Our project, which concluded in 2015, aimed to improve the quality of life of children with life limiting illnesses in Maharashtra State in India, and nationwide in Malawi.
Central to the project design was a multi team approach of engaging with expert model providers of children’s palliative care, global experts in children’s palliative care, national palliative care associations, and crucially, the children themselves.
Six new sites were identified as being suitable for the incorporation of children’s palliative care into their existing service. The in-country team then developed and delivered training and mentorship to these new sites, building their capacity for children’s palliative care service delivery. The project also focused on advocacy to change restrictive policy, raise awareness and push for sustainable change. It was important to the project team that there was a strong element of beneficiary engagement with the project, both to strengthen the quality of the service and to provide a direct voice to policy makers.
4294 new children received palliative care in the six additional sites over the project period.
Children in each setting joined ‘Empowerment Groups’ where they could share their experiences and discuss the changes to the services that were happening around them. These groups had a strong effect on the project, improving confidence and understanding both among the children and their carers, a feeling of support and shared experience. In one setting, the children’s group met directly with the minister of health and inspired her commitment to supporting palliative care for children.
The groups gave direct feedback to service providers, allowing for changes in the approach. The empowerment groups were credited with increasing demand for services as caregivers were keen to share their knowledge in the community and in some cases, conducting active case finding and referral to the new services.
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