionality, and a few studies also addressed the impact on activity and participation. In addition, experts considered knowledge on device utilisation in the daily environment and characterising the beneficiaries better as important. Knowledge gaps showed that ICF model components and contextual constructs should be better integrated and more actively included in future research.

 

Conclusions

It is recommended to, first, integrate multiple ICF model components and contextual constructs within one study design. Second, include the influence of environmental and personal factors when developing and deploying a device. Third, include short-term and long-term measurements to monitor adaptations over time. Finally, include user satisfaction as guidance to evaluate the device effectiveness.

Measure It Super Simple (MISS) activity tracker: (re)design of a user-friendly interface and evaluation of experiences in daily life

UMMELS, Darcy
BRAUN, Susy
STEVENS, An
BEEKMAN, Emmylou
BEURSKENS, Anna
2020

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Purpose

The purposes of this study were, first, to (re)design the user-interface of the activity tracker known as the MOX with the help of input from elderly individuals living independently and, second, to assess the use of and experiences with the adapted Measure It Super Simple (MISS) activity tracker in daily life.

 

Methods

The double diamond method, which was used to (re)design the user-interface, consists of four phases: discover, define, develop, and deliver. As a departure point, this study used a list of general design requirements that facilitate the development of technology for the elderly. Usage and experiences were assessed through interviews after elderly individuals had used the activity tracker for 2 weeks.

 

Results

In co-creation with thirty-five elderly individuals (65 to 89-years-old) the design, feedback system, and application were further developed into a user-friendly interface: the Measure It Super Simple (MISS) activity. Twenty-eight elderly individuals (65 to 78-years-old) reported that they found the MISS activity easy to use, needed limited help when setting the tracker up, and required limited assistance when using it during their daily lives.

 

Conclusions

This study offers a generic structured methodology and a list of design requirements to adapt the interface of an existing activity tracker consistent with the skills and needs of the elderly. The MISS activity seemed to be successfully (re)designed, like the elderly who participated in this pilot study reported that anyone should be able to use it.

Does the purpose matter? A comparison of everyday information and communication technologies between eHealth use and general use as perceived by older adults with cognitive impairment

JAKOBSSON, Elin
NYGÅRD, Louise
KOTTORP, Anders
OLSSON, Cecilia Bråkenhielm
MALINOWSKY, Camilla
2020

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Background and objective

Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use.

 

Methods

This cross-sectional study includes 32 participants (65–85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher’s exact tests. The significance level was set to p < .05.

 

Results

The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use.

 

Conclusions

In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.

Novel lateral transfer assist robot decreases the difficulty of transfer in post-stroke hemiparesis patients: a pilot study

KOYAMA, Soichiro
TANABE, Shigeo
OTAKA, Yohei
KATO, Tomoya
FURUZAWA, Shotaro
TATEMOTO, Tsuyoshi
KUMAZAWA, Nobuhiro
YOSHIMUTA, Hiroshi
TORII, Katsuhiko
TSUKADA, Shingo
SAITOH, Eiichi
et al
2020

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Purpose

The purpose of this study was to clarify whether the novel lateral transfer assist robot facilitates easier transfers compared with a wheelchair in post-stroke hemiparesis patients.

 

Methods

This cross-sectional study enrolled 20 post-stroke hemiparesis patients, and the task difficulty of transfers was compared between a wheelchair and lateral transfer assist robot. All participants were asked to transfer from either wheelchair or lateral transfer assist robot to a platform table and back. The primary outcome was the transfer score of the Functional Independence Measure. The secondary outcome was the time required for transfer.

 

Results

The transfer score of the Functional Independence Measure was significantly higher with lateral transfer assist robot than with wheelchair (p < .001). The transfer times from these devices to a platform table and back showed no significant differences (to device from platform table: 7.8 s, lateral transfer assist robot vs 7.6 s, wheelchair, p > .05: device to platform table: 7.1 s, lateral transfer assist robot vs 8.0 s, wheelchair, p > .05).

 

Conclusions

Transfer with a lateral transfer assist robot is easier than with wheelchair and facilitates independence in post-stroke hemiparesis patients.

Smartphone apps for transportation by people with intellectual disabilities: are they really helpful in improving their mobility?

ALANAZI, Adel
2020

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Purpose

The paper undertakes a critical assessment of the use of smartphone apps for transportation by people with intellectual disabilities. Although apps for transportation such as Uber and Careem have been developed to assist people with disabilities and have numerous benefits, people with intellectual disabilities tend to encounter their own set of difficulties in accessing these apps.

 

Materials and method

This paper presents the research findings drawn from a focus group discussion conducted with nine people with moderate to mild intellectual disabilities in Riyadh, by using a qualitative study focussed on the interpretative paradigm.

 

Results

From the interview findings, some relevant themes were identified. These were: transportation issues encountered by people with intellectual disabilities, the extent and manner of the use of smartphone apps for transportation, the benefits enjoyed by those individuals in using smartphone apps for transportation and the difficulties encountered by them.

 

Conclusions

The paper also discusses the implications for practice and presents some useful recommendations, including the need for family support and government assistance.

Employment of young people with mental health conditions: making it work

SUBRAMANIAM, Mythily
ZHANG, Yunjue
SHAHWAN, Shazana
VAINGANKAR, Janhavi Aijt
SATGHARE, Patrika
LIN TEH, Wen
ROYSTONN, Kumarasan
MING JANRIUS GOH, Chong
MANIAM, Yogeswary
LIANG TAN, Zhuan
TAY, Benjamin
VERMA, Swapna
ANN CHONG, Siow
2020

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Purpose: The current study was undertaken to understand and describe the meaning of work as well as the barriers and facilitators perceived by young people with mental health conditions for gaining and maintaining employment.


Materials and Methods: Employing a purposive and maximum variation sampling, 30 young people were recruited and interviewed. The respondents were Singapore residents with a mean age of 26.8 years (SD 1⁄4 4.5, range 20–34years); the majority were males (56.7%), of Chinese ethnicity (63.3%), and employed (73.3%), at the time of the interview. Verbatim transcripts were analysed using inductive the- matic analysis.

 

Results: Three global themes emerged from the analyses of the narratives, which included (i) the mean- ing of employment, (ii) barriers to employment comprising individual, interpersonal and systemic difficul- ties and challenges participants faced while seeking and sustaining employment and (iii) facilitators of employment that consisted of individual and interpersonal factors that had helped the young persons to gain and maintain employment.

 

Conclusions: Stigma and discrimination emerged as one of the most frequently mentioned employment barriers. These barriers are not insurmountable and can be overcome both through legislation as well as through the training and support of young people with mental health conditions.

Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies

HASHEMI, Goli
WICKENDEN, Mary
BRIGHT, Tess
KUPER, Hannah
2020

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Background: Access to healthcare contributes to the attainment of health and is a fundamental human right. People with disabilities are believed to experience widespread poor access to healthcare services, due to inaccessible environments and discriminatory belief systems and attitudes. Qualitative data on these bar- riers has not previously been systematically reviewed. A meta-synthesis was undertaken of qualitative studies exploring the barriers to primary healthcare services experienced by people with disabilities in low- and mid- dle-income countries.

 

Methods: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eli- gible studies were identified.

 

Results: Findings suggest that the people with disabilities’ choice to seek healthcare services or not, as well as the quality of intervention provided by primary healthcare providers, are influenced by three types of barriers: cultural beliefs or attitudinal barriers, informational barriers, and practical or logis- tical barriers.

 

Conclusion: In order to achieve full health coverage at acceptable quality for people with disabilities, it is necessary not only to consider the different barriers, but also their combined effect on people with dis- abilities and their households. It is only then that more nuanced and effective interventions to improve access to primary healthcare, systematically addressing barriers, can be designed and implemented.

A glimpse into smartphone screen reader use among blind teenagers in rural Nepal

SANKHI, Prakash
SANDNES, Frode Eika
2020

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Purpose

Access to appropriate assistive technology is a challenge worldwide and especially in low GDP-per-capita countries. Nepal is one example of a country with several coinciding challenges: some claim having a high rate of blindness in the general population, a low-GDP-per capita and some studies claim it has a low literacy rate, especially in rural areas. Without appropriate assistive technology, some disabled youth may not get full access to education.

 

Methods

To gain insight into assistive technology use in rural Nepal, five blind teenagers in a mixed secondary school with disabled and non-disabled students in rural Nepal were interviewed about their daily smartphone use.

 

Results

The results show that all the participants used screen readers on donated smartphones. None of the participants had received formal training in using smartphone screen readers and therefore lacked knowledge about basic and essential operational aspects of the devices as well as misguided expectations about the technology.

 

Conclusions

One implication of the findings is that smartphone accessibility features training material needs to be made easily available to schools and all disabled youth worldwide, as smartphones are increasingly becoming available in low-income remote regions with low literacy rates. The built-in accessibility features of smartphones promise disabled youth a non-stigmatizing platform for social participation and access to the information society.

The impact of special education resources and the general and the special education teacher’s competence on pupil mathematical achievement gain in inclusive classrooms

OPITZ, Elisabeth Moser
SCHNEPEL, Susanne
KRÄHENMANN, Helena
JANDL, Sarah
FELDER, Franziska
DESSEMONTET, Rachel Sermier
2020

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Research in inclusive settings is complicated by the nested relationships between the general education teacher (GET), the special education teacher (SET) and pupils. In this study, the impact of SET resource and selected variables of teacher competence (professional mathematical knowledge SET, attitude towards inclusion GET, classroom management GET) on the mathematical achievement gain of typically developing pupils (TYP) and pupils with intellectual disability (ID) was examined. Mathematical achievement was tested at the beginning of the school year (t1) and the end (t2) in 34 inclusive classrooms (sample ID: n = 42; sample TYP n = 525). IQ and gender – and the average mathematical achievement at class level in the sample TYP – were included as control variables. For pupils with ID, hierarchical regression modelling revealed that the mathematical knowledge at t1 explained most of the variance in mathematical achievement gain. For the group TYP, the results of a multi-level analysis showed that mathematical knowledge at t1, IQ and the average mathematical achievement at class level all had a positive effect on mathematical achievement gain. The more hours a SET was present in the classroom, the more the mathematical achievement of the group TYP increased. The other teacher competence variables had no apparent impact.

Special education reforms in Ireland: changing systems, changing schools

KENNY, Neil
MCCOY, Selina
MIHUT, Georgiana
2020

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Ireland has a distinct and complex history regarding the education of persons with special educational needs (SEN) and in its approach to inclusion. Special and general education largely developed in parallel and separately. As recently as the 1990s, legal actions by parents seeking educational rights for children with severe disabilities prompted appropriate provision for these students and a shift towards inclusive schools. The Education for Persons with Special Educational Needs (EPSEN) Act set out important changes – although not all implemented – followed by a series of changes in resource allocation, culminating in the removal of the requirement for students to be diagnosed in order to access supports. International evidence suggests that resource allocation based on learners’ profile and SEN diagnosis have been linked to the overidentification of SEN students. Ability to pay for private assessments has also been shown to exacerbate inequality in Ireland and beyond. We examine how Ireland's policy changes are impacting on schools and students, drawing on emerging evidence. We consider concerns over the adequacy of teacher professional development, the intended and potentially unintended consequences from a process of ‘domestication’ at the school level and ultimately whether the changes are accompanied by sufficient and appropriate accountability measures.

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