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Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability

ROSENBAUM, Peter L
SILVA, Mindy
CAMDEN, Chantal
January 2021

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Purpose: The worldwide COVID-19 pandemic has changed almost all aspects of our lives, and the field of childhood disability is no exception.

 

Methods: This article is based on an invited lecture by the first author at a conference–the eHealth Summit (“Pediatric Rehabilitation in a Digital Space”)–organized by the other authors and their colleagues in May 2020.

 

Results: The first author offers his own experiences and perspectives, supplemented by comments and observations contributed by many of the 9000+ attendees at this talk, as curated by the second and third authors. The basic messages are that while life for families of children with developmental disabilities, and for service providers who work with them, is significantly altered, many important lessons are being learned.

 

Conclusions: The comments from participants support the currency of the ideas that were presented, and encourage childhood disability professionals to reflect on what we are learning, so that we can seize the opportunities they afford to do things differently–and we believe better–moving forward.

Recommendations for studies on dynamic arm support devices in people with neuromuscular disorders: a scoping review with expert-based discussion

ESSERS, J M N
MURGIA, A
PETERS, A A
JANSSEN, M M H P
MEIJER, K
2020

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Purpose

Neuromuscular disorders are characterised by muscle weakness that limits upper extremity mobility, but can be alleviated with dynamic arm support devices. Current research highlights the importance and difficulties of evidence-based recommendations for device development. We aim to provide research recommendations primarily concerning upper extremity body functions, and secondarily activity and participation, environmental and personal factors.

 

Methods

Evidence was synthesised from literature, ongoing studies, and expert opinions and tabulated within a framework based on a combination of the International Classification of Functioning, Disability and Health (ICF) model and contextual constructs.

 

Results

Current literature mostly investigated the motor capacity of muscle function, joint mobility, and upper body functionality, and a few studies also addressed the impact on activity and participation. In addition, experts considered knowledge on device utilisation in the daily environment and characterising the beneficiaries better as important. Knowledge gaps showed that ICF model components and contextual constructs should be better integrated and more actively included in future research.

 

Conclusions

It is recommended to, first, integrate multiple ICF model components and contextual constructs within one study design. Second, include the influence of environmental and personal factors when developing and deploying a device. Third, include short-term and long-term measurements to monitor adaptations over time. Finally, include user satisfaction as guidance to evaluate the device effectiveness.

Rehabilitation: mobility, exercise & sports; a critical position stand on current and future research perspectives

VAN DER WOUDE, Lucas H V
HOUDIJK, Han J P
JANSSEN, Thomas W J
SEVES, Bregje
SCHELHAAS, Reslin
2020

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Background: Human movement, rehabilitation, and allied sciences have embraced their ambitions within the cycle of “RehabMove” congresses over the past 30 years. This combination of disciplines and collabo- rations in the Netherlands has tried to provide answers to questions in the fields of rehabilitation and adapted sports, while simultaneously generating new questions and challenges. These research questions help us to further deepen our understanding of (impaired) human movement and functioning, with and without supportive technologies, and stress the importance of continued multidisciplinary (inter)national collaboration.

 

Methods: This position stand provides answers that were conceived by the authors in a creative process underlining the preparation of the 6th RehabMove Congress.

 

Results: The take-home message of the RehabMove2018 Congress is a plea for continued multidisciplin- ary research in the fields of rehabilitation and adapted sports. This should be aimed at more individual- ized notions of human functioning, practice, and training, but also of performance, improved supportive technology, and appropriate “human and technology asset management” at both individual and organ- ization levels and over the lifespan.

 

Conclusions: With this, we anticipate to support the development of rehabilitation sciences and technol- ogy and to stimulate the use of rehabilitation notions in general health care. We also hope to help ensure a stronger embodiment of preventive and lifestyle medicine in rehabilitation practice. Indeed, general health care and rehabilitation practice require a healthy and active lifestyle management and research agenda in the context of primary, secondary, and tertiary prevention.

Delivering trauma and rehabilitation interventions to women and children in conflict settings: a systematic review

JAIN, Reena P
METEKE, Sarah
GAFFEY, Michelle F
et al
May 2020

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In recent years, more than 120 million people each year have needed urgent humanitarian assistance and protection. Armed conflict has profoundly negative consequences in communities. Destruction of civilian infrastructure impacts access to basic health services and complicates widespread emergency responses. The number of conflicts occurring is increasing, lasting longer and affecting more people today than a decade ago. The number of children living in conflict zones has been steadily increasing since the year 2000, increasing the need for health services and resources. This review systematically synthesised the indexed and grey literature reporting on the delivery of trauma and rehabilitation interventions for conflict-affected populations.

A systematic search of literature published from 1 January 1990 to 31 March 2018 was conducted across several databases. Eligible publications reported on women and children in low and middle-income countries. Included publications provided information on the delivery of interventions for trauma, sustained injuries or rehabilitation in conflict-affected populations. A total of 81 publications met the inclusion criteria, and were included in the review.

 

BMJ Global Health 2020;5:e001980

http://dx.doi.org/10.1136/bmjgh-2019-001980

Evidence and gap map of studies assessing the effectiveness of interventions for people with disabilities in low‐and middle‐income countries

SARAN, Ashrita
WHITE, Howard
KUPER, Hannah
January 2020

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The aim of this Evidence Gap Map (EGM) is to identify, map and describe existing evidence of effectiveness studies and highlight gaps in evidence base for people with disabilities in LMICs. The map helps identify priority evidence gaps for systematic reviews and impact evaluations. The EGM included impact evaluation and systematic reviews assessing the effect of interventions for people with disabilities and their families/carers. These interventions were categorized across the five components of community‐based rehabilitation matrix; health, education, livelihood, social and empowerment. Included studies were published from 2000 onwards until January 2018. The map includes 166 studies, of which 59 are systematic reviews and 107 impact evaluation

 

Campbell Systematic Reviews, vol.16, no.1, Mar 2020

DOI: 10.1002/cl2.1070

Impact of Exercise Training on Depression among People with Type 2 Diabetes Mellitus: A Narrative Review

KUTTY, N.A.M
PILLAI, D.R
2020

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Purpose: The prevalence of clinically relevant depressive symptoms among clients with Type 2 diabetes mellitus is in the range of 30%. Since these conditions are often under-diagnosed and under-treated in clinical practice, they negatively affect functional recovery, adherence to treatment, and the quality of life. Despite the large body of evidence regarding the effects of exercise training on different aspects of diabetes, no updated conclusive article that reviews depression is available. This article aims to review the current literature on exercise training and its effect on depression in people with Type 2 diabetes mellitus.

 

Method: An electronic search of literature from 2010, highlighting the effects of exercise on depression among Type 2 diabetes mellitus clients, was conducted using Google Scholar and PubMed.  Relevant articles were utilised for this review.  The selected studies are based on relational and rehabilitative exercise training approaches.

 

Results: While most of the studies support the efficacy of exercise training, study settings and described models are not conclusive.  No single clearly defined model exists for exercise training for depression among people with diabetes. There is evidence for the efficacy of supervised aerobic exercise in the treatment of depression, when undertaken three times weekly at moderate intensity, for a minimum of eight weeks. Further research is required to develop specific exercise training models that can be tested in experimental studies for this client group.

 

Conclusion: The current review showed that exercise training can be used to alleviate depression among people with diabetes. Future studies should adopt rigorous methodological criteria to back up the present findings.

Training Needs of Community-based Rehabilitation Workers for the Effective Implementation of CBR Programmes

VUUREN, Julia Mary Jansen-van
ALDERSEY, Heather Michelle
2019

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Purpose: This review investigates the training needs of Community-Based Rehabilitation (CBR) workers that would enable them to effectively facilitate CBR programmes. Emphasis was placed on identifying: (a) the skills that CBR workers require (b) the training currently available for them, and (c) the gaps in current training.

 

Method: A scoping review was conducted using on-line database searches (Medline, Embase, Cinahl, PsycInfo, Global Health) for English articles from 2006 onwards. A combination of keywords related to CBR, personnel, and training were applied. Hand searches of reference lists and the DCID journal were also conducted. Grey literature related to training, from the World Health Organisation (WHO), CBR Regional Networks and organisations affiliated with CBR were included as secondary data. Thirty-three articles and thirty-five sources from the grey literature were included. Data was organised under the three objectives outlined above – i.e., required skills, available training and training gaps.

 

Results: CBR workers represent a diverse group requiring a broad range of skills. A new cadre of mid-level workers is also necessary to effectively implement the CBR guidelines. There is currently no standardised training for CBR workers and training varies widely, depending on context. CBR workers require further training in various clinical, social, management, communication, and cultural competence skills across the spectrum of the CBR Matrix, and specifically in empowering persons with disabilities and facilitating community development. They also need to develop critical reasoning, creativity, and compassion.

 

Conclusion: A standardised approach to training CBR workers would be beneficial to ensure basic standards and quality services, to allow meaningful comparison and evaluation across contexts, to recognise the role of mid-level CBR workers, and to strengthen the workforce. Further research is required to determine minimal competencies, define the roles of various CBR workers, and evaluate the effectiveness of training.

Strengthening personal and family resilience: a literature review for the leprosy context

VAN'T NOORDENDE, Anna Tiny
KUIPERS, Kim
PEREIRA DSZ B
January 2019

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 A literature review was conducted to identify core elements of interventions to promote resilience in individuals and family members in the face of discrimination in the case of leprosy. A multi-phase adapted scoping review of English literature and a narrative review of the Portuguese language literature were carried out. Three main intervention focus areas in our review were identified: individual level, social/community level and system level.

 

Lepr Rev (2019) 90, 88–104

Assistive technology products: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit

SMITH, Roger O
SCHERER, Marcia J
COOPER, Rory
BELL, Diane
HOBBS, David A
PETTERSSON, Cecilia
SEYMOUR, Nicky
BORG, Johan
JOHNSON, Michelle J
LANE, Joseph P
SUJATHA, S
RAO, PVM
OBIEDAT, Qussai M
MACLACHLAN, Malcolm
BAUER, Stephen
2018

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This paper is based on work from the Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit that was coordinated by WHO’s Global Cooperation on Assistive Technology (GATE). The purpose of this paper is to describe the needs and opportunities embedded in the assistive product lifecycle as well as issues relating to the various stages of assistive product mobilization worldwide.

The paper discusses assistive technology product terminology and the dangers of focusing on products outside the context and rolling out products without a plan. Additionally, the paper reviews concepts and issues around technology transfer, particularly in relation to meeting global needs and among countries with limited resources. Several opportunities are highlighted including technology advancement and the world nearing a state of readiness through a developing capacity of nations across the world to successfully adopt and support the assistive technology products and applications.

The paper is optimistic about the future of assistive technology products reaching the people that can use it the most and the excitement across large and small nations in increasing their own capacities for implementing assistive technology. This is expressed as hope in future students as they innovate and in modern engineering that will enable assistive technology to pervade all corners of current and potential marketplaces. Importantly, the paper poses numerous topics where discussions are just superficially opened. The hope is that a set of sequels will follow to continue this critical dialog.

Assistive technology provision: towards an international framework for assuring availability and accessibility of affordable high-quality assistive technology

DE WITTE, Luc
STEEL, Emily
GUPTA, Shivani
RAMOS, Vinicius Delgado
ROENTGEN, Uta
2018

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Purpose: This is a position paper describing the elements of an international framework for assistive technology provision that could guide the development of policies, systems and service delivery procedures across the world. It describes general requirements, quality criteria and possible approaches that may help to enhance the accessibility of affordable and high quality assistive technology solutions.

 

Materials and methods: The paper is based on the experience of the authors, an analysis of the existing literature and the inputs from many colleagues in the field of assistive technology provision. It includes the results of discussions of an earlier version of the paper during an international conference on the topic in August 2017.

 

Results and conclusion: The paper ends with the recommendation to develop an international standard for assistive technology provision. Such a standard can have a major impact on the accessibility of AT for people with disabilities. The paper outlines some the key elements to be included in a standard.

Systems thinking for assistive technology: a commentary on the GREAT summit

MACLACHLAN, Malcolm
SCHERER, Marcia J
2018

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The area of assistive technology has a long history of technological ingenuity and innovation. In order to ensure that the benefits of assistive technology are equitably distributed across the population and life course, it is necessary to adopt a systemic approach to the area. We describe examples of systems thinking and non-systems thinking across 10 Ps. These Ps are People (or users, as the primary beneficiaries of assistive technology), Policy, Products, Personnel, Provision (as key strategic drivers at systems level); and Procurement, Place, Pace, Promotion and Partnership (as key situational factors for systems). Together these Ps should constitute a framework for an “open” system that can evolve and adapt, that empowers users, inter-connects key components and locates these in the reality of differing contexts. The adoption of a stronger systems thinking perspective within the assistive technology field should allow for more equitable, more resilient and more sustainable assistive technology across high, middle- and low-income contexts and countries.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit

DESMOND, Deirdre
LAYTON, Natasha
BENTLEY, Jacob
BOOT, Fleur Heleen
BORG, Johan
DHUNGANA, Bishnu Maya
GALLAGHER, Pamela
GITLOW, Lynn
GOWRAN, Rosemary Joan
GROCE, Nora
MAVROU, Katerina
MACKEOGH, Trish
MCDONALD, Rachael
PETTERSSON, Cecilia
SCHERER, Marcia J
2018

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Assistive technology (AT) is a powerful enabler of participation. The World Health Organization’s Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a “state of the science” view of AT users, conceptualized as “People” within the set of GATE strategic “P”s. People are at the core of policy, products, personnel and provision. AT is an interface between the person and the life they would like to lead. People’s preferences, perspectives and goals are fundamental to defining and determining the success of AT. Maximizing the impact of AT in enabling participation requires an individualized and holistic understanding of the value and meaning of AT for the individual, taking a universal model perspective, focusing on the person, in context, and then considering the condition and/or the technology. This paper aims to situate and emphasize people at the centre of AT systems: we highlight personal meanings and perspectives on AT use and consider the role of advocacy, empowerment and co-design in developing and driving AT processes.

Enabling appropriate personnel skill-mix for progressive realization of equitable access to assistive technology

SMITH, Emma M
GOWRAN, Rosemary Joan
MANNAN, Hasheem
DONNELLY, Brian
ALVAREZ, Liliana
BELL, Diane
CONTEPOMI, Silvana
ENNION (WEGNER), Liezel
HOOGERWERF, Evert-Jan
HOWE, Tracey
JAN, Yih-Kuen
KAGWIZA, Jeanne
LAYTON, Natasha
LEDGERD, Ritchard
MACLACHLAN, Malcolm
OGGERO, Giulia
PETTERSSON, Cecilia
POUSADA, Thais
SCHEFFLER, Elsje
WU, Sam
2018

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Background and Methods: This paper reviews the current capacity of personnel in enabling access to assistive technology (AT) as well as the systems and processes within which they work, and was reviewed, discussed, and refined during and following the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit.

 

Findings: Key concepts addressed include a person-centred team approach; sustainability indicators to monitor, measure, and respond to needs for service design and delivery; education, research, and training for competent practice, using the six rehab-workforce challenges framework; and credentialing frameworks. We propose development of a competence framework and associated education and training programs, and development and implementation of a certification framework for AT personnel.

 

Conclusions: There is a resolve to address the challenges faced by People globally to access assistive technology. Context specific needs assessment is required to understand the AT Personnel landscape, to shape and strengthen credentialing frameworks through competencies and certification, acknowledging both general and specific skill mix requirements.

Assistive technologies in developing countries

ROHWERDER, Brigitte
March 2018

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This rapid review looks at examples of existing literature on the availability of assistive technologies and efforts to make these technologies more affordable and accessible in developing countries. Needs and access to assistive technologies are overviewed. The discussion of market characteristics of assistive technologies covers availability, affordability, quality, appropriate design, and awareness and demand.  Efforts to increase the affordability and accessibility of assistive technology are discussed covering: The Global Cooperation on Assistive Technology (GATE); the WHO Priority Assistive Products List; and EYElliance and eye health initiatives. Market shaping and community based approaches are discussed in this context.

 

This is a K4D helpdesk report. This report was commissioned by the UK Department for International Development (DFID)

Assistive technology policy: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit

MACLACHLAN, Malcolm
BANES, David
BELL, Diane
BORG, Johan
DONNELLY, Brian
FEMBEK, Michael
GHOSH, Ritu
GOWRAN, Rosemary Joan
HANNAY, Emma
HISCOCK, Diana
HOOGERWERF, Evert-Jan
HOWE, Tracey
KOHLER, Friedbert
LAYTON, Natasha
LONG, Siobhán
MANNAN, Hasheem
MJI, Gubela
ONGOLO, Thomas Odera
PERRY, Katherine
PETTERSSON, Cecilia
POWER, Jessica
RAMOS, Vinicius Delgado
SLEPIČKOVÁ, Lenka
SMITH, Emma M
TAY-TEO, Kiu
GEISER, Priscille
HOOKS, Hilary
2018

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Increased awareness, interest and use of assistive technology (AT) presents substantial opportunities for many citizens to become, or continue being, meaningful participants in society. However, there is a significant shortfall between the need for and provision of AT, and this is patterned by a range of social, demographic and structural factors. To seize the opportunity that assistive technology offers, regional, national and sub-national assistive technology policies are urgently required. This paper was developed for and through discussion at the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit; organized under the auspices of the World Health Organization’s Global Collaboration on Assistive Technology (GATE) program. It outlines some of the key principles that AT polices should address and recognizes that AT policy should be tailored to the realities of the contexts and resources available. AT policy should be developed as a part of the evolution of related policy across a number of different sectors and should have clear and direct links to AT as mediators and moderators for achieving the Sustainable Development Goals. The consultation process, development and implementation of policy should be fully inclusive of AT users, and their representative organizations, be across the lifespan, and imbued with a strong systems-thinking ethos. Six barriers are identified which funnel and diminish access to AT and are addressed systematically within this paper. We illustrate an example of good practice through a case study of AT services in Norway, and we note the challenges experienced in less well-resourced settings. A number of economic factors relating to AT and economic arguments for promoting AT use are also discussed. To address policy-development the importance of active citizenship and advocacy, the need to find mechanisms to scale up good community practices to a higher level, and the importance of political engagement for the policy process, are highlighted. Policy should be evidence-informed and allowed for evidence-making; however, it is important to account for other factors within the given context in order for policy to be practical, authentic and actionable.

Cochrane Rehabilitation Methodology Committee: an international survey of priorities for future work

LEVACK, William
et al
October 2017

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Cochrane Rehabilitation aims to improve the application of evidence-based practice in rehabilitation. It also aims to support Cochrane in the production of reliable, clinically meaningful syntheses of evidence related to the practice of rehabilitation, while accommodating the many methodological challenges facing the field. To this end, Cochrane Rehabilitation established a Methodology Committee to examine, explore and find solutions for the methodological challenges related to evidence synthesis and knowledge translation in rehabilitation. An international online survey was conducted via Cochrane Rehabilitation networks to canvass opinions regarding the future work priorities for this committee and to seek information on people’s current capabilities to assist with this work. One of the areas of debate concerned whether and how work on the application of Cochrane methods in low and middle income countries should be prioritised.

 

Eur J Phys Rehabil Med 2017;53:814-7

DOI: 10.23736/S1973-9087.17.04958-9

Rehabilitation in health systems

WORLD HEALTH ORGANISATION (WHO)
2017

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This document provides evidence-based, expert-informed recommendations and good practice statements to support health systems and stakeholders in strengthening and extending high-quality rehabilitation services so that they can better respond to the needs of populations. The recommendations are intended for government leaders and health policy-makers and are also relevant for sectors such as workforce and training. The recommendations and good practice statements may also be useful for people involved in rehabilitation research, service delivery, financing and assistive products, including professional organisations, academic institutions, civil society and nongovernmental and international organisations. The recommendations focus solely on rehabilitation in the context of health systems. They address the elements of service delivery and financing specifically. The recommendations were developed according to standard WHO procedures, detailed in the WHO handbook for guideline development

The Functions of Disabled People’s Organisations (DPOs) in Low and Middle-income Countries: a Literature Review

YOUNG, Rebekah
REEVE, Mathew
GRILLS, Nathan
2016

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Purpose: The aim of this study was to review peer-reviewed literature on the roles and functions of Disabled Peoples’ Organisations (DPOs) in low and middle-income countries, and their outputs and outcomes for people with disabilities.

 

Method: Online databases were searched without date or language limiters (Medline, CINAHL, Scopus, Embase and Cochrane), using a combination of two key word search strategies. Eleven studies were selected for inclusion in this review on the basis of predetermined inclusion and exclusion criteria. Included studies underwent quality assessment using the Critical Appraisal Skills Programme (CASP) and Downs and Black’s criteria for quality assessment. Data for thematic analysis was then grouped under the broad themes of: participation and factors that facilitate participation; development of partnerships and connections; and self-development and self-help.

 

Results: There was some evidence within the included studies to suggest that DPOs can produce significant, positive outcomes for persons with disability in terms of factors such as employment rates, access to microfinance and bank loans, accessibility of housing, acquisition of orthopaedic devices, involvement in civil society, development of friendships and networks, and participation in training programmes. Although the studies under review largely did not investigate the long-term impact of the reported DPO functions and outputs, some of the short-term outputs may be considered proximal indicators of outcomes such as increased empowerment and wellbeing.

 

Conclusion: The 11 studies in this review suggested that DPOs can be effective in achieving their stated aims of promoting wellbeing, participation and rights of people with disabilities in low and middle- income countries.

 

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

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Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

Promoting good policy for leadership and governance of health related rehabilitation: a realist synthesis

MCVEIGH, Joanne
MACLACHLAN, Malcolm
GILMORE Brynne
MACLEAN Chiedza
EIDE, Arne H.
MANNAN Hasheem
GEISER Priscille
DUTTINE Anthony
MJI Gubela
MACAULIFFE Eilish
SPRUNT Beth
AMIN Mutamad
NORMAND Charles
et al
August 2016

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General principles requiring contextual adaptation regarding optimal policy related governance of health related rehabilitation in less resourced settings were developed from a literature review and realistic synthesis. A systematic review of literature published since 2003 was carried out. Multiple reviewers selected articles for inclusion in the realistic synthesis.  A Delphi survey of expert stakeholders refined and triangulated findings from the realist synthesis. Context mechanism outcome pattern configurations (CMOCs) were identified from the literature and then developed into statements for the Delphi survey, whereby 18 expert stakeholders refined these statements to achieve consensus on recommendations for policy related governance of health related rehabilitation. Several broad principles emerged throughout formulation of recommendations: participation of persons with disabilities in policy processes; collection of disaggregated disability statistics; explicit promotion in policies of access to services for all subgroups of persons with disabilities and service-users; robust inter-sectoral coordination; and ‘institutionalising’ programmes.

 

 

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