Report on the two-week training at St Joseph’s Home for Chronically Ill Children in Cape Town

Tracy Rawlins and Sue Boucher travelled to Cape Town from 19 February to 03 March 2023 to facilitate Introduction to Children’s Palliative Care face-to-face training to a group of staff members of St Joseph’s Home for Chronically Ill Children in Montana, Cape Town. Representative of the multi-disciplinary team caring for the children at St Joseph’s,30 staff members attended the training, over a period of 2 weeks and included professional and enrolled nurses, occupational therapists, speech therapists, social workers, and a dietitian.

The programme we followed was based on the chapters in our book Palliative Care for Children – A guide for improving the quality of life of patients and their families and covered key principle which included the following topics:

  • Definition and principles of children’s palliative care
  • Continuum of care and illness trajectories
  • Places and models of care
  • Communication in children’s palliative care
  • Holistic assessment and care planning
  • Psychosocial care and play
  • Spiritual care and cultural competency
  • Teamwork and managing conflict
  • Self-care and building resilience
  • Pain assessment and management
  • Common symptoms and symptom management
  • End-of-Life Care
  • Loss, grief and bereavement

Several case studies from the book were used for groupwork and feedback sessions and the training included role playing to assist with learning of important principles of communication.

We are grateful to our colleagues from Paedspal, Dr Lyndal Gibbs, Sister Manda Kanka and Fiona McLennan, for assisting us with the presentations on pain management, end-of-life care and integrative therapies. The participants were particularly happy to experience the pleasure of massage with aromatic oils by practicing on one another.

On the final day of training, groups worked on developing Advance Care Plans for children at the home. It was gratifying to see how the knowledge gained over the previous week was applied in this practical way.

Assessment and Feedback

Pre and post course quizzes revealed a significant improvement in knowledge and awareness regarding children’s palliative care. Feedback on the training included the following comments:

  • “Thank you for the amazing course and for putting together an amazing book. I look forward to referencing my palliative care for children book over the years to come. Your passion for palliative care is infectious!”
  • “Understanding that children have similar needs including spiritual needs. This is a very new concept I have never thought about before.”
  • “Thank you for a lovely, informative and well-planned course.”
  • “This was my second time having palliative course – but this was the best 100%.”
  • “Thank you for clarity re: Ethics and Decision making and our role in psychosocial Care and Support.”
  • The training was very informative. I have gained significant insight especially assessment tools and references.”
  • Thank you for showing me that even a dietitian can have a meaningful role in palliative care, beyond just the clinical work.”
  • “You guys from PatchSA (Sue & Tracy) are so super, from day one I enjoyed the course the introduction, the small talks, presents, thank you!