Recent diagnostic-therapeutic developments in foetal and neonatal medicine have profoundly changed the medical and ethical context of paediatric healthcare. Through these medical advances survival odds for extremely ill children are higher, but still a substantial part dies during the perinatal period bringing forth specific care needs. Herein, the emerging field of perinatal palliative care (PPC) arises to address much-needed support for infants, families and healthcare providers. Although PPC programs are being developed in hospitals globally giving some indication towards changing perinatal end-of-life care practice for the better, they are not evidence based and research on their implementation and effects is lacking. Currently, in Belgium, a PPC program is non-existent.
We aim to develop and evaluate the first Belgian PCC program in order to provide family-centred palliative care including comfort care for foetuses or neonates with a life-limiting diagnosis, psychological support for their parents, and support for involved healthcare providers.
We will follow the Medical Research Council framework for the development and evaluation of complex interventions to: 1) develop a PPC program (phase 0-1), and 2) implement and evaluate this new PPC program (phase 2) in terms of feasibility, acceptability and preliminary effectiveness. This project is a necessary step to evaluate and implement PPC and improve perinatal care widely in a Belgian and international context.