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

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

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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

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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.

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

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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.

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

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

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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.

Social media and disability advocacy organizations: caught between hopes and realities

GELFGREN, Stefan
INELAND, Jens
COCQ, Coppélie
2021

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This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.

Education, girl, disability: an equation to solve. Ensuring the right to education for girls with disabilities in the Sahel

HUMANITY & INCLUSION (HI)
January 2021

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Most girls with disabilities do not have the opportunity to access education and to thrive in school. They are exposed to multiple  discrimination owing to their identity as girls and as children with disabilities. Comprehensive measures are needed to ensure their right to inclusive and quality education.

The factsheet builds on the findings of a research conducted by Humanity & Inclusion in Burkina Faso, Mali, and Niger and conveys messages and recommendations aiming to inspire action and thus improve educational opportunities for girls with disabilities.

Key recommendations so that girls with disabilities are not left behind are made to governments, donors and civil society organisations

People with Physical Disabilities playing Light Volleyball: A Qualitative Study in Hong Kong

Leung, Ka Man
Chu, William
Wong, Ming-Yu
2020

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Purpose: This study aimed at understanding the perceptions of people with physical disabilities regarding playing Light Volleyball (LVB), identifying the possible constraints and risks they might face while playing, and providing their suggestions for fine-tuning the Light Volleyball intervention programmes.

 

Method: Four focus group interviews were conducted with 17 participants who joined the Light Volleyball trial programme. The participants were 11 males and 6 females, with an average age of 53.5 years (SD=11.83 years). People with poliomyelitis (n = 15), spinal cord injury (n = 1), hearing impairment (n = 1) were included.

 

Results: Participants indicated improved reactivity and coordination, cooperation in team, happiness, and novelty in general as positive outcomes while playing Light Volleyball. They preferred to play in the seated position (i.e., sitting light volleyball - SLVB), and with simpler rules. They believed that their ability to play Light Volleyball was subject to their body constraints.

 

Conclusion: Sitting Light Volleyball can be one of the new physical activity options for future sport promotion among people with physical disabilities in the community. The effectiveness of playing Sitting Light Volleyball in enhancing health among people with physical disabilities needs to be studied in future.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

An overview of assistive technology products and services provided in Malawi

SMITH, Emma M
EBUENYI, Ikenna D
KAFUMBA, Juba
JAMALI-PHIRI, Monica
MACLACHLAN, Malcolm
MUNTHALI, Alister
2020

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Background

Assistive technology is the products and services used by individuals with functional limitations to enable participation in society and realisation of rights afforded by the United Nations Convention on the Rights of Persons with Disabilities. The Assistive Product List is a comprehensive list of products identified as essential for access through universal health coverage. Key stakeholders, including organisations of persons with disabilities, civil service organisations, academic organisations and government ministries are collaborating to integrate assistive technology into policy and develop a priority assistive products list for Malawi.

 

Objective

To understand the organisational characteristics of, and assistive products provided by, key stakeholders working in AT in Malawi.

 

Study Design

Online survey of representatives from key stakeholder organisations.

 

Methods

We surveyed representatives of key stakeholder organisations to gather information regarding assistive technology product and service provision in Malawi. Responses were analysed using counts for closed-ended questions, and conventional content analysis for open-ended questions.

 

Results

A total of 36 of the 50 APL products were provided by eight organisations. Related services were provided for 36 of the 50 APL products by twelve organisations. Five organisations reported providing both products and services. Products and services are largely funded by donation and provided free to those who require them.

 

Conclusion

A range of organisations in Malawi play a role in assistive product delivery and related services. Coordinated AP delivery and service provision is required at a national level which is sustainable and inclusive, and is based on identified needs of the Malawian population.

International Summit on Legal Professionals with Disabilities

INDIAN LAW SOCIETY
OXFORD HUMAN RIGHTS HUB
HARVARD LAW SCHOOL PROJECT ON DISABILITY
CENTRE FOR DISABILITY STUDIES, UNIVERSITY OF LEEDS
December 2020

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3-day Summit with three panel discussions by disabled legal professionals to foster a well-considered dialogue on how we can break down the structural and attitudinal barriers that prevent disabled legal professionals from leading lives of equal productivity and dignity as their able-bodied counterparts.

The themes for the days were: Day 1 - Academicians; Day 2 - Lawyers; Day 3 - Judges 

Rights of persons with disabilities : note / by the Secretary-General

DEVANDAS-AGUILAR, Catalina
November 2020

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The Special Rapporteur on the rights of persons with disabilities, Catalina Devandas-Aguilar, examines the importance of international cooperation to support the implementation of the rights of persons with disabilities and provides guidance to States on how to ensure that international cooperation is inclusive of and accessible to persons with disabilities.

 

In preparing the report, the Special Rapporteur analysed 40 responses to a questionnaire sent to Member States, national human rights institutions and civil society organizations, including organizations of persons with disabilities.  She also commissioned a study to assess the extent to which international cooperation was inclusive of and accessible to persons with disabilities, which included surveys and interviews with 26 bilateral and multilateral agencies and 10 private donors

Ensuring the right to quality inclusive education for persons with disabilities: From commitment to action

UNESCO
November 2020

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The international symposium "Ensuring the right to quality inclusive education for persons with disabilities: From commitment to action", co-organized by UNESCO, the Leonard Cheshire, and the Ministry of Education of Portugal brought together a wide range of stakeholders across the globe to discuss progress, successes achieved and challenges to ensure full participation and access to quality learning opportunities for all learners.

The symposium aims were to:

  • review persisting, as well as new challenges, due to the COVID-19 pandemic that are hindering the fulfilment of the right to inclusive education for learners with disabilities.
  • facilitate the exchange of experiences on factors influencing successful inclusive policies and practices for learners with disabilities and strengthen dialogue and cooperation amongst stakeholders at policy and practice levels.
  • explore how the inclusion of learners with disabilities in inclusive settings can be more effectively addressed by governments with regards to the commitments of Article 24 of the Convention on the Rights of Persons with Disabilities (CRPD), the CRPD General Comment 4 on article 24, and Sustainable Development 4 SDG 4, to ‘ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.

The programme included:

Opening session - Accelerating efforts towards inclusive education for learners with disabilities. (Video recording: English - French - Spanish)

Session 1 - From legislation to inclusive practices: Re-designing policy frameworks, funding and monitoring arrangements across sectors for inclusive education for learners with disabilities. (Video recording: English - French - Spanish)

Session 2 - Revisiting the teaching and learning process to ensure access and participation of learners with disabilities.

Session 3 - Moving towards inclusive and safe learning environments, including by addressing violence and bullying against learners with disabilities.
 

Closing session - Rebuilding a Stronger Global Disability Inclusive Education System post COVID-19. (Video recording: English - French - Spanish)

Gap Analysis: the inclusion of people with disability and older people in humanitarian response Part 2. Beyond the evidence: Implications for innovation and practice

PRYOR, Wesley
MARELLA, Manjula
ROBINSON, Alex
November 2020

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The first part of the Gap Analysis was published in July 2020, which presented the findings of an academic literature review and grey literature review.

Part 2 of the Gap Analysis presents the insights from individuals working in humanitarian response, disability inclusion and older age inclusion. This report begins by looking at how an agenda for the inclusion of people with disability and older people in humanitarian response has been established. The report then considers the ways in which standards and guidance inform humanitarian practice and the challenges associated with translating commitments into practice. Finally, the report identifies seven areas where there are key gaps and opportunities presenting the potential for innovation in research and practice

The case for investing in assistive technology

ATscale
November 2020

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In this new report, ATscale describes the enormous gains that access to assistive technology (AT) can have in health, for the community and the economy. The figures are dramatic: investment in the provision of four assistive products - hearing aids, prostheses, eyeglasses, and wheelchairs - will result in a return on investment of 9:1.

Having access to AT can make the difference between failure or success in school, between a job or unemployment, between a life of opportunity or a life of dependency. An example: for a child in a low- or middle-income country, access to AT can make a difference of $100,000 in lifetime income.

Altogether, providing AT to all who need it would yield more than USD 10 trillion in economic benefits over the next 55 years.

Investing in AT both has a transformative impact on people’s wellbeing and makes sound economic sense for funders and governments. 

Increasingly consulted, but not yet participating: IDA global survey report on participation of Organisations of Persons with Disabilities

INTERNATIONAL DISABILITY ALLIANCE (IDA)
November 2020

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This new report presents the findings of the first-ever global survey led by OPDs on their participation in decision making processes of governments, the UN system and funding agencies.

The IDA Global Survey is part of a strategy to hold decision-makers accountable for their commitments under Articles 4.3 and 32 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Based on testimonies collected from OPDs in 165 counties, the report assesses the quality, depth, scope and relevance of the OPDs participation in programmes and policies, and offers recommendations for governments, the UN system and funding agencies.

Excluded from the Excluded: People with Intellectual Disabilities in (and out of) Official Development Assistance

Inclusion International
2020

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This report from Inclusion International analyzes data available through the Organization for Economic Cooperation and Development (OECD) Development Assistance Committee (DAC)’s Creditor Reporting System (CRS), which reveals that mainstream development projects fail to include people with intellectual disabilities, and in many cases use project methodologies that promote segregation and other human rights violations.

 

Analysis of ODA data from 2014 to 2018 found that 99.98% of ODA funding did not include people with intellectual disabilities, that 36% of the ODA projects that did include people with intellectual disabilities were not CRPD-compliant, and that only 2% of aid relevant to people with intellectual disabilities and their families was delivered through OPDs.

 

This report urges action from donors to ensure that the commitment to disability-inclusive development under Article 32 of the CRPD is also fulfilled for people with intellectual disabilities, and sets out recommendations for funders to ensure CRPD-compliance and inclusion in the projects they support.

Funding ≠ Inclusion: Segregation and CRPD Non-Compliance in Official Development Assistance

Inclusion International
November 2020

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This two-page summary resource compiles key data on the CRPD-compliance of Official Development Assistance (ODA)-funded programmes. This analysis was originally published in Inclusion International's 2020 report, Excluded from the Excluded, which revealed that 36% of projects that included people with intellectual disabilities in 2018 used methodologies that promoted segregation.

 

This summary resource profiles key data on the CRPD compliance of ODA-funded programme methodologies by thematic area - including livelihoods, education, emergency response, and service provision programmes. The summary resource also shares key recommendations for organizations implementing programmes to ensure CRPD-compliance.

No one left behind? Exclusion of People with Intellectual Disabilities in Official Development Assistance

Inclusion International
November 2020

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This one-page factsheet presents key data from Inclusion International's 2020 report "Excluded from the Excluded," which revealed that people with intellectual disabilities are excluded from 99.98% of Official Development Assistance (ODA)-funded programmes. The factsheet also shares key recommendations for funders to ensure that no one is left behind by ODA funding.

Life Accomplishment, Social Functioning and Participation of South-Eastern Nigerians with Lower Limb Amputation

Akosile, Olusanjo Christopher
Okonkwo, Arinze Christian
Maruf, Adesina Fatai
Okoye, Chiebuka Emmanuel
2020

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Purpose: For a better understanding of the possible impact of impairments and disabilities on the life of individuals with lower limb amputation,it is important to explore the levels of Life Accomplishment (LA), Social Functioning and Participation (SFP) among them.The present study, set in South-Eastern Nigeria, aimed to study these levels and the influence of selected clinical and demographic variables on these constructs.

 

Method: This cross-sectional survey involved 60 individuals with lower limb amputation (46 unilateral, 14 bilateral) recruited from all the five South-Eastern Nigerian States. The Social Functioning Questionnaire (SFQ), Participation Scale and Life Habit Questionnaire were used for measuring levels of social functioning, social participation and life accomplishment, respectively. Data was analysed using descriptive statistics of frequency count, percentages, mean and standard deviation. Mann-Whitney U and Kruskal-Wallis tests were used to test the hypotheses. Alpha level was set at 0.05.

 

Results: Most of the participants (51.7%-58.3%) had low levels of social functioning across SFQ domains. Most of them (61.7%) had severe participation restrictions, and they all had reduced life accomplishments. Participants with bilateral amputation had poorer levels of social functioning (P<0.0001), participation restriction (P<0.0001), and life habits accomplishment (P<0.0001) than their counterparts with unilateral amputation. Individuals with below-knee amputation had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with above-knee amputation. Participants with prosthetic mobility aids had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with no prosthetic mobility aids. There was no significant difference in the levels of social functioning and participation between male and female participants, but female participants had statistically significant (P<0.0001) higher scores in nine out of twelve life habit domains than their male counterparts.

 

Conclusion and Implications: Low social functioning, severe participation restrictions, and reduced life accomplishments were prevalent among individuals with lower limb amputation, particularly amongthose with bilateral and above- knee amputations. There is a need to routinely evaluate the studied constructs among individuals with lower limb amputation. The provision of prosthetic aids may help to improve their levels of life accomplishment, social functioning and participation.

Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors

Pachiappan, Elumalai
2020

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Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.

 

Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.

 

Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.

 

Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.

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