On Monday and Tuesday this week (22 & 23 August 2016) a group of trainers from the International Children’s Palliative Care Network (ICPCN) has been providing training in children’s palliative care in a Health Professional Master Class on Children’s Palliative Care to a group of 24 nurses and medical officers on the beautiful campus of Mildmay Uganda, a Centre of Excellence for the provision of comprehensive HIV&AIDS prevention, care, treatment and training services.
Mildmay Uganda took the opportunity to host the members of the ICPCN team to provide this training after the 5th APCA Conference which took place the previous week at the Speke Resort in Kampala. The training team included Professor Maryann Muckaden, (Professor & Officer in Charge, Unit of Palliative Care, Tata Memorial Hospital); Joan Marston (ICPCN’s Chief Executive); Prof Julia Downing, Dr Jenny Ssengooba, David Kavuma, Busi Nkosi and Sue Boucher.
Topics covered over the two days of training included key aspects of children’s palliative care such as pain management, management of symptoms other than pain, advance care planning, ethical issues relevant to children’s palliative care, communicating bad news, special difficulties when communicating with children, childhood development and play and caring for the family and siblings of sick children.
While providing children’s palliative care to the children of Uganda comes with its own challenges much has been done in this country to provide education and training in this specialised field. Uganda is the first country in Africa to have a one-year diploma in Paediatric Palliative Care, which can be done through Mildmay Uganda.
Professor Muckaden gave insights into the provision of children’s palliative care in India and the similarities to the African context and gave participants valuable information and knowledge about pain management and the management of symptoms other than pain.
Speaking about advance care planning on the second day of training, Dr Jenny Ssengooba reminded participants that when you do palliative care your life binds with the patients. “You take the child’s history; you know so many things about this child that it becomes really difficult for you to deal with the child’s death.”
She went on to say, “The death of a child is an unfair death. Remember, you are dealing with a double tragedy: the loss of life and an unfair scenario.”
Joan Marston spoke on special difficulties related to children and the often neglected practice of providing spiritual care for children. She told some touching stories of young children she had cared for who, despite their inability to express themselves, knew that they would die and the different way with which they said their ‘goodbyes’.
Asked what had been the most significant thing they had learned, participants said:
“When you make decisions, you have to sit as a team and look into the situation and decide what is best for the child.”
“Knowledge of childhood development and play is critical. You can learn a lot from watching a child at play.”
“We need to care for all the people around the child when providing care.”
Prof Julia Downing described ICPCN as an organisation working strategically to develop children’s palliative care globally with a special emphasis on developing countries and reminded participants that they could continue to learn about children’s palliative care through the ICPCN’s elearning courses available in eight languages.