Resources search

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

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

Expand view

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

Expand view

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

Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

Expand view

Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

HARTLEY, Sally D
YOUSAFZAI, AK
KAAHWA, MG
FINKENFLÜGEL, H
WADE, A
BAZIRAKE, G
DRACHLER, ML
SEELEY, J
ALAVI, Y
MATAZE, W
MUCURNGUZI, E
2017

Expand view

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

 

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

 

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

Advocacy Campaign for the Rights of People with Disabilities: A Participatory Action Research within a Community-based Rehabilitation Project in Vangani, Maharashtra

JAISWAL, Atul
GUPTA, Shikha
2017

Expand view

Purpose: This paper aimed to demonstrate how participatory action research (PAR) within a Community-based Rehabilitation (CBR) project facilitated community participation to advocate for the rights of people with visual impairment. An advocacy campaign, led by the local people with and without disabilities, was launched for the construction of an accessible foot over- bridge (FOB) at Vangani railway station in Maharashtra, India.

 

Methods: The PAR approach was used to explore the issues faced by the local people with visual impairment. It ensured maximum community consultation, engagement and, consequently, meaningful outcomes for the community. Advocacy tools such as video documentary, online petition, media advocacy, and signature campaign were employed to publicise the issue on a larger platform. Sources for this paper included quantitative data from the survey of Vangani community and documents such as CBR project reports, media coverage articles, minutes of the meeting and correspondence with the Central Railways during the advocacy campaign that was conducted from 2012 -  2015.

 

Results: After 12 months of consistent advocacy, the Ministry of Railways sanctioned INR 15 million for the construction of the foot over-bridge. The construction work on the foot overbridge was completed in December 2016 and now it is open for public use..

 

Conclusion and Implications: This study illustrates how PAR within a CBR project successfully used an advocacy campaign as a tool for community participation, action and change. Although geographically limited to rural pockets of Maharashtra state, the learning experiences brought out some of the elements crucial for the success of an advocacy intervention within CBR programmes for the rights of people with disability in India.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

Expand view

Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

E-bulletin