Paul Lynch

Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries

Research understanding the lives of children with disabilities in low-income and middle-income countries has predominantly focused on prevalence studies with little progress on evidence-based service development. At the same time, global attention in child health has shifted from child survival strategies to those that bring child survival and development together. This review examines whether intervention research can be better aligned with current theoretical constructs of disability and international guidelines that advocate for the realisation of rights for children with disabilities and inclusive early childhood development.

Inclusive educational practices in Uganda: evidencing practice of itinerant teachers who work with children with visual impairment in local mainstream schools

This article reports on a research project investigating the role of itinerant teachers (ITs) of children with visual impairment in Uganda. The research focused on the activities of 52 ITs who recorded their work in a journal over a period of eight weeks (a new practice which was introduced to them through a workshop). Analysis of the data collected demonstrated that ITs were not able to visit all the children on their caseload as often as they had planned at the beginning of the project. Partly this was linked to a high proportion of their work being ‘community-focused’ (e.g. identifying new cases and advising the wider community about the implications of visual impairment) rather than ‘child-focused’ (linked to their caseload). In addition, they experienced other challenges, for example time-consuming travel and obtaining permission to be released from their regular teaching commitments. Whilst ITs found record keeping difficult, they felt it was a useful administrative procedure for managing caseloads and recognised the value of using the journals beyond the project. The policy and practice implications of the research for supporting children with special educational needs based around specialist teachers are considered.

‘I have learnt to love the child and give opportunities to play with peers’: A feasibility study of the training programme to support parents of young children with visual impairment in Malawi:

This is a first mixed-methods study, which created, adapted and tested the feasibility of a training programme targeted at parents, community professionals, specialist teachers and volunteers to provide advice on developmental stimulation for children with visual impairment in their homes in rural and urban settings of Malawi. The study followed guidance from the Medical Research Council Framework for Developing and Evaluating Complex Interventions and drew on a bioecological model to help understand the feasibility of a new intervention in Malawi for 30 children with visual impairment and their carers in three districts of Southern Malawi. We trained 14 community workers and specialist teachers, then piloted the programme, which we linked to Care for Child Development (a World Health Organization/United Nations Children’s training package), over 6 months. In total, 10 observations were carried out to measure fidelity of the intervention at the child’s home. Acceptability was accessed through 20 post-intervention interviews and a focus group discussion with carers. Findings show that the new programme enabled workers and parents to be more positive towards their children with disabilities, improving relationships and responsiveness in their interactions. Drawing on the findings of the feasibility study, outcomes identified for a trial include measures of communication, child development, family care environment, participation and inclusion. This study has significance in providing a methodology that can be drawn upon to develop similar training programmes for use with children with a wider range of disabilities. The article has particular relevance to institutions and organisations working in early childhood development in that it provides a model to aid the development of tailored training programmes for children with visual impairment. It puts forward a table of 10 key messages on how best to prepare young children with visual impairment for life at school and for life after school.

Supporting Children with Disabilities in Low- and Middle- Income Countries: Promoting Inclusive Practice within Community-Based Childcare Centres in Malawi through a Bioecological Systems Perspective

Given the narrow scope and conceptualisation of inclusion for young children with disabilities in research within low- and middle-income countries (LMICs) contexts, we draw on a bioecological systems perspective to propose the parameters for a broader unit of analysis. This perspective situates human development within a specific cultural context in which family, peers and schooling are regarded as key in responding to young children with disabilities in a given setting. We outline a new bioecological model to illustrate the proximal and distal factors that can influence inclusive early development for children with disabilities within LMICs. To illustrate the relevance of this model to early child development research, we consider its application, as a conceptual framework, with reference to a research study in Malawi. The study was designed to promote greater inclusive practice for young children with disabilities in Community-Based Childcare Centres (CBCCs) with a particular focus on the role of the CBCC volunteer ‘caregiver’ in rural Malawi. It has significance for educators, service providers and researchers concerned with facilitating inclusive early development across national boundaries and contexts.RésuméL’étroitesse de la portée et de la conceptualisation de l’inclusion de jeunes enfants handicapés dans le corpus de recherche dans les pays à revenu faible et (PRFI) contextes intermédiaire, nous puisons dans une perspective de systèmes bioécologiques pour proposer des paramètres pour une unité d’analyse plus large. Notre perspective situe le développement humain dans un contexte culturel spécifique dans lequel la famille, les pairs et la scolarité sont considérés comme des éléments clés pour apporter une réponse à la question des jeunes enfants handicapés dans un contexte donné. Nous décrivons un nouveau modèle bioécologique pour illustrer les facteurs proximaux et distants qui peuvent influencer le développement des enfants handicapés dans les PRFI pendant leurs premières années. Pour illustrer la pertinence de ce modèle pour la recherche sur le développement des jeunes enfants, nous prenons en considération son application comme cadre conceptuel, en référence à une étude menée au Malawi. L’étude a été conçue aboutir de promouvoir des pratiques plus inclusives pour les enfants handicapés fréquentant des garderies communautaires, en mettant un accent particulier sur le rôle de l’«assistant » bénévole dans les zones rurales du Malawi. Elle est importante pour les éducateurs, les prestataires de services et les chercheurs qui veulent faciliter un développement inclusif des jeunes enfants, au-delà des frontières et contextes nationaux.ResumenDebido al poco alcance y la conceptualización limitada de la inclusión de niños de edad temprana con discapacidades en investigaciones realizadas en el contexto de países de ingresos bajos y medios, utilizamos una perspectiva de sistemas bio-ecológicos, con el fin de proponer parámetros más amplios de análisis. Esta perspectiva sitúa al desarrollo humano dentro de su contexto cultural específico en el cual la familia, los compañeros y la escuela son considerados como factores vitales en la atención a niños de edad temprana con discapacidades. Se describe un modelo bio-ecológico para ilustrar los factores proximales y distales que pueden influenciar el desarrollo temprano en contextos inclusivos para niños con discapacidades en países de ingresos bajos y medios. Con el fin de ilustrar la importancia de este modelo para la investigación del desarrollo infantil temprano, consideramos su aplicación, como marco conceptual, con referencia a una investigación llevada a cabo en Malaui. El estudio se diseñó con el objeto de promover mejores prácticas inclusivas para niños pequeños con discapacidades en Centros Infantiles Comunitarios (CICs) con un enfoque especial en el papel que juega el cuidador voluntario del CIC en zonas rurales de Malaui. Este estudio es relevante para educadores, centros de educación e investigadores interesados en brindar desarrollo temprano inclusivo en diferentes contextos y territorios.

Education and social inclusion of people with disabilities in five countries in West Africa: a literature review

Abstract Purpose: An estimated 1 billion people worldwide live with some form of disability. With the adoption of the Sustainable Development Goals and the “Leave no one behind” agenda, there is a global momentum to ensure that disadvantaged groups, not least people with disabilities, are included and accounted for, in mainstream development efforts. However, in many low-income settings little is known about disability and the policies and programs in place to improve the lives of those affected. Method: This literature review describes the extent and quality of published and unpublished literature on education and social inclusion of people with disabilities in five West African countries: Cameroon, Liberia, Mali, Sierra Leone and Senegal. Results: Fifty-four unique documents met inclusion criteria of the review and described related policy and legislation; national and international stakeholders; intervention programs and primary research related to disability and inclusion. The majority of documents were from Sierra Leone (19); and four described more than one country. Primary research included mainly qualitative studies and cross-sectional surveys; 33 sources were critically appraised with the majority being attributed unclear risk of bias (20). Conclusions: The findings call for (i) standardized tools for monitoring the implementation of programs and policies at national level; (ii) improved stakeholder coordination mechanisms; (iii) development and adoption of coordinated approaches to measuring disability and social exclusion; (iv) rigorous evaluations of the effectiveness of disability programs and (v) disaggregation of routine data by disability. Implication for Rehabilitation There is a need for standardized tools for monitoring the implementation of programs and policies at national level. Countries that have not yet ratified the UNCRPD or the protocol should be supported to do so. Stakeholder coordination mechanisms need to be improved. Improved coordination between stakeholders involved in disability at the country level could help improve the quality of services delivered. Development and adoption of coordinated approaches is key to measuring disability and social exclusion. There are few, if any, rigorous evaluation of the effectiveness of disability-specific evaluations in the five countries. There is a need for disaggregation of routine data from development programs by disability to inform implementation.