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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.

Employers' Attitudes and Hiring Intentions towards Persons with Disabilities in Hotels

PIRAMANAYAGAM, S
SEAL, P P
2021

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Purpose: The hospitality industry is labour intensive. Currently, in India, hotels have a high employee attrition rate. This study aimed to explore the attitudes of hotel managers towards recruiting persons with disabilities as employees, a move which could benefit all concerned.

 

Method: A structured survey instrument was sent to 31 employers in star category hotels.

 

Results: Employers’ attitudes have a significant influence on the recruitment of persons with disabilities. While the intention to hire persons with disabilities is positively associated with quality of work, loyalty, and dependability, it can also be negatively associated with lack of skill, work experience, poor time management and absenteeism.

 

Conclusion: It is concluded that employers hire person with disabilities to work in hotels as they are more reliable and loyal towards the organisation. This attitude from the side of employees with disabilities will also help to overcome the problem of high employee attrition that has a deleterious effect on profitability in the service industry.

 

Limitation: The data is collected from hotels in a single city, which may limit the generalisation of the findings.

Training of Mid-Level Rehabilitation Workers for Community-Based Rehabilitation Programmes

GHOSH, R
PALANIVELU, V
TEBBUTT, E
DEEPAK, S
2021

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Purpose: There is a lack of trained rehabilitation professionals, especially in the small towns and rural areas of low and middle income countries. In India, a cadre of mid-level rehabilitation workers, the Rehabilitation Therapy Assistants (RTAs), are being trained by Mobility India, a Non-Governmental Organisation (NGO). This paper aims to assess impact of their training and experiences after the training.

 

Method: Data were collected from 3 different initiatives connected with the trained RTAs: an impact assessment of their training; interviews with RTAs during an evaluation; and a survey of 188 RTAs trained between 2002 and 2019.

 

Results: RTAs were shown to have good skills to provide rehabilitation interventions in the field and are appreciated by clients and other stakeholders. Most of the RTAs work for NGOs in CBR programmes, and in private hospitals and clinics. There does not seem to be a role for them in government services in most countries. The number of trained RTAs remains small in spite of the large needs. This may be due to lack of an accreditation system for RTAs and the low priority given to rehabilitation services in general in some countries.

 

Conclusions: The results provide useful information to strengthen RTA training courses. Training RTAs to provide rehabilitation services in smaller towns and rural areas of low and middle income countries can have a good impact through CBR programmes. However, this impact remains circumscribed to small areas where NGOs are active. Changes are needed in health systems for the inclusion of mid-level rehabilitation workers in primary health care services.

Impact of Covid-19 on people with disabilities in Albania

LAHE, Alma
SHEHU, Arlinda
January 2021

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This report aims to assess the level of access that People with Disabilities have to services and institutions during the pandemic period, as well as to analyze their economic and financial needs to cope with the consequences of the crisis caused by COVID-19.

The survey was conducted in the form of a quantitative field survey. 360 individuals participated in the survey: 199, or 55.3%, of the participants were people with disabilities (PWDs) while the remaining 161 persons, or 44.7%, were guardians or parents of a person with disabilities. The survey was conducted in all 6 districts of the country. The questionnaire was designed to gather information on the perceptions, attitudes, behaviors and experiences of people with disabilities during the COVID-19 period.

Disability, Sociodemographics, and Discrimination: A Descriptive Analysis of Household Survey Data from Bangladesh

Ekman, Björn
Borg, Johan
Khan, AHM Noman
Bari, Nazmul
Tanbir, Moin
Emmelin, Maria
2020

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Purpose: Disability affects upwards of one billion people worldwide, the majority of whom live in low- and middle-income countries. Based on survey data from Bangladesh, the aim of the study is to contribute to an improved understanding of the experiences of people with disabilities in terms of discrimination, health, and sociodemographic indicators.

 

Method: A descriptive analysis of data is presented, from a survey implemented in 2016 on a sample of adult persons with disabilities from 18 districts in Bangladesh (n=1,900). The summary statistics of main indicators and correlation analysis of key variables are given.

 

Results: Women comprised around 40% of the sample. The mean age was 36 years (minimum 18 years and maximum 55 years). Women had lower socioeconomic status than men (p<0, 01), were less likely to be well-educated or employed, had worse self-assessed health (p<0, 05), and were less likely to be able to read and write. Men were more likely to have a physical disability than women (p<0, 01). Both women and men reported unmet needs in terms of access to assistive products and not receiving a benefit. Around 40 % of the sample reported having experienced discrimination, with no significant differences between women and men.

 

Conclusion and Implications: Many women and men with disability experience some forms of discrimination, including in matters pertaining to healthcare, education, and employment. Such experiences may have a negative impact on their life chances. However, women and men with a disability differ in several important respects, both in terms of socioeconomic status and types of disability. Such differences need to be considered for effective and equitable policy development.

User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan

Aftab, Zohaib
Zaidi, Zohaib Ahmed
Shafi, Faraz
2020

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Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.

 

Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.

 

Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.

 

Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.

Quality of wheelchair services as perceived by users in rural Bangalore district, India: a cross-sectional survey

GEILEN, Bart G
DE WITTE, Luc
NORMAN, Gift
GEORGE, Carolin Elizabeth
2020

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Background and aim:

This study investigated the current state of wheelchair services in Bangalore Rural district, as provided by Bangalore Baptist Hospital, and identified areas for improvement.

 

Method:

a cross-sectional survey was held among 50 wheelchair users. Data was collected on demographics, satisfaction, wheelchair skills and level of disability using QUEST, WST-Q and CHART-SF questionnaires.

 

Result:

Overall satisfaction can be described as more or less satisfied, scoring 3.8 out of 5. Wheelchair users were less satisfied with the services compared to the wheelchair itself. The skills a wheelchair users had were strongly correlated with satisfaction scores (p < 0.01). Differences in satisfaction between genders were observed and related to multiple factors.

 

Conclusion:

Wheelchairs should be easy to use with support services being easily accessible. A wheelchair should be delivered together with a training program to provide the user with the skills to operate and maintain the wheelchair. There are gender-wise differences in satisfaction towards wheelchair services that influence satisfaction.

Estimating assistive product need in Cameroon and India: results of population‐based surveys and comparison of self‐report and clinical impairment assessment approaches

BOGGS, Dorothy
KUPER, Hannah
MACTAGGART, Islay
MURTHY, GVS
OYE, Joseph
POLACK, Sarah
November 2020

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To estimate population need and coverage for distance glasses, hearing aids and wheelchairs in India and Cameroon, and to explore the relationship between assistive product (AP) need measured through self‐report and clinical impairment assessment.

Population‐based surveys of approximately 4000 people each were conducted in Mahabubnagar district, India and Fundong district, Cameroon. Participants underwent standardised vision, hearing and musculoskeletal impairment assessment to assess need for distance glasses, hearing aids, wheelchairs. Participants with moderate or worse impairment and/or self‐reported difficulties in functioning were also asked about their self‐reported AP need.

 

https://doi.org/10.1111/tmi.13523

Promoting Inclusive Education in Mongolia

SHELZIG, Karin
NEWMAN, Kirsty
November 2020

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This paper explores inclusive education for children with disabilities in Mongolia in line with the global commitment captured in SDG 4, based on data from a 2019 survey of more than 5,000 households in Ulaanbaatar, and 4 provinces.

 

ADB EAST ASIA WORKING PAPER SERIES No.28

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.

Disability Data advocacy toolkit

LOCKWOOD, Elizabeth
et al
October 2020

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This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidenced based advocacy to influence policy and decision makers. The toolkit discusses the use of the WG questions as best practices to be employed in data collections and disaggregating data by disability.

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

When does disability begin? Identifying the age of onset

MONT, Daniel
October 2020

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Issues are discussed about adding to the Washington Group questions to collect information on the age of disability onset. Issues include:

  1. People may not remember the exact age
  2. The exact age may be difficult to determine
  3. People may have onsets of difficulties in different domains at different times

 

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

How can innovative partnerships make data stronger and more inclusive?

WELLS, Claudia
SABITI, Bernard
CARANZA TRESOLDI, Javier
October 2020

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Development Initiatives (DI) Director of Data Use Claudia Wells, Senior Strategic Partnerships & Engagement Manager Bernard Sabiti and Founder and Director of the GeoCensos Foundation Javier Carranza Tresoldi explore the power of partnerships to improve data. Looking at the benefits, challenges and nuances of collaboration between all kinds of actors, they share case studies of what works and practical advice to build strong partnerships. 

The hidden impact of COVID-19 on children and families with disabilities.

ORSANDER, Martina
MENDOZA, Pamela
BURGESS, Melissa
ARLINI, Silvia Mila
October 2020

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This report is one in a series presenting findings from the Global COVID-19 Research Study on The hidden impact of COVID-19 on children. The results presented here focus on the impacts of COVID-19 on children and parents/caregivers with disabilities and their families, drawing on data from our representative sample of 17,565 parents/ caregivers and 8,069 children in our programme participants group. Topics covered include impacts of COVID-19 on household economy, health and nutrition, child education and learning, child rights, relationships between children and their parents/caregivers, psychosocial wellbeing, family separation and household violence.

The research was implemented in 46 countries in June and July 2020 and resulted in the largest and most comprehensive survey of children and families during the COVID-19 crisis to date, with 31,683 parents/ caregivers and 13,477 children aged 11–17 participating in the research. The research sampled three distinct population groups:

1. Save the Children programme participants;

2. Specific population groups of interest to Save the Children;

3. The general public.

A representative sample of Save the Children programme participants with telephone numbers or email addresses was obtained in 37 countries.

 

A GLOBAL RESEARCH SERIES

Management of Undergraduate Community-Based Rehabilitation Programmes in the Philippines: A Cross-Sectional Survey

TRINIDAD, Pocholo B
SHIBU, Litty M
CABALLERO, Napoleon R
RAJAB, Ebrahim
2020

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Purpose: The survey aimed to identify common strengths and weaknesses regarding the characteristics, management and implementation of Community-Based Rehabilitation (CBR) training in the undergraduate curriculum of Schools of Physical Therapy in the Philippines, and make recommendations for improvement.

 

Method: A survey was conducted with the academic heads of CBR departments in 10 Physical Therapy schools. The institutions were selected through cluster sampling according to regional location. Nine of these were private institutions. Data was collected through a 24-item self-assessment survey distributed to the heads of the participating colleges /departments.

 

Results: A number of strengths and weaknesses were identified. The strengths were:  all schools had a 1 to 2-month clinical CBR course integrated into their undergraduate curriculum; CBR courses were supported by a course syllabus, learning outcomes, student assessment and clinical training manual; 80% of institutions had implementing policies and guidelines governing management of the CBR programme(s); at least one physiotherapist was involved in the management of the CBR programme(s); and, CBR activities were delivered in coordination with key stakeholders management, with emphasis on delivery of physical therapy services, disability prevention, health education, participation of persons with disabilities and community awareness. The weaknesses were: no head/programme coordinator for 30% of CBR programmes; 40% did not have clinical coordinators as designated management positions in the CBR programme; only 50% of academic staff received formal CBR training, of which 80% was provided through CBR summits and professional interaction with other physical therapists; and, only 50% of schools adopted a multidisciplinary approach to service delivery which was focused on the Health domain of the CBR Matrix.

 

Conclusion:  The CBR component of the undergraduate physical therapy curriculum in the Philippines can be improved. A shift in the teaching to transdisciplinary care and inter-professional learning is recommended. Regular review of the CBR indicators should be done by the schools, including the key stakeholders.  Challenges for CBR implementation were recruitment of community volunteers as CBR workers, availability of indigenous resources and finances to support CBR activities, and family participation in the rehabilitation of a relative with a disability. Each school should determine whether current human resources and training are adequate. Schools must be encouraged to jointly identify common problems in CBR education and share solutions. 

Breaking down the barriers for people with disabilities through innovation in Africa

GSMA
September 2020

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During this interactive session, hosted by GSMA’s Assistive Tech team, we shared insights on the mobile disability gap, including findings from our gender and disability research, and lessons learnt from the innovation landscape. We also heard from several leading assistive tech innovators supporting the digital inclusion of people with disabilities, both visible or unseen across emerging markets

Pivoting to inclusion : Leveraging lessons from the COVID-19 crisis for learners with disabilities

McCLAIN-NHALPO,Charlotte Vuyiswa
KULBIR SINGH,Ruchi
MARTIN,Anna Hill
et al
August 2020

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As governments respond to the Coronavirus 2019 (COVID-19) pandemic, the global community must ensure that persons with disabilities are included. This will require disability inclusion to be considered in all interconnected sectors; education, health, social protection, and inclusion from the planning stage all the way through to delivery and recovery efforts that are inclusive of all and are sufficiently differentiated to meet the specific needs of children with disabilities. The issues paper focuses on the following objectives: (1) addressing education, social needs, barriers, and issues for learners with disabilities at a global, regional, and country-level during the COVID-19 crisis; and (2) recommending practices for education and social inclusion, and reasonable accommodations utilizing the twin track approach and principles of universal design for learning.

How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

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