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Experiences of lower limb prosthesis users in Kenya: a qualitative study to understand motivation to use and satisfaction with prosthetic outcomes

MATTICK, Kate
OLDFREY, Ben
DONOVAN-HALL, Maggie
MAGOMERE, Grace
GAKUNGA, Joseph
HOLLOWAY, Catherine
December 2022

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An estimated 1.5 million people undergo limb amputation each year [1]. Low- and middle-income countries (LMICs) are projected to have a rapid increase in people living with an amputation in the coming years due to prevalence of non-communicable disease, trauma and conflict. This paper explores the personal and system factors that motivate and enhance outcomes for patients accessing a prosthetic service and using a lower-limb prosthesis within a low resource setting.

This study employed a qualitative approach to explore the motivations and satisfaction of individuals with lower limb loss engaging with a prosthetic service in Mombasa, Kenya. In-depth interviews were conducted over Microsoft Teams with 10 lower limb prosthesis users and thematic analysis was applied.

 

Disability and Rehabilitation Volume 45, 2023 - Issue 26

https://doi.org/10.1080/09638288.2022.2152875

"We bear it and accept our fate” Perceptions of healthcare access from people with disabilities in Cox’s Bazar

PANELLA, Amanda
June 2022

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In November and December 2021, Ground Truth Solutions (GTS) and the International Organisation for Migration’s (IOM) Needs and Population Monitoring unit (NPM) conducted qualitative interviews with persons with mobility and vision impairments from Rohingya refugee and host community populations with the aim of better informing and supporting agencies in developing disability-inclusive programmes and engagement activities. These interviews focused on access to health services, aiming to gain insight into how people with disabilities experience engaging with healthcare services – as well as perceived barriers to access. It also looked at health information needs so that the humanitarian community will be better equipped to identify gaps in programming, deliver more equitable services, and build trust with this marginalised group. To weave tangible experiences into the narrative and bring findings to life, this research took a ‘user journey’ approach to create a set of ‘personas’ derived from key informant interviews with Rohingya and Host Community people with disabilities in Cox’s Bazar, resulting in this highly illustrative report.

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

 

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

 

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

 

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

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

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

Getting to know cerebral palsy|Working with parent groups : a training resource for facilitators, parents, caregivers, and persons with cerebral palsy

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
et al
2013

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This manual aims to increase knowledge and skills in caring for a child with cerebral palsy. Research highlighted the significant needs of the caregivers, and how they can gain a huge amount of support from meeting with each other in an understanding environment. The manual is divided into 11 modules and promotes a participatory learning approach with an emphasis on the empowerment of parents and caregivers. It provides an opportunity for parents to organise themselves and to consider strategies at the community level to address some of the issues which affect them and their child
Note: An online community that aims to support practitioners share their learning and experiences around the parent training manual is available from the weblink. Members can share questions and perspectives, news items and resources with eachother via email or through a community website

Impact of community-based rehabilitation on persons with different disabilities

DEEPAK, Sunil
BIGGERI, Mario
MAURO, Vincenzo
KUMAR, Jayanth
GRIFFO, Giampiero
2013

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There are some barriers that persons with different kinds of impairments commonly face, and there are also some impairment-specific barriers. Disaggregated data are needed to assess the impact of different CBR activities on different groups of persons with disabilities.

 

Purpose: This article assesses the impact of CBR on key variables linked to the five domains of the CBR Matrix, on 4 groups of persons with disabilities - visual, hearing and speech, physical and intellectual disabilities.

 

Method: A questionnaire survey was carried out involving 2,332 persons with disabilities, in a random stratified sample of villages covered by a CBR programme, in 9 sub-districts of Karnataka state (India) and in a control area. Data were collected pertaining to different activities in the lives of persons with disabilities. Through a participatory approach involving CBR workers and DPO representatives, some key indicators were identified to assess the impact of CBR on the five domains of the CBR Matrix - health, education, livelihood, social participation and empowerment.

 

Results: Among all the 4 groups of persons with disabilities, the CBR programme was found to have had a positive impact across all the five domains of the CBR Matrix. However, there was no uniform impact on different variables among the 4 groups; different groups of persons with disabilities benefited differently from different activities. Persons with physical disabilities seemed to benefit in more areas compared to persons in the other groups.

 

Conclusions: CBR programmes can have a positive impact on persons with visual, hearing and speech, physical and intellectual disabilities. Disaggregated data can help CBR programmes to identify groups of persons who benefit less from specific activities and adopt strategies to improve their participation.

 

 

Disability, CBR and Inclusive Development, Vol. 24, No. 4

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