Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. This was the core message of the 5-day training that Tracy Rawlins and Sue Boucher of PatchSA (Palliative Care for Children South Africa) provided to two groups of healthcare providers from St. Joseph’s Intermediate Paediatric Care facility in Cape Town from 8 – 19 April, 2024.
St. Joseph’s Intermediate Paediatric Care describe themselves as “a bridge from hospital to home, where we believe that every medically fragile child has the right to excellent holistic healthcare, delivered in the spirit of Christian love and devotion.”
With a Western Cape population of over 6.2 million, St. Joseph’s is the only non-profit institution offering this type of service in the province. Located in Montana, Cape Town, it serves severely vulnerable communities. With over 170 children in their care, St. Joseph’s holistic approach includes, 24-hour nursing care, rehabilitation therapy and psychosocial support. When necessary, they also offer compassionate palliative care. All of their services are provided free of charge.
Palliative care is like an umbrella
“To introduce the course, the analogy of palliative care being like an umbrella was used. An umbrella is there to provide shelter and protection from the harsh elements just like palliative care can provide comfort and relief from physical, spiritual and psychosocial suffering. The colourful canopy represents all the members of a multi-disciplinary team, each as important as the other, and the umbrella frame represents the structure that supports how palliative care is provided. We also use it to emphasise the point that when palliative care is offered from the time of diagnosis, it is similar to offering someone an umbrella to carry with them, which they can choose to use at any time they may need it,” explains Tracy Rawlins, PatchSA Education & Training Manager.
The enthusiastic participants in the training were all staff members comprised of Enrolled Nurses, Enrolled Nurse Assistants, Child and YouthCare workers, Therapy Assistants, Physio and Speech Therapists. Held over the course of five days, the training is an Introduction to Children’s Palliative Care based on our guide, Palliative Care for Children – A guide for improving the quality of life of patients and their families.
Topics covered included:
- Ethics and legal considerations in children’s palliative care
- Effective communication in children’s palliative care
- Talking to children about illness, death, and dying
- Holistic assessment and care planning
- Pain and symptom management
- Psychosocial care and support
- Cultural competency and spiritual care
- End-of-Life management and care
- Grief, loss and bereavement
“When training adults it is crucial to keep in mind that everyone has their own unique and preferred way to learn, process, and retain information. To ensure we cater for different learning styles, the training team at PatchSA has created a programme that includes the use of most of the senses as well as group discussions, role plays and movement-based activities,” said Sue Boucher, a professional educator and the Programme and Communications Manager of PatchSA.
This year we were fortunate to meet Gudrun, a professional hospital clown from Switzerland, who had come to volunteer some of her holiday time with the children being cared for at St. Joseph’s. She very kindly took some time out of her day to talk to the participants about the value and healing power of laughter and had us all amused by her clown antics.
The evaluation and feedback received from the participants was overwhelmingly positive and participants were enthusiastic in their praise of our course content and how it was conveyed. It has been a joy and a privilege for the team from PatchSA to provide training over the past two years to crucial staff members of St. Joseph’s and PAtchSA looks forward to continued collaboration with St. Joseph’s in future.
Read the full report on the PatchSA website and find more photos and videos of the training on the PatchSA Facebook page.
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