In Malawi, empowerment workshops and focus group discussions for children and for their carers are ongoing and each children’s palliative care site conducts one workshop and focus group discussion in each quarter.
Empowerment workshops
Empowerment workshops for children with life limiting illnesses are one of the activities which enable them to meet and share experiences. It helps them to learn more about their various illnesses and ways of how to cope. The same applies to parents, who for some time may have been suffering or having challenges for which they did not have the solutions or any ideas of of how to address them.
The main objectives of these workshops and focus group discussions are :
- To sensitise children about children’s palliative care.
- To create awareness of palliative care services to children of Malawi.
- To make them aware of their rights regarding palliative care.
- To create an environment where children who face life limiting and life threatening conditions will be able to share their experiences and be able to advocate for their needs.
The activities during these gatherings include sessions on different topics such as life limiting illnesses, nutrition, psychosocial care, rights of children with life limiting illnesses according to the ICPCN charter, sickle cell disease, epilepsy, cerebral palsy, drugs used in palliative care and many more as requested by either the children themselves or their guardians.
Empowerment workshops and focus group discussions are very important in that they provide an environment where children with life limiting conditions and their guardians can share their experiences, learn from each other and from service providers, share challenges and help each other with advice on how they can overcome them. Focus group discussions help them to air their concerns, give their opinions about the services and channel them to the appropriate people for consideration. They also act as a support group for the children and guardians.
Challenges
However these workshops and focus group discussions come with challenges such as transport costs since some people come from far. As travel in Malawi often involves long distances, it would be better if these activities could be conducted at centres close to the homes of the children and their carers.
You can learn more about this two country project, which is funded by DfID through Help the Hospices with technical support from ICPCN and aims to upscale children’s palliative care provision in Malawi and the Maharashtra district of India at www.icpcn.org.uk
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