Lay summary
This research aims to make paediatric epilepsy care fairer and more effective for families in Aotearoa New Zealand. It recognises that treatment resistance in childhood epilepsy arises through two interacting pathways. The first is physiological pharmacoresistance, where seizures continue despite appropriate medication. The second, which is poorly understood, is trust-mediated pharmaco-resistance, where psychological, relational, historical, and online/digital influences shape whether families feel confident starting or continuing both medicine- and diet-based treatments.
By examining how clinical care pathways and online and digital environments jointly shape family decision-making, this project seeks to reduce unwarranted variation in care, prevent harm from health misinformation, and identify families at risk of declining effective treatment earlier. Using an interdisciplinary mixed-methods approach, the study draws on clinical data, surveys, interviews, and whānau-led photovoice to ensure lived experience informs service improvement. The project will generate a practical, scalable framework relevant to epilepsy and other conditions influenced by “food as medicine” narratives.