Aims To assess the perceptions and experiences of families and community workers who manage children with disabilities in rural Malawi to enable the cultural adaptation of a training intervention. Disability information and advice services in this setting are limited despite the burden of paediatric disability on many families in Malawi. The study aims to clarify the needs and priorities of families and health-workers, existing practices and training, in order to inform the development of an efficacious training programme for community workers to improve support to families of children with disabilities.
Methods The study was conducted in Thyolo, a southern district of Malawi. Sampling was purposive and recruitment was via key informants, community health personnel and volunteers across four traditional areas. 17 interviews and 4 focus groups were completed with parents/carers of children with disabilities and 5 interviews were conducted with community workers, a total of 53 participants. Interviews and focus groups were conducted and recorded in Chichewa/English by a Malawian research assistant, then transcribed and translated. Analysis involved a thematic framework approach using NVIVO 10.
Results Parents discussed many complex issues. Their main challenges included discrimination in the community, a lack of information and general advice on disability, childcare management, the need for prognosis counselling and a lack of resources for transport, medications and SNE. On the whole, community workers felt that they needed more resources in order to provide outreach services. At present, they primarily act as disability awareness campaigners and provide referral services to other institutions. Access and transport were the main concerns raised, together with a lack of specific disability training.
Conclusion Lack of disability services, community-worker training, poor communication and discrimination of those with disabilities are significant barriers to the effective management of disabled children in rural Malawi. A programme providing specific disability training to community workers, sensitisation and education of communities on a local level, together with involvement of all relevant stakeholders, is necessary to overcome these factors and improve support to families of children with disabilities.
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