Development of end-of-life care provision model for paediatric patients in intensive care units in Indonesia

Summary

Background

Although paediatric critical care in an intensive care unit is an integral part of reducing morbidity and mortality, it is undeniable that in this setting, death can also occur. Hence, when curative interventions are no longer effective, or when the prognosis for seriously ill children is highly unclear but likely to result in death, care is transitioning from curative to palliative and end-of-life care. The existing palliative care models have not explicitly addressed end-of-life care provisions in the paediatric intensive care unit (PICU). Moreover, they were developed in different countries and may not be successful if they are directly transferred to Indonesia due to the particular aspects of the Indonesian healthcare system and cultural beliefs that need to be considered.

Aim/objectives

To develop a theoretical model for end-of-life care provision, as part of palliative care, for children and their families experiencing dying and death in PICUs in Indonesia. 

Methods

The study design is a constructivist grounded theory with three work packages, including (1) conducting the systematic integrative review, (2) obtaining qualitative data from interview healthcare professionals (HCPs) and bereaved parents in four PICUs in West Java, Indonesia, which will be analysed using constant comparative analysis, and (3) developing a theoretical model for end-of-life care provision in PICUs. 

Results

The systematic integrative review in this study identified three elements of end-of-life care provision, including (1) Assessment of entering the end-of-life stage, (2) Discussion with parents and decision-making, and (3) End-of-life care processes during the dying phase, at the time of death, and after death. Qualitative data has been obtained from 25 HCPs and 16 bereaved parents and is being analysed.

Future plans

• Dissemination of the research findings through publications.
• Present the developed end-of-life care model to stakeholders and healthcare policymakers. 
• Postdoctoral project to implement and evaluate the model of end-of-life care provision.