Dr Paul Lynch is a research fellow at the Visual Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham. Here he discusses an early childhood development and education training programme in Malawi for families with children who have visual impairment.
Despite the increasingly recognised burden of childhood disability on individuals, families and populations, research in this area (especially from low-income countries) has been described as woefully inadequate. We wished to address this gap by designing a study to create a tool for parents and professionals to help work on developmental stimulation and early communication with children who have a visual impairment in urban and rural settings in Malawi.
We used a participatory action research framework which allowed participants to express their opinions and experiences using their own language and interpretation, and focus on identifying solutions they believed would work in their context. A review of the literature on home-based intervention studies for children with disabilities found that training parents to continue home-based management and careare effective approaches that yield benefits to child health outcomes, personal care management,progress in physical and cognitive functioning even in the poorest settings. We aimed to develop a training pack that could address some of the barriers and perceptions to supporting children with visual impairment specifically around the areas of children’s communication and play.
- We successfully piloted a complete set of high quality and culturally sensitive training materials that were translated into the national language (Chichewa) and produced a variety of low cost toys and objects that help to stimulate communication and play in children with visual impairment.
- The training pack has recently been shared with a small number of experts at the World Health Organisation who have expressed an interest in aligning it with a current training programme – ‘Care for Child Development’ (UNICEF/WHO).
- We have received positive feedback from the children’s parents some of whom have noticed small but significant changes in their children’s behaviour particularly around improvements in gross and fine-motor skills, more of a willingness to socialise with other non-disabled children in the community.
A mother of a boy who is six years old and has severe low vision: “He plays with some of his friends using the balls and even the community talks to him, plays with him. He is now able to play with his friends and each time I want to play with him or do something with him, we always tell him that this is the ball… I started to struggle to work with my child… but the project has improved in playing and now I have questions about how my child can go to school.”
We were aware of the danger of being seen as researchers from the global North who are only interested in collecting data and not seeking to support those families and professionals we were working with. We therefore looked at ways we could involve them either by providing a small amount of money to buy materials to make toys or provide some skills training for the professionals. Both community workers and parents were able to use the small donation to make simple toys e.g. rattles, soft dolls, balls which were used in the training of children.
“I used a tube (plastic bottle) filled with seeds…. it rattles it and I place it somewhere the child follows it.”
“My child likes to play football. I made a football using local materials using plastic bags tied with string.”
Mother (2) – a doll – made from pieces of cloth sewn together.
Mother (3) – my child like toys making a noise. A rattle with bottle tops – she likes the sound of it rattling.
Boy with albinism – teacher made a toy car made out of wire and a motor bike.
I use spoons, cups things that make noise – these are what the child needs. (Advice from teacher)
We found that combining the tool with visits enabled more positive attitudes to their children with disabilities, improved relationships between carers and children and improved the responsiveness of the child. It provided a platform to enable a discussion around inclusion within an educational setting or institution. Parents reported in greater confidence in supporting their children, more initiation of play with children in the community and enabling play at home through creating toys and resources.
There is an acute lack of trained professionals in the Early Childhood Development and Education sector, particularly in childhood disability. Specialist teachers who have a training background in supporting children with visual impairment have full caseloads of children who attend school and have very little time to visit pre-school children at home. Other trained staff, such as CBR workers could help to fill the gap but they do not have the same training and experience as specialist teachers. The distribution of staff may depend on local policy, funding and level of experience of CBR coordinator and the Ministry of Disability’s capacity to sustain these services. In this situation of chronic under-resourcing the project relies on individual good will, knowledge, and availability of services to succeed.
The issue of paying community volunteers and caregivers is highly debated because of the low educational levels they posses (i.e. most do not have a Primary School Leaving Certificate). Discussions have taken place at the Ministry of Gender and Children about placing trained volunteers onto the civil service payroll. Other workers who are paid include child protection officers and community development workers. Health Surveillance Assistants (HSAs) were not given any salary till a few years ago. Now they are on the Ministry of Health’s payroll.
Evidence from this project indicates that multi-sectoral collaboration, including cooperation between different governmental and non-governmental agencies, is an important component of successful early childhood initiatives. Integrating health, education, social and economic development is vital to develop a supportive environment and the services necessary to support childhood development, especially among the most disadvantaged.
A tool for all
There is a strong urgency for the government and donor agencies (with the support of INGOs) to address the immediate problem of poor service provision and availability of important information for families who have children with disabilities. We found that families in the most remote parts of Malawi are experiencing incredible levels of hardship and stress because of very little information about what they can do to assist their children and seek the most basic care through clinical services.
We found that combining the training programme with visits enabled more positive attitudes of carers to their children with disabilities, improved relationships between parents and children and improved the responsiveness of the child. It also provided a platform to enable a discussion around inclusion within an educational setting or institution such as an ECD centre or primary school. Parents reported having greater confidence in supporting their children, initiating more play with children in the community and enabling play at home through creating toys and resources.
The project provided evidence that this programme could be used by someone with basic level of education and notional understanding of disability and therefore could be used by a number of different professionals such as a CBR worker ‘task-shifting’ or itinerant teachers (ITs) or caregiver champions.
Taking the research forward
We recommend further research should focus on developing a more comprehensive tool that can be used for children with other disabilities, particularly as a high proportion of the sample group (40%) had additional disabilities.
By Dr Paul Lynch, Research Fellow at the Visual Impairment Centre for Teaching and Research (VICTAR), Disability Inclusion and Special Needs at the University of Birmingham