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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.

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.

Health-Related Quality of Life of Wheelchair Fencers, Sedentary People with Disability and Conventional Fencers in Brazil, Assessed by Short Form 36 (SF-36)

CLEMENTE, Mirna
MIGUEL, Marilis Dallarmi
FELIPE, Karina Bettega
SCHWANTES, Ivan Marangon
JUNIOR, Darlan França Ciesielski
SCHWANTES, Athos Marangon
SCHONHOFEN, Christian Burmeister
ALVES, Tabea Epp Kuster
BRAZ, Tiago Volpi
FERNANDES, Luiz Claudio
MIGUEL, Obdulio Gomes
2019

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Purpose: It is well established that physical exercise, in general, decreases anxiety and depression. Para sport or sport for people with disabilities is used as a rehabilitation strategy to improve their quality of life. This study aimed to investigate people with disabilities who practise wheelchair fencing, sedentary people with physical disability and conventional fencers, assessed by Short Form 36 (SF-36), by comparing the groups.

 

Method: Forty-two people from Physical Disability Association of Parana (ADFP) answered SF-36 and were divided into three groups: Conventional Fencers (CF), Wheelchair Fencers (WF), and Sedentary People with Physical Disability (SD).

 

Results: This study was the first to report the Health-Related Quality of Life (HRQOL) of conventional fencers, wheelchair fencers, and sedentary people with physical disability, using SF-36. The data demonstrated high scores in CF and WF, on seven SF-36 scales of the eight-scale profile, including functional and mental health, role physical, bodily pain, general health perception, vitality, social functioning, mental health. Moreover, the sedentary group had lower scores in most of the domains when they were compared to CF.

 

Conclusion: The results might provide supportive evidence that HRQOL of WF has demonstrated a positive effect on people with disability since para sport has been used as a rehabilitation programme.

 

Implication: The implementation of a public campaign is recommended, about sport as a health promoter for disability and rehabilitation. By involving healthcare providers from the area, people with disabilities can be encouraged to participate in para sport.

‘Enabling Access’: A Pilot Study on Access and Use of Assistive Products in the Northern Province, Sri Lanka

HETTIARACHCHI, Shyamani
SUBRAMANIAM, V
RAJAH, Emil
GOWRITHARAN, Paramaguru
NIZAR, Shamra
SALEEM, Shakeela
2019

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Purpose: The need for suitable assistive technology is growing all over the world, not only for people with disabilities but also for the ageing population with functional decline and non-communicable diseases. Access to assistive technology promotes access to education, employment and active societal participation. The aim of this study was to assess the self-reported need by persons with disabilities and by people who were 65 years and older without disabilities in the Northern Province of Sri Lanka, for assistive products; and to identify barriers to accessing these assistive products.

 

Method: This mixed-methods pilot study included 76 participants who were either persons with disabilities or their caregiver or persons 65 years and older, from the Northern Province of Sri Lanka, affected by the now-ended 30-year civil war.  To ascertain trends in the local need for assistive products, a translated version of the World Health Organisation’s Priority Assistive Products List of 50 items was used. In addition, semi-structured interviews with key participants were conducted, to gain some insights into the barriers to accessing assistive products. 

 

Results: The most widely used assistive products among persons with disabilities were connected to war-related injuries. In contrast, those used by the older age group of persons without disabilities were connected to non-communicable diseases and age-related frailty. The assistive products requested by both groups were aids to promote independence in daily activities and to support access to education and employment. The emergent themes included affordability, employment, independence in activities of daily living, stigma and psychological impact, and a lack of awareness and guidance in the use of assistive devices.

 

Conclusion: The findings highlight the need for policies and practices to be informed by local socio-cultural, historical and geographical realities.

The Arabic version of Trinity Amputation and Prosthetic Experience Scale - Revised (TAPES-R) for lower limb amputees: Reliability and validity

MASSARWEH, Reem
SOBUH, Mohammad
2019

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Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.

 

Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.

 

Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.

 

Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.

 

Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Users’ satisfaction with assistive devices in Afghanistan

MOHAPATRA, Bikram Keshari
2019

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Purpose: The objective of this study was to assess users’ satisfaction and effectiveness of assistive devices in four regions of Afghanistan, namely Mazar-e-Sharif, Ghazni, Jalalabad and Taloqan.

 

Method: A random sample of 785 users, who were provided with 874 mobility and assistive devices in four regional prosthetic and orthotic workshops of the Swedish Committee for Afghanistan (SCA), participated in the study.

 

Results: The study revealed that the majority of the participants rated the assistive devices as very useful. While 45% of respondents even described them as excellent, 49% expressed a good level of satisfaction with the services they received at treatment centres. Similarly, the majority of respondents (67%) mentioned a maximum level of improvement, while 15% claimed to have witnessed some improvement in their physical condition. Fitting, comfort, and ease of use, along with durability, weight and appearance were rated as the most important factors of assistive devices. On the other hand, slow service and limited access to maintenance and repair facilities were identified as reasons for dissatisfaction.

 

Conclusion: The study provided continuous and valuable information to rehabilitation professionals regarding device effectiveness and satisfaction. The findings also recommended a stronger focus on comfort and usefulness of mobility and assistive devices. Lastly, the study suggested that lack of local device-repair service needs to be addressed by rehabilitation professionals. 

Barriers and Facilitators for Wheelchair Users in Bangladesh: A Participatory Action Research Project

ALDERSEY, Heather
QUADIR, Mohammad Morshedul
AKTER, Soniya
MOZUMDER, Rabiul Hossain
NAZNEEN, Nayma
NURI, Reshma Parvin
2018

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Purpose: People who use wheelchairs face a range of physical, social, and economic barriers to regular participation in their communities. These barriers may be more acute in countries such as Bangladesh which are affected by poverty and often lack the physical infrastructure or resources necessary to create inclusive or accessible environments. This research aimed to identify: (a) the barriers and facilitators to accessibility faced by wheelchair users in Bangladesh; (b) how these barriers affect the inclusion of wheelchair users in Bangladeshi society; and (c) what could be done to improve accessibility and inclusion for wheelchair users in Bangladesh.

 

Methods:  This participatory action research (PAR) project used Photovoice and semi-structured interviews to identify barriers and facilitators to accessibility for people who use wheelchairs in Bangladesh.

 

Results: Participants mentioned a number of barriers in public spaces, such as roads, missing or inadequate ramps, inaccessible restrooms, and negative attitudes. There were also participants who had made their home environments more accessible with accommodations such as ramps, arrangement of space, and low countertops/work spaces. Women wheelchair users seemed to face greater barriers to access, as compared to men, in a range of community spaces and activities. Participants’ recommendations for improvement targeted government stakeholders and included greater focus on road infrastructure, particularly during flooding in the rainy season, and modifications to the public transportation system.

 

Conclusion: A key goal of the study was to identify barriers and facilitators, and use the information gathered to promote social change on the ground. Future research and action should encourage more people to get involved in removing barriers for people with disabilities, in Bangladesh as well as globally

Users’ satisfaction with prosthetic and orthotic assistive devices in the Lao People’s Democratic Republic: A cross-sectional study

DURHAM, Jo
SYCHAREUN, Vanphanom
SANTISOUK, Phonevilay
CHALEUNVONG, Kongmany
2016

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Purpose: User satisfaction with assistive devices is a predictor of use and an important outcome measure. This study evaluated client satisfaction with prosthetic and orthotic assistive devices and services in three provinces in the Lao People’s Democratic Republic.

 

Method: A cross-sectional study was done, using the Quebec User Evaluation of Satisfaction with Assistive Technology questionnaire. The sample was drawn from the client register of three of the five Rehabilitation Centres in the country which are under the Ministry of Health’s Centre for Medical Rehabilitation. Clients were eligible if they had received their device in the 12 months prior to the study. Based on the number of registered clients, the sample size was calculated as 274 with a 95% confidence interval, with the final sample N = 266. Qualitative semi-structured interviews were also conducted (N = 34).

 

Results: Most of the assistive devices were in use at the time of the survey and were reported to be in good condition (n = 177, 66.5%). The total mean score for satisfaction (services and device combined) was 3.80 (SD 0.55). Statistically significant differences were observed in satisfaction between gender and location of residence. Effectiveness and comfort were rated as the two most important factors when using a device; at the same time, these were the most common reasons for dissatisfaction and sub-optimal use.

 

Conclusion and Implications: Clients were quite satisfied with the assistive device and services provided, yet many reported barriers to optimal device use and difficulties in accessing follow-up services. There is a need to examine how prosthetic and orthotic devices can be improved further for better comfort and ambulation on uneven ground in low-resource contexts and to address access barriers.

Physiotherapy care for adults with paraplegia due to traumatic cause: A review

GUPTA, Nalina
RAJA, Kavitha
2016

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Purpose: This review aimed to identify the practice guidelines/ recommendations for physiotherapy management in acute /post-acute/ chronic/long-term phase of rehabilitation of clients with paraplegia due to traumatic causes.

 

Methods: Of the 120 articles retrieved, 26 met the inclusion criteria. After quality appraisal, 16 articles were included in the study. Data were extracted under the sub-headings: physiotherapy care in acute, chronic and long-term community stage; expected outcomes; effect of physical interventions; morbidities; wheelchair characteristics and standing.

 

Results: There is strong evidence in support of strength and fitness training, and gait training. Parameters of strength training (frequency, duration and intensity) vary. There is lack of evidence on passive movements, stretching, bed mobility, transfers and wheelchair propulsion. Preservation of upper limb functions is an important consideration in caring for clients with paraplegia.

 

Conclusion: Many areas of rehabilitation interventions remain inadequately explored and there is a need for high quality studies on rehabilitation protocols. Client preferences and feasibility are other areas that should be explored.

 

Limitations: The search criteria of articles in the English language or articles translated in English is a reason for this limitation. Articles related to advanced therapeutic interventions such as robot-assisted training, and transcranial electrical and magnetic stimulation were excluded from the study.

Virtual Reality Games as an Intervention for Children: A Pilot Study

Muneer, Reema
Saxena, Tanushree
Karanth, Prathibha
2015

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Purpose: This pilot study explored the use of virtual reality-based games as an enjoyable yet effective intervention to improve skills in children with developmental disabilities. Although the intervention was primarily targeted at the enhancement of motor skills, the children’s communication, cognitive and social/emotional skills were also monitored and changes, if any, were tracked during this period.

 

Methods: Therapists guided 5 children (4 boys with Autism Spectrum Disorder and 1 girl with Learning Disability) while they played carefully chosen games on the Xbox-Kinect, in individual sessions. Each child attended between 4 and 6 sessions over a span of one month. Therapists used a 4-point rating scale to evaluate specific skills in each of the four domains (motor, communication, cognitive and social/emotional) at the beginning of the intervention, and again at the end.

 

Results: Pre-and post-intervention scores revealed that the children made significant progress, not only in certain motor skills but also in skills from the cognitive and social/emotional domains. None of the children regressed in any of the skills monitored from the different domains.

 

Conclusions: Initial findings indicate that virtual reality games provide a useful platform for building interventions for children with developmental disabilities. There is much scope for future research in this area. The results of the study provide insights into the skills which might require prolonged, consistent inputs during the intervention, and the ones which might be acquired quickly through leaps in learning. The different ways in which children with varied developmental profiles might benefit from virtual reality-based interventions were also highlighted.

Barriers in Using Assistive Devices among a Group of Community-dwelling Persons with Lower Limb Disabilities in Sri Lanka

WEERASINGHE, Inoka E
FONSEKA, P
DHARMARATNE, S D
JAYATILAKE, J A M S
GIELEN, A C
2015

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Purpose: Rehabilitation with assistive devices is of great benefit to people with limb disabilities, enabling them to lead independent and productive lives. While assistive devices improve the quality of life of persons with lower limb disabilities by facilitating activities of daily living, there are also many barriers to their use. This study aims to describe these barriers among community-dwelling persons with lower limb disabilitiesin central Sri Lanka.

 

Methods: A community survey was conductedmong adults between 18 and 59 years of age, to find persons with lower limb disabilities in Kandy Municipal Council area, in the central province of Sri Lanka. This was followed by purposive sampling to select a sub-sample of 12 individuals with unilateral lower limb disabilities for a qualitative study using in-depth interviews. Unilateral lower limb disabilities were identified using a clinical examination and World Health Organisation Disability Assessment Schedule 2.0 (WHODAS 2.0). A qualitative thematic content analysis was used to evaluate the interview text.

 

Results: Participants described several barriers in using assistive devices, such as unaffordable assistive technology like wheelchairs and artificial limbs, unavailability of appropriate assistive technology, difficulties associated with repair and maintenance, and problems in accessibility. Limited knowledge of modern technology also restricted their choice of better devices. Psychological barriers and stigma in using assistive devices directly affected their social lives and day-to-day activities as well.

 

Conclusion and Implications: People with lower limb disabilities face multiple barriers in using assistive devices. These barriers need to be addressed by improving local infrastructure and accessibility facilities, public awareness and funding, and ensuring continuous supply and maintenance services.

Developing the Content of a New Quality of Life Questionnaire for Children with Hearing Loss

RAJ, L J
SWARNAKUMARI, P
MARTINA, T
2014

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Habilitation and rehabilitation call for a paradigm shift from the traditional intervention programmes which focus on physical functioning to programmes that include aspects of physical, psychological and social wellbeing.

 

Purpose: To develop a quality of life instrument, using focus group discussions to assess the outcomes of interventions for school-going children with hearing loss.

 

Methods: Separate focus group discussions were held with children with hearing loss between 8 and 18 years of age, special educators and mothers. Focus group discussions were conducted separately for boys and girls. Each focus group had 8–10 participants. In-depth interviews were conducted with the heads of institutions and rehabilitation professionals. Fathers had to complete self-administered questionnaires. The focus group discussions were guided by topics and probes drawn from literature reviews, and were audio recorded, transcribed and analysed.

 

Results: Around 421 problem statements were classified under 7 themes: Educational implications; Social integration; Psycho-social wellbeing; Family relationships; Speech, language and communication; Leisure and recreation; and General functioning. Education and career aspirations were considered to be most important. The problem statements revealed that the primary focus of training was on improving academics. Integration and feeling comfortable with social situations were cited as limitations; as also, the preference for friendship with people of similar abilities. For the majority of children, leisure and recreation was limited to watching television. Parents and siblings were considered vital to their progress and achievements.

 

Conclusions: Multidimensional and varied perspectives of different stakeholders, especially family members, are necessary for a comprehensive analysis of the impact of hearing loss on the quality of life of school-going children.

 

Quantitative Exploratory Evaluation of the Frequency, Causes and Consequences of Rehabilitation Wheelchair Breakdowns delivered at a Paediatric Clinic in Mexico

TORO, M L
GARCIA, Y
OJEDA, A M
DAUSEY, D J
PEARLMAN, J
2012

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Purpose: The United Nations Convention on the Rights of Persons with Disabilities recognises assistive technology such as wheelchairs (WCs) as a tool for social inclusion for this population. In less resourced settings, organisations lack information about effective models of WC service provision. The goal of this study was to investigate the lifespan of WCs and whether they provided reliable mobility, at one clinic in Mexico.

 

Methods: Caregivers of children, who had requested replacements for their WCs from a clinic in Mexico, were interviewed in Spanish. Among others, the questions pertained to repairs/modifications, adverse events and WC usage characteristics. The owners exchanged their WCs for new ones at the clinic, and the maintenance status of each returned WC was evaluated using the WC Assessment Checklist (WAC).

 

Results: Twenty-three donated WCs, used by children aged 3 to 14 years for an average of 19 months, were evaluated. Brakes (n=18), seat and back-sling upholstery (n=11 and 7 respectively), and armrests (n=14) were the components that failed most frequently. A total of 26 adverse events due to WC failure were reported. Adverse events were significantly associated with poor WAC scores (rs=-0.544, p=0.007).

 

Conclusions: Poor WC reliability, associated with adverse events which could undermine social engagement, indicates the need for a stronger WC and for regular maintenance. For instance, brake failures which were most often associated with adjustment issues, could have been resolved with maintenance, while seat and back-sling upholstery and armrest failures suggest that the WC may not be appropriate for the environment. Future work should investigate the robustness of these WCs using standardised methods (ISO 7176), as well as the impact of maintenance interventions on WC reliability.

Assistive Technologies in a Workplace Environment: Barriers for the Employment of People with Disabilities

JAKOVLJEVIC, M
BUCKLEY, S
2011

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Purpose: The employment equity policies and implementation of technology- specific guidelines within the South African ‘Code of Good Practice on the Employment of People with Disabilities’, was created to encourage employment equity for employees with disabilities, by companies in Johannesburg.

 

This study reports on the results of the investigation in assistive technologies in a workplace environment, and barriers for the employment of persons with disabilities in the South African environment.

 

Method: Qualitative data, collected from two retail and service companies in the form of semi-structured individual and focus group interviews, was analysed using a constant comparative method, identifying major themes and sub-themes.

 

Results: A surprisingly small number of persons with disabilities were found to be employed by participating companies, which tended not to focus on these people when formulating their policies and plans. In addition, technological aspects of the Code were largely unacknowledged, with little effort being made to accommodate the needs of persons with disabilities. An even lower incidence of assistive technology usage was found, along with a large number of conceptual and perceived barriers that hinder the employment of persons with disabilities and the implementation of appropriate technology.

‘Welcome to My Life!’ Photovoice: Needs Assessment of, and by, Persons with Physical Disabilities in the Kumasi Metropolis, Ghana

TIJM, M M
CORNIELJE, H
EDUSEI, A K
2011

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Persons with physical disabilities face many architectural and social barriers to community participation. This research employed the ‘Photovoice’ method. The aim was to gain insight into the daily lives of persons with physical disabilities, and to assess their needs in the Kumasi metropolis. Participants in this study were trained and instructed to photograph their everyday activities, so as to document their struggles and concerns, to promote critical dialogue and to reach policymakers. Results indicated a number of concerns, such as poor accessibility to public toilets, transport and buildings, as well as a need for attitudinal change and equal opportunities. Other needs which were raised by theparticipants included economic empowerment, marketable vocational training, accident prevention, affordable and quality rehabilitation, and the establishment of emergency shelters. It was concluded that the most pressing needs of persons with disabilities were related to overall social, employment and accessibility issues. Finally, the ‘Photovoice’ methodology offered a suitable, structured, and participatory way to assess the needs of persons with disabilities. It gave this marginalised group a voice through photographs, and formed an excellent way of disseminating the findings of this study to the stakeholders involved.

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