‘Absent voices’: Feasibility study exploring whole family experience of living with parental refractory epilepsy to inform service development

The Patient Reported ImpleMentation sciEnce (PRIME) model has the potential to introduce family members, including children and parents living with refractory epilepsy to disease implications, and has the capacity and flexibility to involve whole family units in decision-making, and care and treatment pathways. However, in order for this to be possible we must first clarify the ‘absent voices’ of family members in disease management. Without whole family unit involvement a gap will remain in our understanding of these ‘influential voices’ and their influence on the lives of people living with refractory epilepsy This absence of understanding around how families function together and how they manage life with a parent living with epilepsy is also important if we wish to find solutions to how to link social care needs with service provision, to inform service design.