Introduction The project aims to support the development of children’s palliative care services across Malawi. The project aims to integrate children’s palliative care into existing service provision in 3 central hospitals.
Aims In this piece of work within the project, the project team aim to empower children and their guardians to be involved in, and inform, decisions that are made about the provision of paediatric palliative care, at local and national level.
Methods Regular empowerment workshops and focus group meetings are held with project beneficiaries (children and their guardians).
An advocacy meeting was between child beneficiaries and the Minister for Health for Malawi.
Learning and Results
Empowerment meetings have resulted in patients and guardians feeling more informed about the care they receive and more in control.
Focus group discussions with beneficiaries have resulted in changing practice at the services themselves.
Empowerment meetings have been most successful when participants identify their own key concerns and have the space to explore solutions with others.
Experience sharing and testimonies have played a great part in encouraging and learning from each other.
The workshop with the project beneficiaries and Minister for Health allowed policy makers to hear first hand the experience of those living with life-limiting illnesses resulted in the minister pledging support to children’s palliative care in Malawi.
The project is of interest to others who are working to support development of children’s palliative care. We would like to share our approach and learning with others, and to encourage discussion about participation and empowerment in any palliative care setting.
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