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Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

Mixed-Methods Programme Evaluation of Disability Equality Training (DET) in Mongolia

Higashida, Masateru
Gereltuya, Ganbayar
Altanzul, Gantaikhuu
2020

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Purpose: An evaluation of a disability equality training (DET) programme, based on the social model of disability, was conducted to explore the changes in the participants’ attitudes and behaviours in Ulaanbaatar, Mongolia.

 

Methods: This study is composed of two parts. First, the participants’ attitude changes during DET sessions were examined through a descriptive quantitative and qualitative analysis of questionnaires and related documents. Second, thebehavioural changes at the organisational and individual levels, the impact on society, and related factors were explored by quantitative and qualitative analysis of good practice cases: 39 participants were selected through purposive sampling and semi-structured interviews were conducted.

 

Results: It was found that most participants adopted the social model perspective within these sessions. A qualitative content analysis of the good practice cases also found that the majority of participants attempted to change their social environments after the sessions. Thematic analysis identified promotional factors, such as within-organisation dynamics and compatibility and barriers at the individual and organisational levels, which were associated with participants’ behaviours after DET sessions.

 

Conclusion: The implications of these findings are discussed in connection with the strategic implementation of DET to promote disability-inclusive development. Future studies should examine the effectiveness of a strategy by considering the factors identified in this study and by using a reliable sample in various settings where DET sessions are conducted.

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.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Inclusive practices in disaster risk management. Experiences of social actors and government entities in Latin America

HUMANITY & INCLUSION (HI)
December 2020

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Twelve inclusive practices are presented that explore the application of the inclusive approach to disaster risk management. Collecting and sharing inclusive practices is one axis of the project, “Inclusive Disaster Risk Management: An innovative approach towards inclusion of most vulnerable groups”, which aims to disseminate inclusive disaster risk management in Latin American countries in order to increase protection and resilience in high-risk groups. The project accompanies and strengthens regional, national, and local actors from the following countries: Bolivia, Chile, Colombia, Ecuador, Nicaragua, Paraguay, and Peru.

 

This regional initiative for inclusive disaster risk management is led by Humanity & Inclusion (HI), in partnership with Save the Children International Peru (SCI) and Cooperazione Internazionale Paraguay (COOPI). 

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

Covid-19 Income loss, risk of violence and the response of persons with disabilities and their representative organisations in Uganda

ADD International
November 2020

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Findings from this report show evidence that some persons with disabilities face multiple types of jeopardy during Covid-19: they are at an increased risk of violence and are suffering a dramatic loss in household earnings. They are also taking action: many plan to adapt their livelihood and are mobilising resources for their communities. Persons with disabilities ask government and NGOs to do more and to be more inclusive in their response to the crisis.

● Three of four respondents report increased risk of violence since the pandemic began. 77% of women and 80% of men report an increase in economic, physical, psychological and/or sexual violence after Covid-19.

● One in three women respondents report experiencing an increased risk of physical and/or sexual violence.

● Livelihood support could reduce violence risk. Three in four (76%) of respondents say livelihood support, such as start up capital for small business, would be very or extremely useful to them in order to reduce their risk of experiencing violence during Covid-19.

● Respondents report losing 64% of their monthly household income since the outbreak. After adjusting for purchase power parity, this is the equivalent of falling from 181 GBP to 65 GBP per month.

● Covid-19 support is unequal and insufficient for many. Where support has been distributed, one in two report that they do not receive the same protection support (ie PPE) as others; one in four report that they do not receive the same Covid-19 survival support (ie food); one in three report they do not receive the same Covid-19 information; and one in three say that support does not meet need.

● Most respondents will try something new. 59% indicate that they will start something new to make ends meet if the situation continues.

● OPDs are obtaining food support through lobbying, providing vital psychosocial support and information.

● Some OPDs are not able to respond because they are capacity-constrained.

● Government and NGOs can do more.


From these interviews and findings, some recommendations emerge for government and NGOs:

● Support livelihood to reduce violence risk and increase survival strategies.

● Increase access to capital.

● Meaningfully engage persons with disabilities and their respective organisations in response planning and implementation.

● Ensure distribution of support reaches persons with disabilities, more specifically the underrepresented groups.

● Change attitudes toward and increase knowledge about persons with disabilities.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Leaving no one behind in education - A focus on children with disabilities

ADEREMI-IGE, Toyin
KAPUSCINKI DEVELOPMENT LECTURES
November 2020

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This lecture by Dr. Toyin Aderemi-Ige shed light on the educational situation of children with disabilities in low and middle income countries, highlighting how the interaction of multiple discriminatory factors (like gender and disability) results in increased exclusion. The 2030 Agenda sets the commitment to “leave no one behind” and its Sustainable Development Goal 4 calls to ensure inclusive and quality education for all. However, 10 years away from the 2030 deadline, children with disabilities are still significantly excluded from education and, consequently, from life’s opportunities.

 

The event was moderated by Dr. Harlan Koff of the Luxembourg University.

The lecture was followed by a panel discussion with:

  • Catherine Léglu, Vice-rector for Academic Affairs, University of Luxembourg
  • Julia McGeown, Global Education Specialist, Handicap International
  • Graham Lang, Chief of Education at Education Cannot Wait

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)

Teaching for inclusion – a review of research on the cooperation between regular teachers and special educators in the work with students in need of special support

PAULSRUD, David
NILHOLM, Claes
2020

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This article presents a review of qualitative research on interprofessional cooperation between regular teachers and special educators published from 2005 to 2019. The aim of the review was to gain knowledge about how different forms of cooperation take shape and about factors at multiple levels that facilitate or constrain cooperation as a means of achieving inclusion. In total, 25 studies were selected. The results are discussed in relation to Thomas Skrtic’s theory of bureaucracies within the school organisation in order to compare and analyse different forms of interprofessional cooperation and schools’ organisations of special educational work. Cooperative teaching, special educational consultations and mixed forms of cooperation were found to entail different benefits and challenges related to communication and the cooperating actors’ roles. Facilitating factors included personal chemistry, an equal distribution of power and responsibilities and support from the school management through provision of professional development and adequate planning time. In several studies, a flexible cooperation was argued to be hindered by curricular constraints and standardised testing. Education policy is therefore emphasised in this review as important for understanding the conditions under which school staff are responsible for inclusion.

Do both ‘get it right’? Inclusion of newly arrived migrant students in Swedish primary schools

TAJIC, Denis
BUNAR, Nihad
2020

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The aim of this article is to advance knowledge on how Swedish primary schools organise education and what strategies they deploy to ensure inclusion and attainment of newly arrived migrant students. The article is based on semi-structured interviews with 30 teachers and school administrators, and one-year of fieldwork undertaken in two multicultural urban primary schools in the Stockholm region. One of the schools initially places students in separate classes, while the other one places them directly into mainstream classes. Both are evoking inclusion and attainment as a reason for using their respective models. As such, do both ‘get it right’? Using inclusion as the theoretical and conceptual framework this article addresses the broader question: How is the meaning of inclusion constructed in the processes of its practical implementation in these two schools? The results show the ambitious tale of inclusion in both schools was, in the process of the construction of its meaning and implementation, reduced to some of its aspects. Teachers and school administrators are allowed to include or leave out of their model whatever they deem necessary, obsolete, expensive or unrealistic and still fitting under the umbrella of inclusion. Sometimes it works, sometimes it does not, and both schools ‘get it right’ and ‘wrong’ in some aspects.

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. 

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