Resources search

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

Expand view

Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

Multifaceted interventions for supporting community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

Expand view

This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries.

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

 

Campbell Systematic Reviews. 2020; 16:e1092.

https://doi. org/10.1002/cl2.1092.

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich

KRIEGER, Beate
PISKUR, Barbara
SCHULZE, Christina
BEURKENS, Anna
MOSER, Albine
May 2020

Expand view

Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.

 

Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.

 

Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.

 

Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.

Children with hearing impairment in Malawi, a cohort study

MULWAFU, Wakisa
et al
October 2019

Expand view

The aim of this research was to assess the outcome of children with ear and hearing disorders 3 years after initial diagnosis, in terms of referral uptake, treatment received and satisfaction with this treatment. It also aimed to assess the social participation of the affected children, specifically, their ability to make friends and communicate needs, and their enrolment at school

752 children had been diagnosed in 2013 as having a hearing impairment and 307 (40.8%) children were traced for follow-up in 2016. 

 

Bulletin of the World Health Organization, Volume 97, Number 10, October 2019, 645-728

http://dx.doi.org/10.2471/BLT.18.226241

The role of rehabilitation care workers in South African healthcare: A Q-methodological study

GAMIET, Shamila
ROWE, Michael
October 2019

Expand view

Background: The South African Department of Health identified the need to train a new cadre of community health worker (CHW) in the field of rehabilitation as part of their 2030 Health Plan that aims to improve primary healthcare (PHC) and community-based rehabilitation (CBR). Community health workers can be effectively utilised in CBR if their role is understood and their potential is not limited by professional protectionism and scepticism. A clear understanding of the scope of practice of a new cadre will minimise resistance by health professionals.

 

Objectives: The aim of this study was to explore rehabilitation health professionals’ perception of the role of the new cadre, called rehabilitation care workers (RCWs), in South African healthcare.

 

Methods: Q-methodology was used to gather and interpret the data. A convenient sample of 16 health professionals participated in the study. Participants ranked statements about the role of the RCWs from strongly agree to strongly disagree. Data were entered into PQMethod software program for statistical and factor analysis.

 

Results: Two factors emerged. Participants loading onto Factors 1 and 2 were of the opinion that RCWs’ role would be to strengthen PHC and CBR and to promote participation of people with disabilities (PWD) in intermediate care and community.

 

Conclusion: Rehabilitation health professionals’ positive perception of the new cadre is encouraging so that it could ensure their effective utilisation in CBR. Rehabilitation care workers were perceived as capable of enhancing the lives of PWD by ensuring inclusive development.

 

 

African Journal of Disability, Vol 8, 2019

Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial

HEPPE, Eline C M
WILLEMEN, Agnes M
KEF, Sabina
SCHUENGEL, Carlo
May 2019

Expand view

Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.

 

Materials and methods: Adolescents (15–22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.

 

Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI –0.30, 0.21, d = 0.1]; social participation composite [95% CI –0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

Expand view

Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

CAREY, Eileen
2018

Expand view

Purpose: Choice and autonomy are recognized as values facilitating genuine self- determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required.

 

Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern.

 

Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis.

 

Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.

 

Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making.

Good practices for the implementation of the CRPD in Indonesia (2015-2017) - Making it Work

HANDICAP INTERNATIONAL
WIDJAYA, Hartaning
2018

Expand view

In Indonesia, the Advocacy for Change project aimed to increase the effective participation of people with disabilities in inclusive development efforts at the local level, and promote their participation in development at the national level. Specifically, the Advocacy for Change project sought to improve and monitor the people with disabilities' access to local government processes and existing social services.

Six case studies are presented:

  • Community Based Forum as Community Public Space (The culture is the key)
  • Building the Foundation of Inclusion with Sendangadi Village Government
  • WKCP (Cerebral Palsy Family Association) Health Initiative for Health Budgeting Advocacy
  • Citizen Based Forum as a Common Space to Encourage the Government to Build a Disability-Friendly Village in Mata Air Village, Kupang Tengah Sub- district, Kupang District
  • Inclusion of Disabled Persons in Noelbaki Village Women's Forum 
  • The role of disabled people organization in participation of development with Bappeda Kupang Municipality

 

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.

Rapid assessment of disability in the Philippines: understanding prevalence, well-being, and access to the community for people with disabilities to inform the W-DARE project

MARELLA, Manjula
DEVINE, Alexandra
ARMECIN, Graeme
et al
August 2016

Expand view

The aim of this study was to estimate the prevalence of disability and compare the well-being and access to the community between people with and without disabilities. A population-based survey was undertaken in District 2 of Quezon City and in Ligao City. 60 clusters of 50 people aged 18 years and older were selected with probability proportion to size sampling from both locations. The Rapid Assessment of Disability (RAD) survey was used to identify people with disabilities based on their responses to activity limitations. The levels of well-being and access to the community for people with disabilities were compared with controls matched by age, gender, and cluster. Information on barriers to accessing the community was also collected.

Popul Health Metrics 14, 26 (2016)

DOI 10.1186/s12963-016-0096-y

Community Mobilisation in a CBR Programme in a Rural Area of Sri Lanka

HIGASHIDA, M
2014

Expand view

Purpose: This article examines community mobilisation in a model administrative division of the national community-based rehabilitation (CBR) programme in Sri Lanka.

 

Method: After comprehensively analysing local human resources related to the CBR programme at the study site, the focus of the study was on volunteers (n = 17), youth club members (n = 7), and local government officers from multiplesectors (n = 33). A semi-structured interview, focus group discussion and case information provided data, which was collected through social work practice in line with a previously developed one-year action plan. Narrative data was analysed using a qualitative procedure.

 

Results: The findings suggest that the local supporters, including people with disability, made a positive contribution to the CBR programme, and felt satisfied with the activities. Although the local resources and opportunities for people with disability are limited, the analysis points to the importance of coordination, attitudes, and mutual support rituals by villagers, in promoting community mobilisation.

 

Conclusions: Although it is an exploratory study with a limited sample of stakeholders at one study site in Sri Lanka, the study contributes to a growing body of literature that suggests the significance of community mobilisation in CBR. Future studies could explore some of the issues identified here, such as promotion of community-based inclusive development (CBID). However, since a limited sample of stakeholders was involved, findings can be generalised only to a similar context and setting.

Strengthening participation of children and young people with disability in advocacy

SIMMONS, Dr. Catharine
ROBINSON, Dr. Sally
October 2014

Expand view

Participation by children and young people in advocacy and change-making can not only improve and foster positive change in their own lives, but also influence the lives of others. When young people’s participation is supported, meaningful and engaged, multiple benefits accrue; their perspectives and experiences bring a unique contribution and can result in rights-based empowerment, enacted citizenship and improved relationships. This has the potential to shape policy, to increase the relevance and responsiveness of organisations they use, and to influence change in their communities in positive ways

 

However, there are significant issues and a range of barriers that discourage, prevent or actively exclude children and young people with disability from participating. A culture of low expectations, social and cultural barriers, relationship and identity difficulties and practical hurdles exist for many young people. As a result, many are precluded from participation, particularly around change-making activities

 

This paper examines how meaningful participation of children and young people with disability in advocacy and change-making can be strengthened. In the paper CDA calls for the promotion of children and young people’s participation as active and valued community members

Empowerment in Community-based Rehabilitation and Disability-inclusive Development

KUIPERS, P
2014

Expand view

Purpose: This paper seeks to contribute to discussion on the understanding and measurement of empowerment of people with disabilities in developing countries. A novel, text analysis approach was used to depict the way in which empowerment is characterised in conventional measures in Western settings. This was then compared with depictions and analyses of the way in which empowerment is characterised in documents that have more relevance to developing countries.

 

Method: First, computer-based content and concept analysis was applied to three key empowerment measures. This was compared with analysis of responses to a recent online survey of empowerment conducted by the United NationsDepartment of Economic and Social Affairs (UN-DESA). Visual representations in the form of “word clouds” were generated to depict key concepts within each data source. Second, to provide specific detail regarding how empowerment has been described in documents which relate to developing countries, more detailed computer-assisted lexical analysis was performed on the text of responses to the UN-DESA survey, and on the text of the Empowerment component of the CBR Guidelines.

 

Results: Initial “word clouds” illustrated considerable discrepancy between concepts inherent in the three most relevant empowerment measures when compared with responses to the UN-DESA survey relating to empowerment in a development context. Subsequent lexical analysis depicted greater specificity and ranked the concepts associated with empowerment in key disability and development-related documents.

 

Conclusions: Conventional Western measures of individual empowerment may not adequately encompass the broader social, economic and community orientation of empowerment as described in documents from disability and development circles. Further research is required to substantiate these novel and speculative indications.

Training CBR Personnel in South Africa to contribute to the Empowerment of Persons with Disabilities

RULE, S
2013

Expand view

Purpose: Recent conceptualisations of community based rehabilitation include empowerment of persons with disabilities as a key activity. This article reports on a study which explored the training of mid-level CBR workers in South Africa, with a specific focus on the ability of the course participants to address the oppression and empowerment of persons with disabilities.

 

Method: Over a three-year period, one cycle of action research was conducted in a non-government organisation that conducts mid-level CBR training in South Africa. Data collection methods included in-depth interviews with staff, students and past graduates of the course, document analysis, participatory rural appraisal techniques and two focus group discussions with the students’ clients.

 

Results: Personnel, who had been trained in CBR before the year 2003, were found to have some difficulty in explaining the social model of disability and the oppression of persons with disabilities at a cultural and structural level. It was noted that after changes were implemented in the CBR course, the students had an orientation to working with, rather than for, persons with disabilities. They began to understand the complexities of empowerment and also engaged in social action to address the oppression of persons with disabilities.

 

Conclusions: The CBR Guidelines require a new skill-mix in mid-level CBR personnel. This study illustrates a possible training approach which can contribute to the development of these skills.

Identifying and supporting vulnerable people in community-led total sanitation : a Bangladesh case study

FAWZI, A
JONES, H
2011

Expand view

Community – led sanitation often neglects the poorest and most disadvantaged people in society as they are often unable to participate. This paper looked at the experiences of three CLTS communities in Bangladesh. It found that a well being ranking, amongst other things, should be used to help identify vulnerable members in the community and that vulnerable people themselves strongly believe in the power of CLTS to improve their livelihoods and their importance in the participation of CLTS activities. Furthermore, vulnerable people are motivated to move up the sanitation ladder and most households have made improvements to their latrine. Finally, the installation of toilet seats on latrines to aid disabled people has in some cases decreased the sanitation independence of other household members 

Supporting persons living with trauma by rebuilding social and community links : an example of a community-based mental health approach after the Rwandan genocide of the Tutsis

PHAN, Xuan
November 2009

Expand view

This report provides an overview of the lessons learned from a Handicap International community-based mental health project for children and adolescents experiencing psychological suffering after the Rwandan genocide of the Tutsis. It highlights successes and limitations of the project, as well as recommendations for the project’s continuation. This report would be of interest to mental health practitioners, mental health service providers and community mental health organisations

Participatory communication in malaria control : why does it matter?

DUNN, Alison
October 2005

Expand view

This paper reviews current approaches to malaria control, focusing on effective ways of engaging with local communities in participatory ways. It argues for considering human behaviour as well as mosquito behaviour in malaria control efforts. Engaging with people at community level is critical to developing interventions that are appropriate to the local context. Complex social and environmental factors, such as gender relationships, the cost of drugs, and the appropriateness of services mean that communication processes are vital, and will require sustained and coordinated international support and commitment

Do unlikely partners contribute to an informed society? [whole issue]

MCBEAN, Bridget
December 2004

Expand view

This brief resource highlights the link between development and innovation, and knowledge and information accessibility. The process of creating an informed society depends not only on the availability of information technology and infrastructures, but also and primarily on people, as the creators and users of knowledge. The paper calls for improvements in the e-readiness of developing countries, higher literacy levels and better protection of the right to information

E-bulletin