Pediatric palliative care in kelantan: A community engagement model

Abstract

Holistic package of palliative care service for children is not available in most places in the South East Asia. This has resulted in unwanted suffering and loss of hope in the unfortunate families. Pediatric palliative care (PPC) is a new subspecialty in Malaysia. In our region, it was started in 2012 as a University’s ‘community engagement project’ following completion of self-initiated palliative care distance learning in Australia by a pediatrician. The grant was labeled as a flagship project and secured under the Division of Community & Industry Network of USM (BJIM) to provide service in the hospital and outreach home based PPC services, which include nursing care, needs assessment and psychosocial support for the patients and caregivers. ‘Knowledge transfer program’ was initiated, in collaboration with Yayasan Orang Kurang Upaya (YOKUK) or Kelantan Foundation for the Disabled, to equip the outreach team with skills dealing with children with life limiting illnesses (LLI) in Kelantan. The move has propagated regular training setup with transformational program from hospital to community settings. This setup has led to mutual cooperation across the disciplines and provided linkages for stronger networking and training either locally or internationally. Better understanding on the importance of palliative care in the community can be achieved by having active community participation and volunteerism.