Couples who receive a prenatal diagnosis of a fetal anomaly in Victoria, Australia, are generally offered a choice about whether or not to continue with the pregnancy. When a severe or ‘lethal’ abnormality is diagnosed, some couples decide to continue the pregnancy in the knowledge that their baby may die before or shortly after birth. Several Australian parents who published personal accounts of that experience describe a lack of clear clinical pathways, suggesting those who decide to continue a pregnancy following a diagnosis of a ‘lethal fetal abnormality’ (LFA) may not be receiving optimal care.
This study aimed to provide empirical Australian evidence of views and experiences of care provision from health professionals (HPs) and parents.
Materials and Methods
Two sequential phases of this qualitative study purposively recruited a range of key HPs and parents. Semi‐structured interviews were thematically analysed.
Findings reveal that current care provision following prenatal diagnosis of an LFA is ‘ad hoc’ with both participant groups identifying disparities between parents’ needs and available care. However, the goodwill and good intentions of all HPs involved was apparent. There was strong support from both groups for considering a model of perinatal palliative care (PPC) based on existing programs overseas.
Future care provision in this setting needs to be redefined. A formal PPC program could ensure better and more consistent experiences of support for parents as well as the HPs working in the field.