Over 100 participants turned up and 7am on the final day of the KEHPCA palliative care conference to attend a workshop on children’s palliative care. The workshop, facilitated by ICPCN’s Director of Education and Research, prof Julia Downing, focused on understanding the need for children’s palliative care and the development of services.
Participants attended from all across Kenya, Uganda, Malawi, Rwanda and other parts of the region. The workshop aimed to introduce participants to some of the principles behind the development of children’s palliative care services, including:
Some of the issues encountered when identifying the need for service provision
Models of care
Identifying steps for development, and
Following an introduction to children’s palliative care and the status of its development around the world, participants discussed the challenges that they experience in the provision of children’s palliative care, which included:
Communication – with the child and the family. Participants identified their fears in doing this, particularly in relation to disclosure of diagnosis and breaking bad news.
A lack of skills in children’s palliative care, including clinical care and the fear of using strong analgesics in children and the pill burden for the child.
A lack of national policy on CPC, along with clinical guidelines to assist in care provision.
The attitude of the community and family to illness in children, its meaning and the way a child’s illness impacts society as a whole.
The cultural views of children and expected behaviours such that children should be seen and not heard, and that often children are not brought to the health facilities, thus care needs to be provided in the home.
Other challenges include that of stigma and neglect, caring for orphans, and a lack of child friendly facilities.
Participants then discussed some of the issues that need to be addressed when developing services from children’s palliative care, including the definition of palliative care, which children need palliative care, the definition of a child, when do they need palliative care, specialist vs. generalist palliative care, and issues around the model of palliative care service delivery.
Participants worked in groups, and then shared their thoughts through a facilitator with regards to the different issues. Models of care provision were discussed and some of the key results were shared from a recent study to look at different models of children’s palliative care from Global Partners in Care and the ICPCN. Participants were encouraged to make sure that the services that they develop are appropriate for the age and range of children seen, and that the services need to reach the children and their families where they are, in order to ensure that services are both available and accessible to the children in need.
By the end of the workshop, there were approximately 200 participants in attendance and the discussion and issues raised were rich, and hopefully helpful for all involved. The workshop was followed by a plenary session at the conference, where the results of the UNICEF/ ICPCN three country study on identifying the need for children’s palliative care, were shared, thus linking in well with the topic of the workshop, and the overall theme of the conference of ‘Palliative Care is everyone’s business’ with an affirmation that ‘Palliative care for children is everyone’s business’ and we should all be involved.
By Prof . Julia Downing