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Background The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect – education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability? Methods A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members’ personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method. Results The emergent framework consisted of four main themes, organised as opposing constructs: ‘burden’ and ‘agency’, ‘sub-human’ and ‘human’. ‘Burden’ focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the ‘agency’ of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The ‘sub-human’ to ‘human’ construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings. Conclusion This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions. Electronic supplementary material The online version of this article (10.1186/s12914-018-0158-2) contains supplementary material, which is available to authorized users.

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 Disabled 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.

A high level of unmet communication need exists amongst children with developmental disabilities in sub-Saharan Africa. This study investigated preliminary evidence of the impact associated with a home-based, caregiver-implemented intervention employing AAC methods, with nine children in rural Kenya who have complex communication needs. The intervention used mainly locally-sourced low-tech materials, and was designed to make use of the child's strengths and the caregiver's natural expertise. A pretest-posttest design was used in the study. Data were gathered using an adapted version of the Communication Profile, which was based on the International Classification of Functioning, Disability, and Health (ICF) framework. The non-parametric Wilcoxon signed-rank test was applied to data from the first two sections of the Communication Profile-Adapted. Qualitative analysis was conducted on the final section. The data provided evidence of statistically significant positive changes in caregiver perceptions of communication at the levels of Body Structure and Function, and Activities for Communication. Also, analysis of the Participation for Communication section revealed some expansion to the children's social activities. The potential impact of the home-based intervention would benefit from investigation on a larger scale. Limitations of the study are discussed.

The co-operative revival in some African countries includes a focus on youth as the next generation of co-operators, where youth are increasingly establishing co-operatives and joining existing ones. Based on fieldwork with youth co-operatives in Lesotho and Uganda, the article shows how co-operatives promote collective learning, and how members learn ‘from’ and ‘with’ each other, leading to new ways of thinking and action. The dynamics are influenced by trust and power relations, the specificities of different co-operatives and access to co-operative networks. These findings reinforce the need for a youth policy in the African co-operative movement and supporting organisations. © 2014 The Authors. Journal of International Development published by John Wiley & Sons Ltd.

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.

To examine the relevance of the International Classification of Functioning, Disability and Health (ICF) to CBR monitoring and evaluation by investigating the relationship between the ICF and information in published CBR monitoring and evaluation reports.A three-stage literature search and analysis method was employed. Studies were identified via online database searches for peer-reviewed journal articles, and hand-searching of CBR network resources, NGO websites and specific journals. From each study "information items" were extracted; extraction consistency among authors was established. Finally, the resulting information items were coded to ICF domains and categories, with consensus on coding being achieved.Thirty-six articles relating to monitoring and evaluating CBR were selected for analysis. Approximately one third of the 2495 information items identified in these articles (788 or 32%) related to concepts of functioning, disability and environment, and could be coded to the ICF. These information items were spread across the entire ICF classification with a concentration on Activities and Participation (49% of the 788 information items) and Environmental Factors (42%).The ICF is a relevant and potentially useful framework and classification, providing building blocks for the systematic recording of information pertaining to functioning and disability, for CBR monitoring and evaluation. Implications for Rehabilitation The application of the ICF, as one of the building blocks for CBR monitoring and evaluation, is a constructive step towards an evidence-base on the efficacy and outcomes of CBR programs. The ICF can be used to provide the infrastructure for functioning and disability information to inform service practitioners and enable national and international comparisons.

Rehabilitation services are scarce in low-income countries, where under-representation of some specialist professions has led to the role extension of others. An example of this can be found in Kilifi in Kenya where the role of speech and language therapy has been taken on by occupational therapists and teachers.

This report by Iemmi et al. is based on a systematic review that looked at the impact of community-based rehabilitation (CBR) on health, education, livelihoods, social inclusion and empowerment. Most of the studies in the review found CBR to be an effective strategy. CBR also improved the clinical outcomes for people living with disabilities, reduced the burden on care givers and improved overall quality of life. Most of the limited evidence currently available is focussed on adults and the elderly living in Asia. Although CBR is intended as a strategy for people with all types of disabilities, the studies mostly focused on a few physical and mental health conditions and did not include sensory impairments.

PURPOSE: To develop a conceptual model representing the impact of musculoskeletal impairments (MSIs) in the lives of children in Malawi. METHOD: A total of 169 children with MSIs (CMSIs), family and other community members participated in 57 interviews, focus groups and observations. An inductive approach to data analysis was used to conceptualise the impact of MSIs in children's day-to-day lives. RESULTS: The main themes that emerged were Indignity, Exclusion, Pain and Hunger. Indignity represents various affronts to children's sense of inherent equal worth as human beings, for example when bullied by peers. Exclusion refers to CMSIs being excluded from three core daily activities: school, play and household chores. Some CMSIs experienced Pain, for example as an outcome of striving to participate. Children with severe mobility impairments were at increased risk of Hunger, having less access to food outside the home and placing a burden of care on the family that could restrict household productivity. Household Poverty was therefore included in the model, as this household impact was inseparable from the impact on CMSIs. CONCLUSION: It is recommended that rehabilitation interventions are planned and evaluated with consideration to their impact on Exclusion, Indignity, Pain, Hunger and Household Poverty using multi-faceted partnerships.

The Poverty Reduction Strategy of the Ugandan Government identified provision of microfinance as one of its interventions. Despite the known connection between poverty and people with disabilities, it remains unclear to what extent this intervention includes or accommodates them. This study seeks to gain a better understanding of how people with physical and sensory disabilities access existing microfinance services in the Bushenyi District of Uganda. Qualitative and quantitative methodologies are used. The findings suggest that people with disabilities are not necessarily denied access to microfinance if they meet the desired requirements. These relate to adequate savings or collateral and perceived trustworthiness. These are seen to be key determinants of success and can be linked to impaired functioning relating to limited mobility, distance, poorer access to information and disabled people’s own negative attitudes. Increasing access and utilization of microfinance services by people with disabilities ...

In Brazil there are no specific tests for either signed or spoken language for deaf children. A protocol evaluating communicative abilities independent of modality of communication (sign language or spoken language), and comprising assessments of (a) pragmatic profile; (b) modality of communication and linguistic level; (c) complexity of communication; and (d) style and efficacy of communication between parent and child was administered to 127 deaf and hearing children. The children, aged 3–6 years old, were distributed in three groups: 20 with severe hearing loss, 40 with profound hearing loss and 67 normally hearing. Deaf children were found to be delayed, independent of their linguistic level and preferred modality of communication. The protocol in this study proved to be an useful instrument for gathering relevant information about the three groups of preschool children's communicative abilities, and particularly suitable for use in countries where standardized assessments are not available. Learning outcomes: The reader will be introduced to the use of an assessment protocol comprising its development, application and data analysis. The reader will be informed about assessment of deaf children's preferred modality of communication, by the participation of a bilingual (sign language user) professional. Communication abilities can be assessed independently of the linguistic modality. In developing countries in general, where simple and easy to administer assessments tools are scarce, such a protocol is of specific value.

Background Carers of children with disabilities have repeatedly highlighted their feelings of discrimination, stigma and exclusion in many domains of their lives. There is little research from Africa addressing these issues. This study investigated the challenges encountered by these carers and the mechanisms of coping with these challenges while caring for children with disabilities in a poor rural setting in Kenya. Methods Thirty-five in-depth interviews were conducted with 20 carers, 10 community members and 5 primary school teachers. Ten unstructured observations were also conducted in home environments to observe mechanisms used in meeting the needs of the children with disabilities. All interviews were tape-recorded, transcribed and translated from the local dialect. Note-taking was performed during all the observations. Data were stored in NVivo software for easy retrieval and management. Results The arrival of a disabled child severely impairs the expectations of carers. Hospital staff underestimate carers' emotional distress and need for information. Fear for the future, stress, rumour-mongering and poverty are encountered by carers. As they grapple with lost expectations, carers develop positive adaptations in the form of learning new skills, looking for external support and in some cases searching for cure for the problem. For their emotional stability, carers apply spiritual interventions and sharing of experiences. Conclusion Despite the challenges faced by the carers, values and priorities in adaptation to the challenges caused by the child's disability were applied. It is recommended that these experiences are considered as they may influence programmes that address the needs of children with disabilities.

Background Nearly 50% of South African children lack access to clean safe water and many regularly carry water loads. The health effects of carrying water have not been well researched or considered when estimating the burden of disease due to suboptimal water supply. Improved access to safe water has potential to create important health and economic benefits, by reducing childhood exposure to risk factors for injury or disease. The aim of this study was to identify which domains of health children perceive as affected by water carrying. Methods Qualitative research was used within a broader mixed methods design to investigate children's perceptions about health and water carrying in Limpopo Province, South Africa. Qualitative data from eight semi-structured interviews and three 'natural group meetings', involving a sample of 30 children, were analysed using the framework approach of Ritchie and Spencer. The results were mapped to the International Classification of Functioning Disability and Health (ICF). Results Children broadly conceptualize and describe health to include the functions they perform and activities in which they participate. They perceived water carrying as impacting upon health in various ways, for example to make life better by facilitating water usage, or to make life worse through accidents and pain. Children's accounts demonstrate that they can identify and explain complex interactions between activities, participation and health. Conclusions The ICF framework facilitates the communication of children's perceptions of health and of relationships between health and water carrying. The model thus derived from their views incorporates not only commonly accepted conceptualizations of health condition, body structure and physiological function, but also of functioning through activities and social participation. Children's accounts suggest a possible association between water carrying and symptoms typical of musculoskeletal disorders. However, further research into the strength of association between water carrying and musculoskeletal disorders is needed. Language: en

Women's groups, working through participatory learning and action, can improve maternal and newborn survival. We describe how they stimulated change in rural Nepal and the factors influencing their effectiveness. We collected data from 19 women's group members, 2 group facilitators, 16 health volunteers, 2 community leaders, 21 local men, and 23 women not attending the women's groups, through semi-structured interviews, group interviews, focus group discussions and unstructured observation of groups. Participants took photographs of their locality for discussion in focus groups using photoelicitation methods. Framework analysis procedures were used, and data fed back to respondents. When group members were compared with 11 184 women who had recently delivered, we found that they were of similar socioeconomic status, despite the context of poverty, and caste inequalities. Four mechanisms explain the women's group impact on health outcomes: the groups learned about health, developed confidence, disseminated information in their communities, and built community capacity to take action. Women's groups enable the development of a broader understanding of health problems, and build community capacity to bring health and development benefit.

PURPOSE: The objective of this study is to develop a culturally relevant community-based intervention for children with communication disabilities in Kenya through a community/researcher partnership. The resulting intervention is for use in a randomized control trial which will be reported at a later stage. METHOD: Using a qualitative approach, initial data was collected through focus group discussions with women, disabled people and traditional dancers. The groups examined the needs, problems and challenges faced by disabled children and their families. This generated the content and structure for a series of participatory workshops with a further two women's groups. These workshops strove to generate a culturally relevant community-based intervention programme for children with communication disabilities and their families. The content and balance of the resulting intervention was observed to be different from existing programmes described in the literature. Notably it included many culturally appropriate strategies for increasing social integration and raising community awareness. RESULTS: The process of generating a locally relevant community-based rehabilitation intervention is potentially transferable and has particular relevance to the estimated 80% of the world where there are no formal rehabilitation services for children with disabilities and where women's groups are a strong element of local culture. CONCLUSION: (i) Community/researcher partnerships can be used to develop interventions; (ii) such interventions are different from those imported from other cultures; and (iii) this process is transferable and can be part of the preparations for a Randomized Control Trial.

This discussion paper focuses on using the International Classification of Functioning, Disability and Health (ICF) as a universal framework to examine health status outcome measures and clinical assessments. It reports challenges experienced whilst linking some assessment tools used by the allied health professions to the ICF. These included: establishing a common understanding of the ICF categories and structure; developing a common understanding of the linking rules; establishing the meaningful concepts contained in the assessment tools, and establishing the consensus in the linking process. It is recognized that the ICF does offer a standardized framework for describing health status, but on-going dialogue and debate between professions is required for reaching a standardized linking process. Ways to increase the reliability of the linking process will be critical to its success. The challenges described in linking the assessment tools to the ICF, can make a further contribution to that debate, and en...

We conducted a systematic review to assess the effectiveness of Community Based Rehabilitation (CBR) for people with physical and mental disabilities in low- and middle-income countries, and/or their family/carers, and community. We identified 15 eligible studies, 10 of which were randomised controlled studies. Overall, the studies suggested 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. However, this conclusion must be interpreted with caution due to the small number of studies, concerns about study quality, and lack of information on cost-effectiveness of the interventions.

Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America. Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), only around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conduct evaluation, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation. Conclusions and Recommendations: Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in evaluation processes. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international development.

This Campbell systematic review looks at the evidence from different types of community‐ based rehabilitation interventions in low‐ and middle‐income countries, which target different types of physical and mental disabilities. This review summarises findings from 15 studies, six which focus on physical disabilities and nine on mental disabilities. Moderate to high quality evidence shows that community‐ based rehabilitation has a positive impact on people with disabilities. Of six studies focusing on CBR for people with physical disabilities, three showed a beneficial effect of the intervention for stroke on a range of outcomes while one found a smaller effect; one study found a beneficial impact of CBR for arthritis; and one showed a positive impact of CBR for people with chronic obstructive pulmonary disease. The nine studies assessing the impact of CBR for people with mental disabilities showed a beneficial effect on schizophrenia (5 studies), dementia (3 studies) and intellectual disability (1 study). None of the studies that met the review's inclusion criteria included economic evaluations of community‐based rehabilitation. Synopsis/Plain Language Summary COMMUNITY‐BASED REHABILITATION FOR PEOPLE WITH DISABILITIES IN LOW‐ AND MIDDLE‐INCOME COUNTRIES: A SYSTEMATIC REVIEW. Review question We reviewed the evidence about the impact of community‐based rehabilitation on the lives of people with disabilities and their carers in low‐ and middle‐income countries. Background People with disabilities include those who have long‐term physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. There are estimated to be over one billion people with disabilities globally and 80% of them live in low‐ and middle‐income countries. They are often excluded from education, health, and employment and other aspects of society leading to an increased risk of poverty. Community‐based rehabilitation interventions are the strategy endorsed by the World Health Organization and other international organisations (e.g. ILO, IDDC) for addressing the needs of this group of people in low‐ and middle‐income countries. These interventions aim to enhance the quality of life of people with disabilities and their carers, by trying to meet their basic needs and ensuring inclusion and participation using predominantly local resources. These interventions are composed of up to five components: health, education, livelihood, social and empowerment. Currently only few people who need them benefit from these interventions, and so it is important to assess the available evidence to identify how to best implement these programmes. Study characteristics The evidence in this review is current to July 2012. 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). Key results Overall, randomised controlled trials suggested a beneficial effect of community‐based rehabilitation interventions in the lives of people with physical disabilities (stroke and chronic obstructive pulmonary disease). Similar results were found for non‐randomised studies for physical disabilities (stroke and arthritis) with the exception of one non‐randomised study on stroke showing community‐based rehabilitation was less favourable than hospital‐based rehabilitation. Overall, randomised controlled trials suggested a modest beneficial effect of community‐based rehabilitation interventions for people with mental disabilities (schizophrenia, dementia, intellectual impairment), and for their carers (dementia). Similar results were found for non‐randomised studies for mental disabilities (schizophrenia). However, the methodological constraints of many of these studies limit the strength of our results. In order to build stronger evidence, future studies will need to adopt better study designs, will need to focus on broader clients group, and to include economic evaluations. RÉADAPTATION À BASE COMMUNAUTAIRE POUR LES PERSONNES HANDICAPÉES DANS LES PAYS À FAIBLE REVENU ET REVENU MOYEN: UNE REVUE SYSTÉMATIQUE Ojectif Nous avions conduit une revue systématique sur l'impact de la réadaptation à base communautaire sur la vie des personnes handicapées et de leurs familles dans les pays à faible revenu et revenu moyen. Contexte Les personnes handicapées sont des personnes qui ont des déficiences physiques, mentales, intellectuelles ou sensorielles à long terme, dont leur environnement peut constituer un obstacle à leur pleine et effective participation dans la société. On estime que plus d'un milliard de la population mondiale présente un handicap, dont 80% vivant dans des pays à faible revenu et revenu moyen. Les personnes handicapées sont souvent exclues du système éducatif, de la santé, de l'emploi et d'autres aspects de la société, conduisant à un risque d'appauvrissement accru. La réadaptation à base communautaire est une stratégie approuvée par l'Organisation Mondiale de la Santé et d'autres organisations internationales (telles que OIT, IDDC) pour répondre aux besoins des personnes handicapées et de leurs familles dans les pays à faible revenu et à revenu moyen. Ces interventions visent à améliorer la qualité de vie des personnes handicapées et de leurs familles, satisfaire leurs besoins de base et favoriser l'inclusion et la participation, principalement par l'utilisation de ressources locales. Ces interventions sont composées de cinq composantes: santé, éducation, moyens de subsistance, social et autonomisation. Actuellement, dans les pays a faible revenu et revenu moyen, seulement une faible proportion des personnes qui pourraient bénéficier de la réadaptation à base communautaire ont accès a ces interventions, et il est donc important d'évaluer la littérature disponible pour identifier comment mettre en œuvre au mieux ces programmes. Characteristiques des éudes Les études de cette révue systématique arrivent jusqu'à Juillet 2012. Cette revue systématique a identifié 15 études qui ont évalué l'impact de la réadaptation à base communautaire sur la vie des personnes handicapées et de leurs familles dans les pays à faible revenu et revenu moyen. Les études inclues dans la revue systématique utilisent différents types d'interventions de réadaptation à base communautaire et s'adressent à différents types de handicaps physiques (accident vasculaire cérébral, arthrite, broncho‐pneumopathie chronique obstructive) et mentaux (schizophrénie, démence, déficience intellectuelle). Résultats principaux Dans l'ensemble, les essais contrôlés randomisés suggèrent un effet bénéfique des interventions de réadaptation à base communautaire dans la vie des personnes handicapées physiques (accident vasculaire cérébral et broncho‐pneumopathie chronique obstructive). Des résultats similaires ont été trouvés pour les études non randomisées pour le handicap physique (accident vasculaire cérébral et arthrite), à l'exception d'une étude non randomisée sur les accidents vasculaires cérébraux démontrant que la réadaptation a base communautaire est moins efficace que la réadaptation en milieu hospitalier. Dans l'ensemble, les essais contrôlés randomisés ont suggéré un effet bénéfique modeste des interventions de réadaptation à base communautaire sur les personnes ayant un handicap mental (schizophrénie, démence, déficience intellectuelle), et sur leurs familles (démence). Des résultats similaires ont été trouvés pour les études non randomisées pour le handicap mental (schizophrénie). Cependant, les contraintes méthodologiques de plusieurs de ces études limitent la robustesse de nos résultats. Afin d'établir des preuves plus solides, les futures études devront adopter de meilleures méthodologies, étudier un nombre de cas plus large, et inclure des évaluations économiques. REHABILITACIÓN BASADA EN LA COMUNIDAD PARA LAS PERSONAS CON DISCAPACIDAD EN LOS PAÍSES DE BAJO Y MEDIO INGRESO: UNA REVISIÓN SISTEMÁTICA Ojetivo Se revisó la evidencia sobre el impacto de la rehabilitación basada en la comunidad en la vida de las personas con discapacidad y de sus cuidadores en países de bajo y medio ingreso. Contexto Las personas con discapacidad incluyen a aquellas que tienen deficiencias físicas, mentales, intelectuales o sensoriales a largo plazo que, al interactuar con diversas barreras, pueden ver impedida su participación plena y efectiva en la sociedad. Se estima que más de mil millones de personas viven en el mundo con alguna forma de discapacidad y 80% de ellos viven en países de bajo y medio ingreso. A menudo son excluidos de la educación, de la salud, del empleo y de otros aspectos de la sociedad, y esto conduce a un mayor riesgo de pobreza. Las intervenciones de rehabilitación basada en la comunidad son la estrategia aprobada por la Organización Mundial de la Salud y otras organizaciones internacionales (por ejemplo, OIT, IDDC) para hacer frente a las necesidades de este grupo de personas en países menos desarrollados. Estas intervenciones tienen como objetivo mejorar la calidad de vida de las personas con discapacidad y sus cuidadores, satisfacer sus necesidades básicas y garantizar su inclusión y participación utilizando principalmente recursos locales. Estas intervenciones consisten de cinco componentes claves: salud, educación, subsistencia, social y fortalecimiento. Actualmente, de las personas que necesitan este tipo de intervenciones, sólo pocas se benefician de ellas, por lo que es importante evaluar la evidencia disponible para identificar cómo mejorar su implementación. Características de los estudios La evidencia en esta revisión sistemática está actualizada a Julio 2012. Esta revisión sistemática identificó 15 estudios que evaluaron el impacto de la rehabilitación basada en la comunidad en la vida de las personas con discapacidad y de sus cuidadores en países de bajo y medio ingreso. Los estudios incluidos en la revisión sistemática analizan diferentes tipos de intervenciones de rehabilitación basada en la comunidad y se dirigen a diferentes tipos de discapacidad física (accidente cerebrovascular, artritis, enfermedad pulmonar obstructiva crónica) y mental (esquizofrenia, demencia, deficiencia intelectual). Resultados principales En general, los ensayos clínicos aleatorios sugieren un efecto positivo de las intervenciones de rehabilitación basada en la comunidad en la vida de las personas con discapacidad física (accidente cerebrovascular y enfermedad pulmonar obstructiva crónica). Se encuentran resultados similares para los estudios no aleatorios para discapacidad física (accidente cerebrovascular y artritis) con la excepción de un estudio no aleatorio que muestra que la rehabilitación basada en la comunidad por las personas que sobreviven a un accidente cerebrovascular tiene un efecto positivo menor que la rehabilitación en el hospital. En general, los ensayos clínicos aleatorios sugieren un efecto positivo modesto de las intervenciones de rehabilitación basada en la comunidad en la vida de las personas con discapacidad mental (esquizofrenia, demencia, deficiencia intelectual), y en la vida de sus cuidadores (demencia). Se encontraron resultados similares para los estudios no aleatorios por las personas con discapacidad mental (esquizofrenia). Sin embargo, las limitaciones metodológicas de muchos de estos estudios limitan la fuerza de nuestros resultados. Con el fin de construir una evidencia más robusta, los estudios futuros necesitarán adoptar mejores diseños de estudio, analizar grupos de estudio más amplios e incluir evaluaciones económicas. Executive Summary/Abstract BACKGROUND Recent estimates suggest that there are over one billion people with disabilities in the world and 80% of them live in low‐ and middle‐income countries. Community‐based rehabilitation (CBR) is the strategy endorsed by the WHO and other international organisations (ILO, IDDC and others) to promote the inclusion of people with disabilities, particularly in low‐ and middle‐income countries. The coverage of CBR is currently very low, and the evidence‐base for its effectiveness needs to be assessed in consideration of scaling up of this intervention. OBJECTIVES To assess the effectiveness and cost‐effectiveness of CBR for people with physical and mental disabilities in low‐ and middle‐income countries, and/or their family, their carers, and their community. SEARCH METHODS The search for studies was not restricted by language or publication status. Searches were limited to studies published after 1976. We searched 23 electronic databases: AIM, CAB Abstract, CENTRAL, CINHAL Plus, Cochrane Database of Systematic Reviews, DARE (The Cochrane Library), EconLit, EMBASE, ERIC, Global Health, HTA Database, IBSS, IMEMR, IMSEAR, LILACS, MEDLINE, NHSEED, PAIS International, PsycINFO, The Campbell Collaboration Library of Systematic Reviews, Web of Science, WHOLIS, and WPRIM. We also searched relevant websites, contacted authors, screened the reference lists and tracked citations of included studies. The latest search for trials was in July 2012. SELECTION CRITERIA Controlled studies evaluating the impact of CBR offered to people with physical or mental disabilities and/or their family, their carers, and their community in low‐and middle‐income countries. The following study designs were eligible: randomised controlled trials, non‐randomised controlled trials, controlled before‐after studies, controlled interrupted time series studies, and economic studies. We excluded studies where CBR intervention took place only in health facilities or schools. DATA COLLECTION AND ANALYSIS Pairs of authors independently screened the search results by titles/abstracts and then by full‐text, independently assessed the risk of bias, and independently extracted data. We presented standardised mean differences (SMDs) and 95% confidence intervals (CI) for continuous data and risk ratios and 95% CI for dichotomous data. We undertook meta‐analysis only on outcomes extracted from studies for which the disabilities, research designs and outcome measures were agreed to be sufficiently consistent to allow pooling of data. Meta‐analysis was not performed on other outcomes because the outcomes extracted from studies did not measured the same construct, the intervention was not directed at the same disability condition, or the research designs were not similar. This decision about pooling was made post‐hoc and differs from the protocol. RESULTS We included 15 studies: 10 randomised controlled studies, two non‐randomised controlled studies, two controlled before‐after studies, and one interrupted time series study. The primary focus of 14 of the interventions was on the health component of the CBR matrix, one focused on the education component, and few included other components. Of the 15 studies, six focused on physical disabilities (stroke, arthritis, chronic obstructive pulmonary disease) and nine on mental disabilities (schizophrenia, dementia, intellectual impairment). Most of the interventions targeted both people with disabilities and their carers, although most of the studies evaluated the effect of the intervention on the person with disabilities only. Only one study focused on children as the beneficiaries of CBR. There were eight studies from East Asia and Pacific, two from South Asia, two from Europe and Central Asia, one from the Sub‐Saharan Africa, one from Latin America & the Caribbean, and one from the Middle East and North Africa. The heterogeneity between studies in terms of disabilities, research designs and outcomes meant that the review relies on a narrative summary of the studies and meta‐analysis was only conducted with the three studies on dementia, and only for a limited set of outcomes on users and carers. Among the six studies focusing on CBR for people with physical disabilities, two randomised controlled trials and one controlled before‐after study showed a beneficial effect of the intervention for stroke on a range of outcomes while one non‐randomised controlled trial found a less beneficial effect; one interrupted time series study found a beneficial impact of CBR for arthritis; and one non‐randomised controlled trial showed a positive impact of CBR for people with chronic obstructive pulmonary disease. The nine studies assessing the impact of CBR for people with mental disabilities showed a beneficial effect, including: three randomised controlled trials, one non‐randomised controlled trial, and one controlled before‐after study on CBR for schizophrenia; three randomised controlled trials on CBR for dementia; one randomised controlled trial on CBR for intellectual disability. The dementia trials were under‐powered to show a significant result, but when pooling data from the three studies, meta‐analyses suggested the intervention improved carers' clinical status (SMD=‐0.37, 95% CI=‐1.06‐0.32) and carers' physical quality of life (SMD=0.51, 95% CI=0.09‐0.94) and carers' social quality of life (SMD=0.54, 95% CI=0.12‐5.97). However, they also suggested the intervention did not improve clinical status (SMD=0.09, 95% CI=‐0.47‐0.28) and quality of life (SMD=0.22, 95% CI=‐0.33‐0.77) of people with disabilities, carers' burden (SMD=‐0.85, 95% CI=‐1.24‐0.45), carers' distress (SMD=‐0.16, 95% CI=‐0.54‐0.22), carers' psychological quality of life (SMD=0.11, 95% CI=‐0.31‐0.53), or carers' environmental quality of life (SMD=0.07, 95% CI=‐0.35‐0.49). No economic evaluations meeting the inclusion criteria were found. Methodological concerns were raised about the quality of the studies. AUTHORS' CONCLUSIONS 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. However the heterogeneity of the interventions and scarcity of good‐quality evidence means that we should interpret these findings with caution. More well‐designed and reported randomised controlled trials are needed to build a stronger evidence‐base. These studies need to be sufficiently powered, and focus on all different components of the CBR matrix and not only the health component. Furthermore, evidence is needed on a broader client groups including children, and economic evidence must be collected.

Uganda has made much progress towards including disabled people in its mainstream development, particularly in the political agenda. The exact process by which this has been achieved and the relationship between this and international guidelines and legislation are not known. This study undertakes to examine this from two specific perspectives: (1) How do international documents relevant to disabled people relate to national legislation in Uganda? (2) What can this comparison, together with the perceptions of stakeholders, tell us about how the legislation and services could improve? International legislation and Ugandan legislation is reviewed and compared. Data from 5 semi‐structured key informant interviews and 6 focus group discussions involving a total of 38 people are collected and analysed. The themes arising from the data are related to the documents, legislation, policies and other relevant literature. The results examine the barriers to service provision; the role of change; the importance of re...

Background: Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. Methods: A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. Results: There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. Conclusions: CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.

Country-specific issues affect both the implementation of services for people with communication disabilities and the training of specialists who provide these services. Uganda is a majority world country with an extremely limited specialist service, but is looking to expand it by developing training for specialist workers. This paper reports on the initial processes adopted in Uganda to develop such training. A workshop that brought together all the stakeholders identified key issues. The paper relates these issues to the International Association of Logopedics and Phoniatrics guidelines for education and training and makes suggestions for the way forward.

This paper argues that higher priority should be given to the development of services which support people with communication disabilities in low income countries and that these services should be different from those in other countries. Present services for this population group have poor coverage levels, tend to be centrally located and are orientated to specialist services. WHO (Health Programme Evaluation, Geneva, WHO, 1981) argue that health services should be based on meeting people's needs. This paper describes an analysis of 'needs related' qualitative data concerning people with communication disabilities and their families in two low income countries and examines the results in relation to service development. The data was collected as part of five different studies concerning people with communication disabilities carried out in Uganda and Nigeria. Using the principles of established theory, these data helped develop, a theoretical model. This model is compared with WHO's classification of Impairment Disability and Handicap ICIDH-2 WHO (International Classification of Impairments Disabilities and Handicaps (ICIDH-2), A manual of classification relating to the consequences of diseases, Geneva, WHO. 1997a; 1999). Suggestions are made as to how this model might inform planning and practice from the perspective of the five major stakeholder groups; government and non-government organizations, people with communication disabilities, their families and professionals. Consideration is also given as to how this theory can be used to strengthen existing services, or encourage a complete paradigm shift, with the creation of different services in new and innovative ways.

Under the Universal Primary Education (UPE) programme in Uganda, which was implemented in 1997, the idea of integrated education was put into practice. Today children with disabilities are enrolled in regular primary schools in the whole country. After three years of experience with UPE, the aim of this study was to examine the views of teachers about their needs for training and support regarding the task of teaching children with disabilities in ordinary classrooms. A qualitative approach was chosen using individual interviews, focus group discussions with teachers, pupils and head teachers, and observations in classrooms. Three primary schools in different districts of Uganda were selected as research sites. For a number of reasons data collection from the pupils proved problematic but generally the findings confirmed the information drawn from the review of literature. In addition to the high teacher-pupil ratio, there is an alarming lack of resources in the schools and an urgent need for teacher trai...

Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect-reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism.

Great Ormond Street Hospital (GOSH) has a long established service development and research programme with Sri Lankan colleagues. The Centre for International Child Health (CICH) is an academic unit with public health interests in the countries of the South. Together a group of collaborators at GOSH, CICH and in Sri Lanka worked together to plan how a cadre of health workers could be prepared to work with people with communication disabilities. This is not an uncommon aim in under-served countries and there is a small published literature about the courses which have been developed. Choices about models for training, service delivery and ensuring sustainability in emerging services for people with communication disabilities are complex. Links can be made with development work in other disciplines. The literature relating to these issues in countries such as Sri Lanka is examined.

Background: Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs. Methods: Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved. Results: Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an 'opening up' of communication that recognized the child's strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention. Conclusion: Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers' experiences, although it is not possible to attribute this change to any one aspect. The potentials of the home-based intervention would benefit from further investigation on a larger scale. © 2013 John Wiley and Sons Ltd.

Rehabilitation services are scarce in low-income countries, where under-representation of some specialist professions has led to the role extension of others. An example of this can be found in Kilifi in Kenya where the role of speech and language therapy has been taken on by occupational therapists and teachers.To investigate the communication practices used by these professional groups to support children with complex communication needs in a rural part of Kenya and to explore the ways in which this might be seen to facilitate or obstruct improved communication by asking the following questions: What are the critical features of interactional discourse in practitioner-child dyads with caregiver-child dyads providing a natural comparison? What communicative modalities and practice techniques are invoked? And how does this information relate to extending professional roles?An in-depth, descriptive study of a case series was conducted in a school for deaf children and the occupational therapy department of a district general hospital. A mixed methodology was used involving naturalistic observation and applied linguistics analysis. A convenience sample was established comprising six practitioner-child dyads assigned to partnership types: (A) three children with hearing impairment and their teachers; and (B) three children with cerebral palsy and their occupational therapists. As a natural comparator, the same three children in B were also observed with their mothers (partnership type C). Dyadic interaction was video recorded on three occasions. The video data were sampled, transcribed into standard orthography and translated. Codes were applied to determine turn structure, linguistic move types and communicative modalities. Sequential analysis was conducted on the move types.Partnership type A dyads showed a fairly even turn distribution between teacher and child. A common pattern was teacher-initiated Instruct and Model/Prompt, followed by child response in the form of an Action. The most frequently used modality was Sound Production and Hands-on-Articulators, which corresponded to articulation drill practice. Partnership type B dyads revealed a tendency towards adult domination of turns. The majority of adult-initiated moves required no response from the child. The practice technique Hands-on-Articulators involved manipulating the oral musculature of the child. Partnership type C dyads showed resonances of type B dyads, although focused more on Motor-Action in relation to task performance.The assignment of speech and language therapy duties to teachers and occupational therapists has resulted in suboptimal practice for children with complex communication needs.

Physiotherapy practice in Africa faces a number of challenges, one of which is the limited number of therapists in most public hospitals. In Africa, physiotherapy is still mainly institution based with very little community-based practice, leading to lack of access to services for a large part of the population. This study explores users' perceptions of physiotherapy, challenges faced by users, possible options for management, and determines whether current physiotherapy practice in a rural Kilifi District general hospital in Kenya facilitates future self-management of chronic conditions.Eight in-depth interviews, 3 focus groups discussions and 4 participant observations were conducted for data collection. All interviews and focus group discussions were recorded using a digital recorder, transcribed into the Swahili language and then translated into English. The transcriptions were imported to NVivo 9 (www.qsrinternational.com) for management and storage. Inductive data analysis was used to generate themes from the rich-text data of the transcriptions.Many of the users perceived physiotherapy as being effective. Challenges included distance from health facilities, negative experiences with some therapists, and lack of staff and equipment. Rehabilitation options included community- and home-based programs fostering self-management of chronic conditions. Current hospital practice lacks emphasis on self-management skills for patients with chronic conditions who can do their physiotherapy at home.Users' experiences of physiotherapy treatment in this rural hospital indicate that a host of challenges exist. In the face of these challenges, the needs of the users seemed to be compromised, especially those with chronic conditions

Purpose Information regarding the nature, availability and distribution of rehabilitation services for children with disabilities across developing countries is scarce, and data that do exist are of variable quality. If planning and development are to progress, information about service provision is vital. The aim was to establish the scope and nature of rehabilitation support available to children with disabilities (0–15 years) and their families in rural Kenya. Method A comprehensive sample comprising service provision in the health and special education sectors was established. Non-governmental and community-based organisations were also included. A survey of rehabilitation services was conducted through examination of service-related documentation and key informant interviews with the heads of services. Results Rehabilitation comprised hospital-based occupational therapy, physiotherapy and orthopaedic technology; and seven special education establishments plus an education assessment resource centre. There was one non-government organisation and one community-based organisation relevant to children with disabilities. Activities focused on assessment, diagnosis and raising community awareness. Provision was challenged by inadequate staffing, resources and transport. Government funding was supplemented variously by donations and self-sufficiency initiatives. Rehabilitation approaches appeared to be informed by professional background of practitioner, rather than the needs of child. Service documentation revealed use of inconsistent recording methods. Conclusions The data highlight the challenges of rehabilitation, demanding greater investment in personnel and their training, more material resources, improved access to the community and better recording mechanisms. Implications for Rehabilitation There needs to be greater investment in rehabilitation provision in developing countries. Consideration of community-based initiatives is required to support better access for all. In order to argue the case for improved resources, better skills and mechanisms for recording, monitoring and evaluating practice are needed.

To identify and analyse tools and methods that have been reported in the literature for the monitoring and evaluation of community-based rehabilitation (CBR) programmes.A literature review and descriptive analysis were carried out to scope CBR monitoring and evaluation methods and tools. A search was conducted using PubMed and Google Scholar databases, hand searches and reference lists. Reports were retrieved, screened and information was extracted and analysed against research questions.There were 34 reports which met the inclusion criteria. Analysis of the 34 reports showed that most reports used demographic and programme data. A range of methods were used: interviews, focus groups and questionnaires being the most common. Apart from this, no common standardised procedures or tools were identified and there was not a standard approach to the inclusion of people with disabilities or other CBR stakeholders.The findings suggest that there would be value in creating resources such as guidelines, common processes and checklists for monitoring and evaluation of CBR, to facilitate efficient and comparable practices and more comparable data. This needs to be done in partnership with people with disabilities, CBR providers, partners and researchers to ensure that all stakeholders' needs are understood and met. Implications for Rehabilitation While there is broad scope and complexity of CBR programmes, there needs to be consistency and a valid approach in the monitoring and evaluation methods and tools used by CBR programmes. The principles of CBR and CRPD require that monitoring and evaluation involve people with disabilities, CBR managers and staff not only as informants but also in the design and execution of monitoring and evaluation activities. The consistent use of appropriate and valid monitoring and evaluation methods and tools will contribute to developing a stronger evidence base on the efficacy and effectiveness of CBR.

Many people with epilepsy (PWE) in resource‐poor countries do not receive appropriate treatment, a phenomenon referred to as the epilepsy treatment gap (ETG). We conducted a qualitative study to explore the reasons for this gap and to identify possible interventions in Kilifi, Kenya. Focus group discussions (FGDs) were carried out of PWE and their caregivers. Individual interviews were conducted of PWE, their caregivers, traditional healers, community health workers and leaders, nurses and doctors. In addition, a series of workshops was conducted, and four factors contributing to the ETG were identified: 1) lack of knowledge about the causes, treatment and prognosis of epilepsy; 2) inaccessibility to antiepileptic drugs; 3) misconceptions about epilepsy derived from superstitions about its origin; 4) and dissatisfaction with the communication skills of health providers. These data indicated possible interventions: 1) education and support for PWE and their caregivers; 2) communication skills training for health providers; 3) and improved drug provision., Highlights ► Many with epilepsy do not receive appropriate treatment; epilepsy treatment gap (ETG). ► Qualitative study exploring reasons for ETG and identifying viable interventions in Kenya. ► ETG can be addressed through development of multifaceted interventions.

Purpose. To identify the assessment instruments and relevant outcome measures used in randomised clinical trials (RCTs) relating to interventions for adults with communication disorders, and then examine and compare the domains of the outcome measures using the International Classification of Functioning, Disability and Health (ICF) as a reference tool. Method. Published RCTs with primary focus on the effectiveness of rehabilitation for adults with communication disorders were systematically reviewed. Identified RCTs were examined for all the assessments used as outcome measures. Distinctions were made between the use of standardised assessment tools and non-standardised empirical measures. The key concepts examined by the outcome measures were then linked to the ICF using the established ICF linking rules. Results. The systematic review included 24 RCTs in which 11 trials used non-standardised empirical assessment as the outcome measure, and 18 trials included standardised instruments as the outcome measure. It is clear that all the identified items and meaningful concepts from the assessment used in the included studies can be linked to the ICF categories. Of the 108 linked level-two ICF categories, 53% were linked to ‘body functions’, 36% to ‘activity and participation’ and 9% to ‘environmental factors’. Conclusions. A wide range of outcome measures have been used in RCTs of interventions for adults with communications disorders. The ICF provides a clarifying framework for systematically gathering and examining the information about the content of outcome measures and then can be used as a common reference to identify and compare the domains of the outcome measures. The high proportion of elements relating to body functions raises some questions about the purpose and aims of the interventions.

BACKGROUND: Surveys have been the conventional methods used for identification of people with disabilities; however, they have been observed to be expensive and time-consuming that may not be affordable or practical. As a result, the participatory rural appraisal (PRA) and key informant (KI) approaches have been developed and increasingly used in the resource-poor countries. OBJECTIVE: To investigate the strengths and weaknesses of PRA and KI approaches in the identification of people with disability in resource-poor countries. METHOD: A review of published related papers was performed by searching electronic databases including PubMed, Scirus, Health on the Net (HON), Ovid Medline and SOURCE disability database. RESULTS: A total of 11 relevant papers were identified from the literature that used PRA or KI methods or both. The PRA and KI approaches were not only consistently less expensive than conventional surveys, but also observed to be simple and fast for identifying disabilities according to local perceptions, although they were less sensitive. The evidence showed that PRA and KI processes had the benefit of engaging and developing long-term partnerships with the local communities and so the likelihood of positive long-term impact on the community. CONCLUSIONS: The PRA and KI approaches could be fast and cost-effective methods for identifying people with disabilities as an alternative to surveys. They are especially useful when identification is related to subsequent development of community-based services for persons with disabilities. However, surveys were shown to be more sensitive and therefore more accurate for establishing prevalence rates of impairment.

Background This paper presents the methodology and findings from a proof-of-concept study undertaken to explore the viability of conducting a systematic, largely qualitative synthesis of evaluation reports emanating from Community Based Rehabilitation (CBR) projects in developing countries. Methods Computer assisted thematic qualitative analysis was conducted on recommendation sections from 37 evaluation reports, arising from 36 disability and development projects in 22 countries. Quantitative overviews and qualitative summaries of the data were developed. Results The methodology was found to be feasible and productive. Fifty-one themes were identified and the most important ones of these are presented to illustrate the significance of the method. The relative priorities of these themes indicated that "management" issues were the primary areas in which recommendations were made. Further analysis of themes reflected the emphasis evaluators placed on the need for enhanced management, organisational, personnel and administrative infrastructure in CBR projects. Evaluators consistently recommended that CBR projects should be more connected and collaborative at governmental, organisational, political and community levels. The synthesis also noted that evaluators questioned the emphasis in CBR on project expansion and income generation. Conclusion The application of the synthesis methodology utilised in this proof-of-concept study was found to be potentially very beneficial for future research in CBR, and indeed in any area within health services or international development in which evaluation reports rather than formal "research evidence" is the primary source material. The proof-of-concept study identified a number of limitations which are outlined. Based on the conclusions of 37 evaluation reports, future policy frameworks and implementation strategies in CBR should include a stronger emphasis on technical, organisational, administrative and personnel aspects of management and strategic leadership.

BACKGROUND: Most information on the causes of blindness has come from examining children in special education. To obtain a more representative population-based sample of children, a novel method was developed for ascertaining severe visually impaired (SVI) or blind (BL) children by training local volunteers to act as key informants (KIs). OBJECTIVE: To compare the demography and cause of blindness in children recruited by KIs with other ascertainment methods. METHOD: Children with SVI/BL were recruited in all 64 districts of Bangladesh. Three sources for case ascertainment were utilised: schools for the blind (SpEdu), community-based rehabilitation (CBR) programmes and KIs. All data were recorded using the standard WHO/PBL Eye Examination Record. RESULTS: 1935 children were recruited. Approximately 800 KIs were trained. The majority of the children were recruited by the KIs (64.3%). Children recruited by KIs were more likely to be female (odds ratio (OR) 1.6, p

Cross-sectional surveys have been used widely for identifying children with disabilities, but they have several disadvantages. The surveys concentrate on identifying impairments and do not encourage the participation and ownership of the community. Participatory rural appraisal (PRA) provides a cost-effective and efficient method that reflects the local perceptions of disability and involves local people. These factors are important for sustainability in resource-poor countries.To evaluate the application of PRA to identifying children with disabilities in a rural setting.PRA was used to identify children with disabilities in two rural sub-locations in Kilifi, Kenya. Data were collected through 12 focus group discussions and 12 social mapping activities. A purposive convenience sample of teachers, village leaders and women groups participated in the PRA. The perceptions of disability were established before identification of the children. The categories of identification were based on these local perceptions. The qualitative data were analyzed thematically and validation was performed through triangulation.Disability was perceived locally as the existence of impairments, activity limitations and participation restrictions. Disabilities were associated with traditional beliefs including witchcraft, evil spirits and punishments from God. In some cases these categories were mutually exclusive and in others they were concurrent. Children who had lost their parents and were not being cared for by relatives (disadvantaged orphans) were also perceived as disabled children by teachers and local women, but not by community leaders.The results suggest that PRA is an efficient and cost-effective method of identifying children with disabilities according to local perceptions, and it may be useful in community-based rehabilitation as an alternative to surveys.

Purpose Epilepsy is common in underresourced countries, where most people with epilepsy do not take antiepileptic drugs (AEDs). This underutilization, referred to as the treatment gap , was investigated in Kilifi, Kenya, by exploring the sociocultural context in which children with epilepsy and their families live. This study focused particularly on what effect attitudes and practices might have on service utilization, particularly the use of AEDs. Methods Attitudes and practices toward children with epilepsy were examined using qualitative data collection methods, namely, interviews, focus group discussions, group activities, and observations. These were carried out with children diagnosed as having active epilepsy, their parents, their grandparents, and health care personnel. Results The responses illustrate both positive and negative attitudes, underpinning a wide variety of practices toward children with epilepsy. They also indicate the use of several types of services that vary between the traditional, medical, educational, and religious. The choice of these services was affected by different socioeconomic factors, the complex interrelationship of which offers some explanation for the underutilization of AEDs. Conclusions The treatment gap may be explained by a “health versus sickness” model, accounting for families’ health-seeking behavior in relation to their perception of cause and treatment. In this model, occasional convulsions associated with fever in younger children are placed in the “health sphere,” making recommendations of regular and continued medication illogical for what is perceived to be a healthy child. When seizures persist beyond a certain age, the child is placed in the “sickness sphere,” meaning that the child is incurable and treatment attempts are futile. Better levels of understanding and information sharing among children with epilepsy, their families, and health care personnel are required to improve use of medical services. Possible interventions include community-based services and health education programs for the community and service providers.