Supporting children with disabilities in Malawi
Developing a framework to coordinate multi-agency support of children with disabilities in any country is no easy task. It is especially important in Malawi, as Anita Soni reports.
A team of researchers from the Universities of Birmingham, Glasgow, Malawi, The Catholic University of Malawi and Kamuzu University of Health Sciences have been working during 2022 as as on a multidisciplinary project entitled ‘Tiphunzire (Let’s Learn)’. We are trying to identify ways in which education, health and social welfare agencies can work together to support young children with disabilities and their families in a rural district in Malawi.
Why this is important
This is not a small issue in Malawi: Murphy et al, (2020) estimated that about 1 in 5 children at nurseries, known as Community Based Childcare Centres (CBBCs) in Malawi, have a developmental delay or disability. This does not include the children who may not attend CBCCs due to difficulties with transport, stigma and/or cost. Malawi, the focus of our research funded by the British Academy, is one of the world’s least developed countries with high levels of poverty, food insecurity, malnutrition and about half the population living on less than a $1 a day (United Nations, 2022).
If we can establish the principles of effective intervention here it can be done elsewhere.
We have been working with three key sectors (education, health and social welfare) to examine the processes in place to support children with disabilities and their families. These processes include:
- How and when children with disabilities are identified,
- Ways of identifying children with disabilities,
- Sharing and storing information about children,
- Referral processes.
There are different ways that sectors can collaborate and work together. Indeed, there are many activities in which different people need to work collaboratively to achieve a common goal.
What we have found is strong commonality of purpose: although people working with children with disabilities and their families come from different disciplines they are working towards a shared goal of supporting the child and their family. The World Health Organisation (WHO, 2011) highlights the importance of the common goal to ‘…assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments.’
However, even if thery have a common goal,the two key questions remain:
- How do the people from different sectors or disciplines actually work together?
- Where and how can they collaborate?
To answer these questions, we must first understand different types of collaborative intervention.
Different types of collaborative intervention
Figure 1 shows how multidisciplinary, interdisciplinary and transdisciplinary working can be placed on a continuum of interaction and integration.
In a transdisciplinary model of intervention, people work with families as part of a coordinated team, sharing information, creating shared goals and delivering support needed by the family in a systematic way. The people within the team work together with shared knowledge and so can cross boundaries to work in differing roles in the team. In a fully transdisciplinary team, this means they can take on each other’s roles as needed and work outside their role boundaries. This means they have to use shared language and have access to the same information. This is clearly highly desirable,
The professional use of language
As we interacted with focus groups from different agencies (education, health and social welfare) working with children in Chiradzulu, a rural district in Malawi, we became interested in how different professionals used language.
There were certain shared key words such as ‘children’ and ‘disability’, which was expected. However, we also noted that discipline-specific language was also evident, for example, the word ‘patient’ being used by health workers.
This differing use of language illustrates how disabled children may be viewed by different sectors and is noted in the literature to be one of the key challenges of any type of collaborative working. It was apparent that collaboration was taking place in a multidisciplinary rather than a transdisciplinary way.
District focus groups
In discussions with the focus groups, it became clear that different sets of data are being created by different agencies. When identifying children with disabilities, all three disciplines identified children at the natural entry point to their own sector withour referring to external records. For example, in education, children were identified as having disabilities at the point of school registration and in health, either soon after birth in the hospital or at the health centre or, if they attended a clinic or the hospital, at a later date. Each of the three disciplines used different tools e.g. checklists and child health passports to identify children with disabilities and the information gathered was then stored in different databases. This highlights a second challenge to collaborative working as essential information is not shared across disciplines and work is being replicated by different agencies rather than being coordinated between them.
Having identified some of the issues regarding terminology and record keeping, we needed to find a way of bringing people together. The first technical group meeting took place in March 2022 to consider how the disciplines can work together in future at district level, with each set of professionals identifying steps they can take to create ways of working together and to share information about childhood disability at district level in Chiradzulu.
The ultimate aim is to provide a much-needed common framework for coordinated support for these children from the time they are born. If this issue can be addressed in Malawi, it can provide an inspiration and example for others to follow.
Researchers working on the Tiphunzire! (Let’s Learn) project are Anita Soni, Jenipher Mbukwa Ngwira, Marisol Reyes Soto, Khama Chibwana, Emmie Mbale and Paul Lynch from the Universities of Birmingham, Glasgow, Malawi, The Catholic University of Malawi and Kamuzu University of Health Sciences.