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A Cross-sectional Survey of Rehabilitation Service Provision for Children with Brain Injury in Selangor, Malaysia

TAY, Ee Lin
WONG, Chee Piau
2018

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Purpose: Rehabilitation services in Malaysia are provided by both governmental and non-governmental agencies but there are challenges, such as the lack of integration between agencies, and accessibility barriers to services especially for the population of urban poor and people in the rural areas. With the help of a survey, this project aimed to gain a better understanding of rehabilitation services provided for children with brain injury within the state of Selangor and Federal Territories of Kuala Lumpur and Putrajaya.

 

Method: A list of 205 organisations that provide rehabilitation services for children with neurological injuries was compiled. The researchers attempted to verify the services by visiting the facilities or via telephone or email communication if visits were not possible.

 

Results: The researchers were able to verify 83% of the organisations identified. There are 40 hospitals and 17 service providers for acute and / or chronic physical rehabilitation services for persons with disabilities of all ages, including children.

 

Conclusion: Findings showed the unequal distribution of rehabilitation service provision by districts. Service providers were concentrated in the urban areas. Setting up new healthcare facilities is one of the solutions but the costs for development, construction, and manpower could be high. An alternative solution is proposed, namely, the use of a home-based virtual rehabilitation programme.

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness

JENSEN, Rune
et al
September 2018

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Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes. This initial global report on the situation of persons with deafblindness seeks to start a dialogue between international disability rights and development stakeholders, and is based on research undertaken by the World Federation of the Deafblind (WFDB) combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 22 population-based surveys from low, middle and high-income countries), an academic literature review, two surveys conducted among members and partners of WFDB and Sense International. Women and men with deafblindness from across the world took part in the Helen Keller World Conference in June 2018, and were consulted to confirm the findings and elaborate on the recommendations for this report.

 

Data and discussion are presented on people with deafblindess and: inequality; poverty; work; education; health; participation on political and public life; and social life. Datasets are included. 

 

Access to assistive products in Kurigram and Narsingdi, Bangladesh. Policy brief 2.

HUMANITY & INCLUSION BANGLADESH
et al
August 2018

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This ‘policy brief’ outlines findings on Assistive technology and Products (AP) needs, unmet needs and access patterns arising the Rapid Assessment of Disability (RAD) study conducted in 2016 and 2017, in partnership between the Bangladesh Bureau of Statistics (BBS) and Humanity & Inclusion (HI) Bangladesh, with technical oversight from the Nossal Institute for Global Health, University of Melbourne, Australia. The study was part of the HI project: Towards Global Health: Strengthening the Rehabilitation Sector through Civil Society funded by the European Union. Findings from the 4254 adults surveyed in the two districts are reported here.

 

The purpose of this component of the RAD study was to learn about the usage of AP, characteristics of AP users, barriers to use of AP, unmet and met needs of AP, and to highlight major policy implications for AP service provision, in two target areas of Kurigram and Narsingdi. The survey includes an adapted version of Washington Group (WG) ‘short set’ of Disability Questions. A modified version of the WHO’s draft Assistive Technology Assessment Tool (needs module) – or the ‘ATA-needs’, was also implemented. Findings from this study also helped modify and improve the draft ATA-needs tool

Promote, Protect and Monitor 2017 Update survey on Article 33 (2) of the Convention on the Rights of Persons with Disabilities

AICHELE, Valentin
August 2018

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Article 33 (2) of the CRPD requires state parties to have a structural framework in place to promote, protect and monitor the implementation of the Convention on the Rights of Person with Disabilities (CRPD) at the national level. This “2017 Update Survey”, conducted by the German Institute for Human Rights, was done to identify the current situation how state parties implement these provisions. National Human Rights Institutions (NHRIs) from all continents participated in the survey. A comparison of the results of the 2017 Update Survey with those of similar survey conducted in 2011 indicates that there is a positive trend towards the strengthening of the role of National Human Rights Institution in the context of the CRPD in terms of numbers – either as the bearers of sole responsibility or responsibility shared with others. 

Annexes are provided containing concluding observations, the questionnaire used and a table of survey responses.

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Jordan report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerning with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 6,381 persons of randomly sampled 1,159 households in Azraq and Zaatari camps and Irbid between October 2017 and January 2018. Twenty-five Key Informant Interviews (KIIs) and 3 Focus Group Discussions (FGDs) were also conducted between November 2017 and January 2018 to elicit deeper insights on the educational situation of children with and without disabilities

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Lebanon report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerned with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 2,495 persons of randomly sampled 506 households in the urban setting in Bar Elias as well as Informal Tented Settlements (ITS) in Bar Elias and Arsal in December 2017. Fourteen Key Informant Interviews (KII) were also conducted in December 2017 to elicit deeper insights on the educational situation of children with and without disabilities.

Livelihood opportunities amongst adults with and without disabilities in Cameroon and India: A case control study

McTAGGART, Islay
et al
April 2018

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There is limited quantitative evidence on livelihood opportunities amongst adults with disabilities in Low and Middle Income Countries. This study adds to the limited evidence base, contributing data from one African and one Asian setting. A population-based case–control study of adults (18+) with and without disabilities was undertaken in North-West Cameroon and in Telangana State, India. It was found that adults with disabilities were five times less likely to be working compared to age-sex matched controls in both settings. Amongst adults with disabilities, current age, marital status and disability type were key predictors of working. Inclusive programmes are therefore needed to provide adequate opportunities to participate in livelihood prospects for adults with disabilities in Cameroon and India, on an equal basis as others

 

The intersection of disability and food security: Perspectives of health and humanitarian aid workers

QUARMBY, Candice A.
PILLAY, Mershen
2018

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Background: Most people with disabilities the world over can be found in the Majority (or ‘economically developing’) World. This is also where most of the world’s hungry and malnourished are found. We argue that the intersectionality between disability and nutrition may best be understood through a food security framework, and we position all people living with disability, including those experiencing feeding and swallowing disabilities, as at risk for food insecurity, especially those living in humanitarian emergency contexts.

 

Objectives: This study aimed to explore and describe the knowledge and experience of humanitarian aid workers (HAWs) and health care professionals (HCPs) in food assistance contexts with regard to the nutrition and food security of people living with disabilities.

 

Method: In this exploratory, descriptive study, 16 participants with experience in sub-Saharan Africa and Southern Asia participated in an online survey. Three survey participants with extensive experience were also interviewed. Data analysis involved descriptive statistics and thematic content analysis.

 

Results: Results revealed that participants had generally low levels of exposure to and experience with disability, including swallowing and feeding disorders.

 

Conclusions: Reduced knowledge of HAWs and HCPs regarding disability and the lack of professionals such as speech–language therapists, who manage disability-specific issues such as feeding and swallowing disorders, may affect the food security of people living with disabilities in food assistance contexts.

Education and disability: Analysis of data from 49 countries

UNESCO
March 2018

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Persons with a disability are among the population groups most likely to suffer from exclusion from education but data that permit an analysis of the links between disability and education remain scarce. This paper examines educational disparities linked to disability based on data from 49 countries and territories for five education indicators:

● Proportion of 15- to 29-year-olds who ever attended school

● Out-of-school rate (primary school age, lower secondary school age)

● Completion rate (primary education, lower secondary education)

● Mean years of schooling of the population 25 years and older

● Adult literacy rate (population 15 years and older)

 

The education indicators were calculated with data from three sources, collected between 2005 and 2015: Demographic and Health Surveys (DHS) sponsored by USAID, School-to-Work Transition Surveys (SWTS) by ILO, and population census data compiled by IPUMS-International. Comparability of the data across countries is limited because only some of the surveys and censuses used questions developed by the Washington Group on Disability Statistics to identify persons with a disability. The accuracy of the indicator estimates is also affected by sampling and non-sampling errors in the data, the small sample size of many of the surveys that were analysed, and the relatively small proportion of persons with disabilities in each country’s population. Moreover, because of the scarcity of national data, it is currently not possible to generate statistics on the status of persons with disabilities with regard to education that are regionally or globally representative.

Information Paper No.49

 

From the day they are born: a qualitative study exploring violence against children with disabilities in West Africa

NJELESANI, Bridget
et al
January 2018

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The qualitative study presented in this article describes the violence experienced by children with disabilities in Guinea, Niger, Sierra Leone, and Togo from the perspectives of children, community members, and disability stakeholders. The study contributes to the literature on violence against children with disabilities, which in West Africa is largely nonexistent. 

A qualitative study design guided data generation with a total of 419 children, community members, and disability stakeholders. Participants were selected using purposive sampling. Stakeholders shared their observations of or experiences of violence against children with disabilities in their community in interviews and focus groups


BMC Public Health 18:153 2018

https://doi.org/10.1186/s12889-018-5057-x

Disability data in humanitarian action - Factsheets

HUMANITY & INCLUSION (HI)
2018

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Four factsheets concerned with Washington Group Questions (WGQ) produced in conjunction with the Disability Data in Humanitarian Action programme.

 

Aspects addressed are: collecting data at the household level; collecting data on persons with mental health difficulties and understanding temperality and causality when using the WGQs.

 

A situational analysis of disability and aging in Myanmar

ZEITZER, Ilene
2018

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The interaction of aging and disability is explored in the context of Myanmar. Blindness and deafness data are taken from the census. Carer givers and the family are discussed. Goverment and civil society responses are also discussed.

A briefing paper is also available.

Employment profile of women with disabilities in San Remigio and Mandaue City, Cebu, Philippines

MINA, Christian
December 2017

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This study, an off-shoot of the third joint project of the Philippine Institute for Development Studies and Institute of Developing Economies, looked at the employment profile of adult women with disability in San Remigio and Mandaue City in Cebu, Philippines. Using the primary data collected through survey (involving PWD enumerators) and key informant interviews with various stakeholders, the study found that both the rate and the quality of employment of PWD women in the study sites were generally low

 

DISCUSSION PAPER SERIES NO. 2017-57 DP 2017-57

Cross-sectional Survey to Assess Prevalence of Disability and Access to Services in Albay Province, The Philippines

HODGE, Marcus
BOLINAS, Amable
JAUCIAN, Erlynn
BONEO, Rebecca
SCHAPIRA, Allan
VILLANUEVA, Mary Mediatrix V
2017

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Aim:  A cluster randomized cross-sectional survey to assess the prevalence of disability and access to support services was conducted in Albay Province, the Philippines in April 2016.

 

Method:  The population-based survey methodologies developed by the Washington Group of the United Nations Statistical Commission and UNICEF were utilized.  A sample of 70 barangays (the 3rd level administrative division in the Philippines) was selected as clusters, with probability proportional to size, and 30 households were selected randomly in each barangay to be surveyed.

 

Results:  The estimated prevalence of disability using the standard criteria of the Washington Group and UNICEF among children (2-17 years old) was 2.0% and for adults (≥18 years old) it was 6.5%.  The estimated prevalence of disability was higher in rural than in urban areas.  Deficiencies in the performance of existing services were identified; access by children with disabilities to support services was lowest in rural highland and rural plain barangays.

 

Conclusions: There was a large unmet demand for support services addressing the needs of persons with disabilities in Albay Province, especially in rural highland areas.  Persons with disabilities were disadvantaged in access to education and employment; many had not been educated in their basic rights.

 

Implications:  To identify, educate and fully support persons with disabilities, community-based rehabilitation (CBR), health and other rehabilitation services must communicate effectively with each other, their current work should be mapped and analysed, their comparative strengths identified, and their future work coordinated.  It is a priority to educate persons with disabilities and their families about their rights, and facilitate their access to support services; this requires increased investment in communication targeting persons with disabilities and the communities, especially rural.  Providers caring for persons with disabilities need to work in partnership to identify unreached persons with disabilities.  Prevalence surveys, with stronger focus on the profiles and performance of CBR and related services, would add to the evidence-base to improve the quality and coverage of services for persons with disabilities.

Online Parent Training: A Pilot Programme for Children with Autism and Neurodevelopmental Disabilities in Bangladesh

KARR, Valerie
BRUSEGAARD, Callie
KOLY, Kamrun Nahar
VAN EDEMA, Ashley
NAHEED, Aliya
2017

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Purpose: This study aimed to assess the implementation of an online parent training programme in Bangladesh, designed to enhance parental knowledge of autism and neurodevelopmental disorders and related interventions. In addition, study participants were expected to become “Master Trainers” with the intention of training other parents in their local communities.

 

Method: This survey study assessed parental knowledge and programme effectiveness, such as potential online learning barriers, cultural sensitivities, and general course content feedback after each unit.

 

Results: The programme had an 81% completion rate (with parents completing all but one unit) with an average programme knowledge score of 86%. Parents felt that the course content was moderately difficult, the length of the units was appropriate, and the units were culturally sensitive. They requested more detailed lessons, specific case studies, and adaptation of the curriculum for older children.

 

Conclusion: The pilot programme merits the next phase of development, which includes local adaptation and translation. However, the findings are limited by the small sample size.

Is Adaptive Behaviour too Normal to be Normally Distributed?

SPREAT, Scott
2017

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Purpose: This study attempts to ascertain if adaptive behaviour complies with the characteristics of a normal distribution.

 

Methods: Adaptive behaviour data collected from two large state samples of 2900 were reviewed to determine the shape of their distributions. A smaller convenience sample of 37 adults without intellectual disability was similarly reviewed.  

 

Results: Findings suggest that the shape of the distribution of adaptive behaviour increasingly deviates from normal as cognitive abilities increase.   

 

Conclusions/Implications: It does not appear that adaptive behaviour is normally distributed. This will impact the diagnosis of intellectual disability because while IQ scores two standard deviations below the mean reliably cut off about 2% of the population, a similar cut-off cannot be assumed for adaptive behaviour.

Nigerian Teachers’ Understanding of Autism Spectrum Disorder: A Comparative Study of Teachers from Urban and Rural areas of Lagos State

ODUNSI, Remi
PREECE, David
GARNER, Philip
2017

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Purpose: Autism Spectrum Disorder (ASD) is a lifelong developmental disability characterised by difficulties in social interaction and social communication, and restricted and repetitive behaviour (American Psychiatric Association, 2013). Despite its prevalence the world over, there is a paucity of research in some areas such as education, particularly in sub-Saharan Africa. This paper attempts to address the gap by exploring teachers’ understanding of ASD in Nigeria.

 

Method: Using an adapted version of the Knowledge About Childhood Autism Among Health Workers (KCAHW) questionnaire (Bakare et al, 2008), a survey was conducted among 177 mainstream primary teachers from Lagos State (112 from eleven urban schools and 65 from four rural schools).

 

Results: The total mean score on the Adapted KCAHW questionnaire among all the participating teachers was 10.81 ± 4.13 out of a possible total of 16. The mean score for urban teachers was 11.21 ± 4.31, while the mean score for rural teachers was 10.11 ± 3.75. In total, 46% of the urban teachers and 31% of the rural teachers demonstrated a generally accurate knowledge of ASD, with 15% (23 urban teachers and 4 rural teachers) of the sample answering all questions correctly.  Over 50% of urban teachers and almost 70% of rural teachers surveyed had only a low or moderate understanding of ASD.

 

Conclusions: This research supports previous studies that identified low professional knowledge and understanding of ASD, and a need for improved professional education and training. 

 

Limitations: The focus was on only one state within Nigeria, and only on mainstream primary schools. Further research is necessary across the educational age range as well as different geographical areas in the country.

Cochrane Rehabilitation Methodology Committee: an international survey of priorities for future work

LEVACK, William
et al
October 2017

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Cochrane Rehabilitation aims to improve the application of evidence-based practice in rehabilitation. It also aims to support Cochrane in the production of reliable, clinically meaningful syntheses of evidence related to the practice of rehabilitation, while accommodating the many methodological challenges facing the field. To this end, Cochrane Rehabilitation established a Methodology Committee to examine, explore and find solutions for the methodological challenges related to evidence synthesis and knowledge translation in rehabilitation. An international online survey was conducted via Cochrane Rehabilitation networks to canvass opinions regarding the future work priorities for this committee and to seek information on people’s current capabilities to assist with this work. One of the areas of debate concerned whether and how work on the application of Cochrane methods in low and middle income countries should be prioritised.

 

Eur J Phys Rehabil Med 2017;53:814-7

DOI: 10.23736/S1973-9087.17.04958-9

Wheelchair services and use outcomes: A cross-sectional survey in Kenya and the Philippines

BAZANT, Eva S.
HURWITZ, Elizabeth J. Himelfarb
ONGUTI, Brenda N.
WILLIAMS, Emma K.
NOON, Jamie H.
XAVIER, Cheryl A.
GARCIA, Ferdiliza D.S.
GICHANGI, Anthony
GABBOW, Mohammed
MUSAKHI, Peter
KIRBY, R. Lee
2017

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Background: The World Health Organisation recommends that services accompany wheelchair distribution. This study examined the relationship of wheelchair service provision in Kenya and the Philippines and wheelchair-use–related outcomes.


Method: We surveyed 852 adult basic manual wheelchair users. Participants who had received services and those who had not were sought in equal numbers from wheelchair-distribution entities. Outcomes assessed were daily wheelchair use, falls, unassisted outdoor use and performance of activities of daily living (ADL). Descriptive, bivariate and multivariable regression model results are presented.


Results: Conditions that led to the need for a basic wheelchair were mainly spinal cord injury, polio/post-polio, and congenital conditions. Most Kenyans reported high daily wheelchair use (60%) and ADL performance (80%), while these practices were less frequent in the Philippine sample (42% and 74%, respectively). Having the wheelchair fit assessed while the user propelled the wheelchair was associated with greater odds of high ADL performance in Kenya (odds ratio [OR] 2.8, 95% confidence interval [CI] 1.6, 5.1) and the Philippines (OR 2.8, 95% CI 1.8, 4.5). Wheelchair-related training was associated with high ADL performance in Kenya (OR 3.2, 95% CI 1.3, 8.4). In the Philippines, training was associated with greater odds of high versus no daily wheelchair use but also odds of serious versus no falls (OR 2.5, 95% CI 1.4, 4.5).


Conclusion: Select services that were associated with some better wheelchair use outcomes and should be emphasised in service delivery. Service providers should be aware that increased mobility may lead to serious falls.
 

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