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Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

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Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

Making themselves heard: deaf people in India during the global COVID-19 pandemic

GULYANI, Ritika
2021

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The onset of the sudden and global pandemic, COVID-19, has forced all of us to change our ways of living and interacting with the outside world. Additionally, a lot of restrictions on movement mandated by governments have also been issued in the past few months. In the context of India, a nationwide lockdown was in place from midmarch till the end of May. These lock-downs have had serious consequences for various segments of the population across the country, especially, those on the margins, who are vulnerable and/or in a minority. One such segment has been the disabled population. This paper, with the help of narratives, addresses the challenges faced by the deaf population during the COVID crisis and the ways in which they have negotiated these. There has been a big void in the dissemination of information to the deaf, owing to the fact that the majority of information from official sources has not been translated into sign language. More so, in times when information is the key to maintaining proper health care, this is a big lacuna. Additionally, the paper will also talk about the role of technology as well as of deaf groups in the lives of deaf people, and how it has proved to be very helpful to not just spread proper awareness about the pandemic, but also in trying to build up a movement in trying to recognise Indian Sign Language as the 23rd Official Language of India. 

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

Mental health of LGBTIQ+ people in India during the COVID 19 pandemic: risks, access, lessons

TENNETI, Suchaita
2021

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The COVID-19 pandemic and the associated containment measures have resulted in a mental health crisis globally. Marginalised populations have been disproportionately affected during the pandemic with an aggravation of existing inequalities, and this has increased the risks to their mental health. The LGBTIQ+ population is among those marginalised whose lives have been rendered even more precarious than before by the pandemic. This paper explores some of the main risks to the mental health of LGBTIQ+ people in India, the advice being given to them by mental health professionals and activists, and need for queer revisionings of uncertainty, the concept of a future and individualism.

Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Emergent Disability voices on Social Media during COVID -19 times

MEHROTRA, Nilika
2021

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Persons with disabilities are invisible and almost silent in the Indian media. This paper examines the emergence of articulate expressions of persons with disabilities (pwd) in the social media over the months March to June 2020 during COVID Lockdown. While technology has been seen as a great leveller for persons with disabilities, the digital divide, however, remains very real for masses of disabled persons, whereby it is largely the educated middle class who have access to internet facilities and presence on social media. This paper draws from observation and analysis of posts on Facebook by different categories of persons with disabilities. There appear to be a number of discourses emerging and imageries running almost parallel. Accessibility and support appear to be very important issues especially in terms of access to domestic workers, regular medical checkups, and procuring daily provisions as well as access to online teaching. On the other hand, little concern is being paid to the huge humanitarian crisis of returnee workers from cities to villages. Interestingly, disabled persons appeared more connected, participating in discussions and Webinars and voicing out their experiences with greater clarity and also analysing the COVID situation through Disability Studies (DS) perspectives.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Barriers to Utilisation of Dental Services among Children with Disabilities in a Coordinated Healthcare Programme in Mangalore, South India: A Mixed Methods Study

SURESH, L R
RAI, K
HEGDE, A M
DSOUZA, C V
2021

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Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.

 

Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.

 

Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.

 

Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.

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.

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Academic Outcomes and Coping Mechanisms of Children using Cochlear Implants in Mainstream Schools in Kerala, India

GEORGE, A
JOY, J M
SREEKUMAR, S
2021

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Purpose: The aim of the present study was to understand the academic outcomes of children using cochlear implants in mainstream schools in Kerala, India and to explore the compensatory strategies used by them to overcome the difficultiesfaced in classrooms.

 

Method: Thirty-one children using cochlear implants who were attending first and second grades in mainstream schools, and their parents and teachers participated in the study. Teachers were asked to rate a questionnaire, “Teachers’ Perceptions of Academic Outcomes”, which consisted of five sections – oral comprehension, oral expression, reading, writing and mathematics. The performance of the children using cochlear implants was compared with the performance of typically hearing children in the class. The grades obtained in the previous examination were also used for the comparison. Information was collected regarding difficulties faced by the children inside the classroom and their strategies to overcome the challenges.

 

Results: The class teachers rated the performance of 71 % of these children as ‘above average’. Though the academic outcomes were found to be good on the questionnaire and classroom tests, most of the children with cochlear implantsfaced various difficulties and had used different compensatory strategies to give their optimum performance in the classroom.

 

Conclusion: The study emphasizes the importance of having mid- and long-term follow-ups with children using cochlear implants, even after mainstreaming. It is necessary to orient and train teachers about the needs of these children and to implement support strategies in mainstream schools.

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.

Traffic crash injuries and disabilities : The burden on Indian society

WORLD BANK
February 2021

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Road crashes endanger the lives and livelihoods of millions of road users globally and in India.  The risk of a road crash in low-income countries is three times higher than compared to that in high-income countries. Not only does it lead to untold and unaccounted for suffering and loss for victims and their families, but also, it drains the GDP of countries by claiming millions of economically productive young lives6. While it is recognized that RTIs affect the developed and developing world in different ways, it also impacts poor households and disadvantaged sections of the population within developing countries differently. World Bank commissioned a survey-based assessment study in association with the Save LIFE Foundation (SLF) to determine such differential impacts more objectively in India. This study aims to capture the socioeconomic realities and nuances of road crashes at the sub-national level in India. It seeks to document inter-linkages between poverty, inequalities, road users, and road crash outcomes by analyzing data from four States in India, i.e., Uttar Pradesh, Bihar ,Tamil Nadu and Maharashtra. The four states have been selected on the basis of several criteria including demographic and geographical representation, magnitude of fatality burden and socio-economic parameters such as economic growth, poverty rate and social welfare. 

The mobile disability gap report 2020

ARANDA-JAN, Clara
December 2020

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As we move towards a more digital society, it is critical that digital technologies are inclusive of everyone, including persons with disabilities. However, research conducted by the GSMA Assistive Tech programme suggests that a disability gap exists in mobile access and use.

Driving greater inclusion of persons with disabilities requires data and evidence to inform actions from multiple stakeholders. This report looks to understand the digital divide experienced by persons with disabilities, identify existing barriers to digital inclusion and define strategies and actions to close the mobile disability.

This report uses data from the GSMA Intelligence Consumer Survey 2019 to explore the digital inclusion of persons with disabilities in eight LMICs: Bangladesh, Brazil, India, Kenya, Mexico, Nigeria, Pakistan and Uganda. This report looks at key stages and milestones in the journey to mobile internet use that can pose barriers to regular and diverse mobile use

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

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.

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

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