1. Paediatric Disability Information & Advice Services in Rural Malawi
Orla Shanahan1, Macpherson Mallewa2, Margaret Wazikili3, Josephine Chimoyo2, Melissa Gladstone4
1. Liverpool School of Tropical Medicine, Liverpool, UK Queen Elizabeth Central Hospital, College of Medicine, Blantyre, Malawi 3. Malawi Liverpool Wellcome Trust, Blantyre, Malawi 4. Department of Women’s & Children’s Health, Institute of Translational Medicine, University of Liverpool, UK
Acknowledgements: Sir Halley Stewart Trust, LSHTM KIM Project, University of Liverpool, QECH Paediatrics department, Malawi, Liverpool Wellcome Trust
Background
Disability information and advice services for families of children with disabilities in rural Malawi are lacking despite the complex issues these families and their children face in the community
Aim: To explore the perceptions and experiences of families and community workers (CWs) who manage children with disabilities (CWD) in rural communities. To subsequently use the perspectives and opinions gathered to develop a tailored community based rehabilitation (CBR) training scheme for CWs in Thyolo district, Southern Malawi.
Objectives: To understand the experiences of family members who support CWD, regarding the information and advice they receive, as well as the barriers they face. To describe the perceptions of community workers who manage CWD in terms of their level of knowledge and training.
Methodology
Qualitative in-depth interviews & focus group discussions (FGDs) in four rural traditional authorities in Thyolo district, southern Malawi.
Purposive sampling was used with recruitment via health surveillance assistants and “key-informants”. Thematic analysis was conducted using NVIVO10
Thyolo participants
Data collection method
Number of IDIs/ FGDs
Number of participants
Parents of disabled children <8 years
In-depth interviews (IDIs) 17
Focus group discussions 4 31
Community workers (CBCC trainer, SNE teacher, PODCAM coordinator, SWO, CBR worker)
In-depth interviews 5
TOTAL 53
Fig 1: IDI with a mother, Thyolo Fig 2: FGD with parents from Thomasi, Thyolo Fig 3: Sample Matrix
Results
Community Workers (CWs)
Parents/ Carers
Lack of funds for outreach programmes: “The kind of motorcycles that we have at the moment are always on and off. We cannot get to many places. We have the desire to reach out to the masses but we can’t”
Challenges faced: Parents commonly asked for transport, or outreach services that could visit them in their homes. They also expressed the wish to be encouraged and trained in techniques to help them care for their disabled child.
Lack of CW disability training: “Within my training there was one module about caring for vulnerable children such as CWD and orphans. But the kind of training we received does not relate very well to what we are facing in the field.”
They often discussed the need for counselling; “They could be helping us by providing counselling and advice on how we can deal with the disability...they have to tell us the truth about the disability of the child and whether the child will get better or not. This will help us to accept it.” 1
Community education campaigns
Promote the rights of CWD 2
1 day training course for central hospital staff
To cover: prognosis counselling, thoroughly explaining disability causes and outlook 3
Basic disability training for community workers
To cover: common disability types, their causes, potential capabilities of these children 4
CWs to be trained in physiotherapy techniques/ other methods to help manage CWD
They then train the mothers in the techniques they have learnt 5
Establish parent support groups in collaboration with PODCAM
Improve counselling services 6
Advocate for more resource allocation in the disability sector
Conducting further research into the needs of children with disabilities
Fig 4: Main themes contributing to recommendations
Fig 5: Recommendations for a tailored CBR intervention in Thyolo
Conclusion
The understanding of caregivers’ and community workers’ experiences gained from this study can go some way in providing further suggestions for developing an appropriate training scheme. The main problem for both groups can be attributed, by and large, to issues of transport, discrimination and a lack of resources. Some solutions to the problems faced might be found in a supportive CBR intervention, training CWs to teach and empower parents. However, evidence is lacking on how best to design such a programme, and the results of this small study can only be taken so far. Therefore, more research is needed to pilot the recommended training interventions proposed and to collect further data from other districts in Malawi.