“There will be times when we cannot cure, but there is always an opportunity to heal and care.”
It is estimated that every year 21 million children globally require palliative care, with 97% of all children needing palliative care living in low- and middle-income countries (LMIC). Specialised palliative care for children is in its infancy in Nepal, and there is a substantial need for training of healthcare professionals, to increase their knowledge of which children need palliative care and how best to provide essential palliative care supports.
This inspired Dr. Krishna Sagar Sharma and Ms Roshani Tuitui, Children’s Palliative Care Leadership Programme Scholars, to spearhead the development of a paediatric palliative care (PPC) training manual to facilitate training of paediatric healthcare providers in palliative care across Nepal.
To begin this work, on May 24, 2024, the Government of Nepal hosted a stakeholder workshop in Kathmandu. This workshop brought together a wide range of health professionals, including nurses and physicians from the fields of paediatrics, paediatric oncology, and palliative care. Additional participants included government officials and representatives from the Nepalese Association of Palliative Care (NAPcare), a national organisation dedicated to improving access to palliative care in Nepal. The workshop included discussions focussed on the next steps to develop a national training curriculum to support children and adolescents with serious illnesses and their families.
The workshop started with opening remarks from Executive Director of BPK Memorial Cancer Hospital, Dr Shivaji Poudel, who emphasised on the urgent need to capacitate health workers in ensure that children can live ‘pain free’. The Executive Director of SKP Cancer Hospital, Dr Pradip Prasad Shah, highlighted the need for PPC in hospital settings as well at the community level. Similarly, Dr Bishnu Datta Poudel, Chairperson NAPcare shared the organisation’s commitment to support the development of this training manual, and palliative care advocacy at all the levels of the healthcare system.
Additional speeches from Dr Madhav Prasad Lamsal (Acting Director of National Health Training Centre); Mrs Sakuntala Prajapati (BPK Memorial Cancer Hospital); Dr Bijay Raj Naupane; Dr Gampo Dorji (World Health Organization); Dr. Arun Nuepane (Nepal Paediatric Society).
During the workshop, stakeholders worked in small groups to develop core aspects of the training curriculum, which is planned to include 5 days of teaching and simulation with role play and 2 days of clinical training. The proposed training modules include:
Module 1: Introduction and Scope of Paediatric Palliative Care
Module 2: PPC for Oncological and Non-oncological Conditions
Module 3: Communication in Serious Illnesses Including Breaking Bad News
Module 4: Psychosocial Support to children and families
Module 5: Multidisciplinary Team with Their Role in PPC and Integration of PPC in to clinical care
Module 6: Family Support and community Palliative Care
Module 7: Nutrition, Food and Fluids in PPC
Module 8: Adolescent Palliative Care
Module 9A: Pain and Pain Assessment
Module 9B: Pharmacological Pain Management
Module 10: Neurological Symptoms Management
Module 11: Respiratory System Symptoms Management
Module 12: Gastrointestinal Symptoms Management
Module 13: Wound Management
Module 14: Special Nursing Consideration on PPC
Module 15: Neonatal and Perinatal Palliative care
Module 16: Legal and Ethical Issue in PPC
Module 17: End of life Care and Bereavement
The workshop concluded with consensus to develop training manual as per NHTC guideline. A core team was identified who will lead the development of curriculum and regular meetings virtually to discuss content. Another residential workshop is planned to further develop the curriculum, providing a platform for feedback and input from stakeholders. The programme was supported by the World Health Organization, Two Worlds Cancer Collaboration, and National Health Training Centre (NHTC).
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