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Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Madden, Rosamond H
et al
2016

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Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community- based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

 

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts andstructures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

 

Results: The MM&M is now freely available on-line at thttp://sydney.edu. au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

 

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data.To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team including collaboration with CBR stakeholders.

Teaching Children with Learning Difficulties via Community-Based Rehabilitation Projects in rural Sri Lanka

Wikremesooriya, Shalini Felicity
2016

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Teachers in rural Sri Lanka find it challenging to support students with Learning Difficulties (LD) in regular classrooms. As a result, students with LD often quit school early. Community- Based Rehabilitation (CBR) projects located in rural areas sometimes provide learning opportunities for students who are school dropouts.

 

Purpose: The research focussed on identifying an effective teaching approachthat Developmental Assistants (DAs) can employ when teaching students with LD.

 

Methods: An action research methodology with two action cycles was selected for this purpose. Each cycle consisted of four stages: analysing, reflecting, planning, and implementing and monitoring. Data collection involved semi- structured interviews and real-time observations. A combination of qualitative and quantitative methods was adopted for data analysis. Research participants included 11 students aged 8-14 years, their parents and two DAs.

 

Results: Outcomes suggest that students with LD actively engage in learning when an integrated approach that uses thematic units which reflect the students’ world, is in force. They also benefit when some elements of the behavioural approach to teaching-learning: explicit direct instruction, modelling, scheduled practice, reinforcement and feedback, are combined with certain components of the constructivist approach: independent work, group discussions and reflection.

 

Conclusions: The study demonstrates that students with LD can succeed when the teaching-learning process is modified to suit their needs. Hence, CBR project workers ought to be trained to plan and design lessons that meet the needs of students with LD. It further validates the role CBR projects can play in diminishing negative views on disability and in creating inclusive societies. 

 

Limitations: The study’s illuminative design was appropriate within a limited sample of students. However, this sample is not wholly representative of the multicultural and multi-religious student population with LD in hard-to-reach areas of Sri Lanka.

“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education

Elphick, Jean
De SasKropiwnicki, Zosa
Elphick, Rosalind
2016

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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.

 

Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.

 

Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.

 

Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured. 

 

In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.

China’s Mental Health Law: Analysis of Core Concepts of Human Rights and Inclusion of Vulnerable Groups

Hussey, Meghan Marie
Mannan, Hasheem
2016

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Purpose: The aim of this research is to assess China’s first Mental Health Law in terms of Core Concepts of Human Rights and equitable coverage of Vulnerable Groups.

 

Methods: The EquiFrame analytical tool provided the framework for evaluation of the inclusion of Core Concepts of Human Rights as well as Vulnerable Groups in the Law.

 

Results: China’s Mental Health Law scored 83% for Core Concept coverage, with a Core Concept Quality score of 76%. The Law had a 42% score for Vulnerable Groups coverage. This gave the Law an overall score of “Moderate” in terms of Human Rights coverage.

 

Conclusions: China’s Mental Health Law is a landmark document providing the country’s first ever legal framework for mental health. While the Law scores high on level commitment in Core Concepts of Human Rights, the potential for equitable protection would be enhanced by increased inclusion of Vulnerable Groups.

 

Limitations: Further analyses of health and social policies in the People’s Republic of China from a Human Rights perspective would provide a deeper understanding of the Law in context.

Towards a ‘mind map’ for evaluative thinking in Community Based Rehabilitation: reflections and learning

WEBER, Joerg
GRECH, Shaun
POLACK, Sarah
2016

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Calls for evaluations in Community Based Rehabilitation (CBR), in particular those of a participatory nature have stepped up in recent years. Much of this shifting discourse has emerged in response to the fact that evaluations overall remain scarce. Furthermore, very little is known about the impacts of CBR in practice and if/how it benefits persons with disabilities and their families on the ground. Nevertheless, and despite the calls for participatory approaches, the few existing efforts are too often targeted at creating standardised evaluations frequently at the expense of voice, participation and flexibility. This paper reports on a series of critical workshops held in Jamaica with CBR workers and other stakeholders, the objectives of which included discussions and reflections on emerging issues in localised, locally driven and responsive participatory evaluation frameworks. The findings highlight how participants favoured a flexible, adaptive and iterative approach that was not rigid, structured or per-determined by outsiders. Instead, they favoured an approach that created a safe space for sharing and learning, prioritised their narratives, and that was directly linked to and that fed directly into action on the ground. The paper concludes with the call for critical, engaged and bottom-up approaches that move away from control-oriented approaches in CBR towards more experimental and adaptive problem and process-oriented approaches, that embrace complexity and that are consistently responsive to an ever changing context.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

2016

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Articles include:

  • Towards a ‘mind map’ for evaluative thinking in Community Based Rehabilitation: reflections and learning
  • Participation of persons with disabilities in political activities in Cameroon
  • The medical inadmissibility of intellectual disability: A Postcolonial reading of Canadian immigration systems
  • Research principles and research experiences: critical reflection on conducting a PhD dissertation on global health and disability
  • Contingencias normalizadoras en la relación Discapacidad–Trabajo en Francia y Uruguay

Community-based rehabilitation in a post-soviet environment in Azerbaijan : where society meets ideology

BURCHELL, Gwen
2015

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This paper explores UAFA’s experience, since 2002, in working with Azerbaijani stakeholders to move from the medical approach to disability, propagated by the Soviet model of planning and implementation, to a social, community-based approach. The paper highlights the common misconceptions and how these can be overcome, including the policy gaps that challenge effective implementation.

 

The importance of creating and maintaining a core team is discussed, alongside the process that UAFA has developed for building up teams of CBR workers. Finally, the paper raises the issue of introducing outcomes-based evaluation in a society that has no such prior experience, followed by an account of the continual challenge faced by most programmes–namely, how to achieve sustainable funding.

 

 

Disability, CBR and Inclusive Development, Vol 26, No 3

Towards a Core Set of Clinical Skills for Health-Related Community Based Rehabilitation in Low and Middle Income Countries

O’Dowd, Jessica
MacLachlan, Malcolm
Khasnabis, Chapal
Geiser, Priscille
2015

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Purpose: This research aims to identify a core set of clinical skills for working in a Community Based Rehabilitation (CBR) setting, and to discuss whether they are appropriate for task shifting to a new or an alternative cadre of rehabilitation workers.

 

Methods: The study focussed on work activities relating to the health component of the CBR Matrix. 40 health professionals working in CBR in Low and Middle Income Countries (LMIC) were surveyed to discover the clinical skills that were used most frequently during the past 3 months and to determine which of these skills were deemed most important in a CBR setting.

 

Results: A core set of clinical skills for health-related CBR work in LMIC were identified: advocacy and sensitisation; assessment, monitoring and reporting; behavioural and cognitive interventions; collaboration and referral; communication; continuing professional development; education; gait training; group work; home-based rehabilitation; manual therapy; neurofacilitation techniques; positioning; prescription of strengthening exercises; prescription of stretching programmes; provision of aids, assistive devices and technologies; psychosocial support; recreational therapy; self-care; sensory interventions; supervision; upper body rehabilitation; vocational rehabilitation and working with families.

 

Conclusions: It is possible to identify a core set of health-related CBR skills. These may be considered in the development of training programmes for new or alternative cadres of CBR workers, using a task-shifting model including appropriate support, supervision and referral mechanisms.

Implications: Further research is required to establish the generalisability of the skills sets identified here, both across contexts and different client groups and their needs. The identification of core sets of skills for other areas of the CBR Matrix - livelihood, social, empowerment and education – could similarly facilitate access to these domains for people with disabilities.

Community based rehabilitation for people with disabilities in low and middle income countries : a systematic review

IEMMI, Valentina
et al
September 2015

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This Campbell Collaboration systematic review assesses the effectiveness and cost-effectiveness of community-based rehabilitation (CBR) for people with physical and mental disabilities in low- and middle-income countries, and/or their family, their carers, and their community. This review identified 15 studies that assessed the impact of community-based rehabilitation on the lives of people with disabilities and their carers in low- and middle-income countries. The studies included in the review used different types of community-based rehabilitation interventions and targeted different types of physical (stroke, arthritis, chronic obstructive pulmonary disease) and mental disabilities (schizophrenia, dementia, intellectual impairment). The authors conclude that the evidence on the effectiveness of CBR for people with disabilities in low- and middle-income countries suggests that CBR may be effective in improving the clinical outcomes and enhancing functioning and quality of life of the person with disabilities and his/her carer and recommend future studies will need to adopt better study designs, will need to focus on broader clients group, and to include economic evaluations

Campbell Systematic Reviews 2015:15

Community based rehabilitation (CBR) : critical perspectives from Latin America

GRECH, Shaun
2015

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“CBR Perspectives from Latin America” is a critical reflection on the multi-dimensional and changing nature of CBR, the perceived benefits, the conundrum of standardized approaches versus community driven processes, the nature of links between CBR and human rights, the resourcing of CBR and the difficulty inherent in taking a short term view in the evaluation of what is a long term process. Not so often are the experiences and perspectives from Latin America shared to a wider audience, making Dr. Grech’s work a remarkable achievement for the Region.”

Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods

Zuurmond, Maria A
Mahmud, Ilias
Polack, Sarah
Evans, Jenny
2015

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Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions.

 

Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.

 

Methods: The study used mixed methods. The PedsQLTMFamily Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012.

 

Results: The mean overall and sub-scale PedsQLTM scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.

 

Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.

Prevalence of Physical Disability among Urban Community-dwelling Adults in Sri Lanka

Weerasinghe, Inoka E
Fonseka, P
Dharmaratne, S D
Jayatilake, J A M S
2015

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Purpose: Assessment of physical disability at the community level is essential for rehabilitation and supply of services. This study aimed to assess the prevalence of physical disability among adults in an urban community in Sri Lanka.

 

Methods: A descriptive cross-sectional study was conducted among 2460 adults (18 -59 years of age) who were selected using cluster sampling. Physical disability was measured using a Physical Impairment Examination Tool (PIET) and World Health Organisation Disability Assessment Schedule II (WHODAS II).

 

Results: Prevalence of physical disability was 4.2% (95% CI= 3.5-5.1). Physical disability was higher among people in the age group of 40-59 years (6.5%, n=64) than among those in the age group of 18-39 years (2.6%, n=39) (P<0.05). Physical disability was more prevalent among females (4.4%, 95% CI= 4.2-4.6) than males (2.6%, 95% CI: 2.4-2.8), and among Tamils (7.8%, 95% CI=5.1%- 10.5%) than Sinhalese (3.3%, 95% CI=2.4%- 4.1%). It was higher among those who were divorced/widowed (58.3%, 95% CI=30.4- 86.2) than among married people (3.6%, 95% CI=2.8- 4.4). The prevalence of physical disability was 7.1% (95% CI=4.6- 9.5) among people with primary education, 4.5% (95% CI=3.4- 5.6) among those with secondary education, and 1.8% (95% CI=0.8- 2.8) among those with tertiary education. It was higher among the unemployed (7.2%, 95% CI=5.7-8.7) than the employed (1.8%, 95% CI=1.1-2.5). Age, gender, ethnicity, marital status, education levels and employment status were significantly associated with physical disability. 

 

Conclusions: Though the prevalence of physical disability appears to be higher among Sri Lankan adults than among people in developed countries, it is less than among people in other South-East Asian countries. Associations with socio-demographic variables were consistent with other studies.

The complexity of rural contexts experienced by community disability workers in three southern African countries

BOOYENS, Margaret
VAN PLETZEN, Ermien
LORENZO, Theresa
2015

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An understanding of rural communities is fundamental to effective community-based rehabilitation work with persons with disabilities. By removing barriers to community participation, persons with disabilities are enabled to satisfy their fundamental human needs. However, insufficient attention has been paid to the challenges that rural community disability workers (CDWs) face in trying to realise these objectives. This qualitative interpretive study, involving in-depth interviews with 16 community disability workers in Botswana, Malawi and South Africa, revealed the complex ways in which poverty, inappropriately used power and negative attitudes of service providers and communities combine to create formidable barriers to the inclusion of persons with disabilities in families and rural communities. The paper highlights the importance of understanding and working with the concept of ‘disability’ from a social justice and development perspective. It stresses that by targeting attitudes, actions and relationships, community disability workers can bring about social change in the lives of persons with disabilities and the communities in which they live.

Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?

VERMEER, Bertine
CORNIELJE, Marije T
CORNIELJE, Huib
POST, Erik B
IDAH, Mike A
2015

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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.

 

Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.

 

Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.

 

Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.

CBR for inclusive development

KOOPMAN, Thomas
March 2015

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A short documentary on community based rehabilitation and disability-inclusive development.in Nepal. This video presents good practices as well as challenges in all domains of the CBR Matrix

Disability under occupation : at the congruence between conflict, religion, & society in Palestine

RASHID, Omar
January 2015

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A dissertation on the Palestinian experience of disability under Israeli territorial occupation. The following key research questions were considered under this dissertation. "First, to locate the perceptions of disability among the disabled in the occupied territories of Palestine, in light of their religious affiliation. Second, to investigate the realities of the disabled within Palestine; and third, to enquire as to whether there had been any differences in the perceptions of disabilities and the realities of those who were injured in conflict, and those who were born with impairment" These questions were answered through a hybrid-methods system of research, with a mix of qualitative and quantitative methods being used

 

Dissertation submitted in part fulfilment of the requirements for a Masters degree at the University of Birmingham

The user has given permission for the original dissertation document to be uploaded to be reproduced and made publicly available on the Source website

A 10-year literature review of the impact of community based rehabilitation

BOWERS, Bob
KUIPERS, Pim
DORSETT, Pat
2015

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A thematic literature review of the impact of CommunityBased Rehabilitation (CBR) in low to middle-income countries was conducted. The review covered the period from 2002 to 2012, and the CBR Matrix was utilised to provide structure for the evidence. Seven studies that investigated the impact of CBR interventions in developing countries were included. A modified harvest plot was used to summarise the strength and nature of evidence provided in relation to the CBR Matrix. Quantitative studies tended to focus on the Health domain, while qualitative studies generally focussed on the Social and Empowerment domains. No evidence of CBR impact was found in the Education domain, and very little evidence was found pertaining to Livelihood. Overall, the evidence base related to the impact of CBR remains limited, both in terms of quantity and robustness of design.

 

 

Disability, CBR and Inclusive Development (DCID), Vol 26, No 2

Capturing the difference we make : community-based rehabilitation indicators manual

WORLD HEALTH ORGANIZATION (WHO)
2015

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This manual presents indicators that "capture the difference (Community-Based Rehabilitation) CBR makes in the lives of people with disabilities in the communities where it is implemented. This manual presents these (base and supplementary) indicators and provides simple guidance on collecting the data needed to inform them. The indicators have been developed to show the difference between people living with a disability and their families and those without disabilities in relation to the information reported in the indicators. This comparability provides valuable information to CBR managers, donors and government agencies alike, which can be used to guide decision-making, support advocacy and improve accountability. Further, the ability of the indicators to provide a comparison of the populations of persons with disability to persons without disability aligns with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which states that persons with disability have equal rights to those without disabilities...this manual serves to standardize the monitoring of differences made by in the lives of people with disabilities and their families, making it possible to compare the difference CBR makes across areas and countries. This manual aligns with the WHO Global Disability Action Plan 2014–2021, and may also be used to monitor other development plans in an easy and efficient way”

Exploring a Model of Effectual Learning for a Student Speech Pathology Placement at a Community-Based Rehabilitation (CBR) Centre in Malaysia

VAN DORT, S
WILSON, L
COYLE, J
2014

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Purpose: Speech-language pathologists in Malaysia typically do not work within CBR. Therefore, exploring the use of services through a non-traditional student placement was a crucial first step in understanding how to develop capacity for such services. It was also important to develop an understanding of the ways in which the implementation of this student placement influenced learning in the context of a Malaysian CBR programme.

 

Method: An action research study was designed to implement and evaluate student speech-language pathology (SLP) placement within a Malaysian community-based rehabilitation (CBR) centre for children with communication disabilities. Data collection involved the learning experiences of key adult stakeholders (students, workers, parents, and the principal research investigator (PI) or lead author).

 

Results: Study findings indicated that all adult learners became better empowered by working together. Workers involved in impairment-focussed rehabilitation activities grew in understanding and skills when supported by relevant professionals.The importance of mentoring as a learning-teaching relationship was demonstrated.

 

Conclusion: While the study has indicated that the setting is beneficial as a student placement, the development of a specialisation in CBR for allied health professionals would be a relevant way forward in the Malaysian context.

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

HIGASHIDA, M
2014

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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.

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